Jaw Surgery Was the Biggest Mistake of My Life - Philadelphia, PA

I had double jaw surgery and genioplasty just over...

I had double jaw surgery and genioplasty just over 4 weeks ago and the results have been absolutely devastating. I had a SARPE (palatal expansion) two years ago that went fine so my surgeon assured my the risks with this surgery would also be low.

My surgery ended up taking 12 hours, I needed more expansion than originally anticipated and so my palate accidentally tore during surgery. They had to take tissue from where they could to graft the tear but it wasn't enough so now I have a cadaver graft. I can feel pieces of exposed bone under the graft and yesterday a small piece of bone came dislodged and fell out. I can't rinse my mouth without water coming out of my nose.

They weren't able to get adequate blood flow to the upper gums after surgery and the tissue turned purple. Some of the tissue died and my gums receded so far up that bone is exposed. They're still not sure whether I'll lose the teeth or not. Right now I have to do hyperbaric oxygen treatment 6 days a week and at best I'll need a gum graft and at worst I'll need implants.

I got oral thrush from the antibiotics and I was unable to swallow. I spent 8 days in the hospital and lost about 20 pounds. At my lowest I weighed in the 90s.

If I could take it all back I would. I wish more than anything that I had never done this but now I'm stuck dealing with the many complications.

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Post op swelling

This is the swelling about 3 days post op.

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One Month Post Op

It's been just over a month and I still have complete numbness in the bottom of my nose, my lower lip and my chin. I have partial numbness in my upper lip. The only pain I have is in my right jaw joint which is severe and has been present since surgery. I also have pain in my right ear. I see the surgeon on Tuesday and I'm hoping he'll remove the splint and some of the stitches.

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Hi Chelie. I am so sorry to hear of everything you have been through with your tri-max surgery. I also had the three procedures done 2 years ago for my overbite (but not expansion). It was a very long recovery period and I got depressed, but I am doing ok now accept for partial lip numbness of my bottom lip. Please don't give up hope that however bad it seems at the moment, it will all come right in the end. It will just take time, and time is a great healer, both physically and mentally. All the problems can be overcome whether with tissue graft or implants (I have had both recently and doing ok). I wish you all the best and please keep us in touch with your progress. I wish you well and do hope you have supportive family and friends around you to help x
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Thanks so much for your reply Eva. It's comforting to hear how other people got through similar situations. I was prepared for a rough road but I never expected all this. It gets a little overwhelming at times but I try to remind myself to take it one day at a time. How long was your recovery from the grafts and implants?
Hi. The grafts were Alloderm rather than my own tissue, and that was fine. Recovery, ten days to be able to brush teeth again was the worse bit. Prep for implants into the bone was done 7-8 months ago so more swelling! Just about to have the implant tooth part put on in a couple of weeks time. Lots of stages to go through, but a piece of cake compared to max fax surgery so don't worry about that. As you say, one day at a time and you'll get there. All the best.

More bad news

I had my splint taken off today but the surgeon said there's way too much damage to save the teeth. I'll lose all 6 of the front ones and they'll have to take bone from my hip or rib to do bone grafts. The hole in the palate didn't close under the graft so they'll make a prosthetic device to cover that until I can have surgery again. Not the news I was hoping for.

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Thank you so much for sharing your experience with us, even though you are still in so much pain.  I also hope that things improve for you from now on.  Please do keep us posted.  I have never seen such severe recession.  One of our other community members, carol jake, suffered with pain post jaw surgery for six months before it finally subsided.  She'd given up hope, and many others commented on her review about their pain as well.  But her complications were nothing as severe as yours.  

I wish you a speedy recovery.
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Thank you. I read Carol's story and it sounded like a horrific ordeal. I was so unprepared for all this. I thought this would be the final surgery but it looks like it's going to be a long road. I think my complications were so severe because I have Ehlers-Danlos Syndrome. The surgeon was aware of this pre surgery but he wasn't concerned. It's only now that things have gone so wrong that he's realizing it should have been a factor. I'm trying hard to find the positive but it seems to just be getting worse.
There seem to be different types of EDS.  What is your manifestation, if you don't mind sharing?

Graft pictures (kind of gross)

During and after failed palate graft

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I hope you continue to find support in this community, for the ordeal you've been going through and that to come.  I wish you the best of luck, and look forward to reading your progress.
Good luck with your implants! I'm sure it's exciting to be in the final stages after all you've gone though.
Hi Chelie. Just saw your update pics - what a shame it went so wrong for you. I don't suppose this could have been predicted, although I would like to know more about this syndrome that you have, as I have not heard of it before. I had a hip graft for your interest, and although it went well, I found the recovery to take a long time, much longer than the 6 weeks my surgeon said. This could have been partly due to my keenness in getting back to exercising too early. I was told it was ok though, but developed a heamatoma and had soreness that latest a long time. The reason I'm telling you this is not to put you off but to warn you to take it easy after and don't rush things like I did! It's horrible when teeth have to come out through no fault of your own. I had one removed before my dentist would let me have braces and I was very sad, so I can't imagine how you must be feeling with so many to lose. My thoughts are with you for a good recovery. All the best and please keep updating. x

Alar Cinch

Now that I've started to get more feeling back in my upper lip I've noticed that it feels very tight, like something is pulling on it. I can't pucker my lips or smile fully. I mentioned this to my surgeon and he said he performed an Alar cinch to keep my nose from broadening during surgery. I'm going to ask him to remove the suture on Tuesday, hopefully it's a simple process.

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All these things I've never heard of.  Alar Cinch?  And it turns out your question has been answered here on RealSelf before!  At least in someone else's case.  Check this out, it's about removing the suture:

Alar Base Cinch Suture?
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Thank you! I spoke to him on the phone today and he said he'll remove the sutures on April 10th while I'm having my procedure. Unfortunately he'll also be removing not only my teeth, but also my anterior maxilla and hard palate :(

Anterior Maxillectomy

On April 10th I'll undergo surgery to remove my 6 front teeth, my anterior maxilla and part of my hard palate. I'll be given an immediate prosthetic to replace the missing bone and teeth and then eventually a more customized prosthetic. In a few months I'll undergo reconstructive surgery by a head and neck cancer specialist to attempt to reconstruct my face and jaw using bone from my hip or shoulder to make me appear as normal as possible. Eventually when the reconstruction is finished they can begin prepping for the implants. This is definitely not the path I expected but, for whatever reason, it was the path I was given and I fully intend to come out of this a stronger person.

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I'm very sorry to hear you had such a bad experience with your surgery. And thank you for documenting this. It looks like most people who post about their experiences only do so because it all went well. It takes a lot of courage to open up about this kind of thing when it doesn't go according to plan. I've been waiting for a long time for my own jaw surgery and I still have a bit to go. Understanding the extent to which things can go wrong is key to keeping expectations reasonable. Thank you again for sharing all of this. I hope things work out for you. Best, Aidan
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Just want to say I am really sorry that you are going through this. Do not beat yourself up for this "mistake" of getting the surgery. You could not have imagined this outcome. Please keep updating your journey. Good luck.
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Thank you :)

Medical Records and Second Opinions

Well the tissue in the anterior segment of my maxilla and palate became necrotic and literally fell off zombie style. Now I only have bone in that segment of my mouth so my maxillectomy has been moved up to Monday the 7th. I tried to get my medical records from the surgeon's office and they gave me a very difficult time. It took over a week and they left out the operating report and the post op X-rays. I had to ask 6 times before I was finally given all the reports. The surgeon assured me that he wasn't hiding anything but I'm finding it difficult to trust him.

I went for a second opinion at Cooper Hospital yesterday and I really liked the surgeon there. He said he never would have performed a 4 piece Leforte, especially on someone like me. He seems confident that he can eventually reconstruct me though. The whole process will take 1-2 years and involve bone and tissue grafting, bone morphogenic protein and implants but at least there's hope!

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Thanks for your comment Aidan! I struggled with the decision to post about my experience at first but I think it's important for people to know just how wrong things can go. My case is definitely the exception and most people get through the whole process with minimal complications but there are always risks. What kind of procedure are you having done? I hope everything goes well and you're happy with the results. I know for a lot of people the procedure can be an amazing thing and I wish you nothing but a positive experience and wonderful outcome :)
Thank you! :) It looks like I'll be having double jaw surgery in about 6 to 8 months to correct my underbite. Your second opinion at Cooper Hospital sounds very promising. I'll keep an eye out for more of your updates!
Can't wait to read your posts. Let me know if I can help in any way! Definitely get yourself a baby toothbrush, vasaline and a blender.

To sue or not to sue?

When I first realized that the surgery didn't go as planned I knew that there was potential for a lawsuit. The surgeon should have taken more precautions considering my medical history and hyperbaric oxygen should have been started immediately. I didn't initially want to sue though and I expressed this to the doctor. I saw what's happened to me as an opportunity to establish a standard of care that's been missing in the Ehlers-Danlos Syndrome community. I told him I wanted something positive to come from all of this and I wanted him to help spread awareness. He agreed to do a case report and have it published in a medical journal. I hoped that my case would make a difference for other patients with my condition.

In reality the surgeon learned nothing. He had his resident do all the research and write the report. In fact, just the other day he asked me how to spell Ehlers-Danlos. I was appalled. I had given this man an opportunity to not only avoid a law suit but also to make a difference and he was too arrogant to accept it. Instead of using this to become the type of doctor that EDS patients can go to, one that fully understands the risks and therefore the precautions that need to be taken, he decided not to treat anymore EDS patients.

He told me he has no control over whether or not I sue him, and this couldn't be further from the truth. He has all the control. If he had taken some initiative to be an advocate instead of covering his ass, we could both make a difference instead of battling it out in a courtroom.

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I'm sorry to hear that. you can ask me any questions at anytime
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Speak Like a Human

So I've been really anxious about my surgery tomorrow and I wanted to try to shift my focus in a more positive direction. Yesterday I went to see La Boheme with my aunt and then had an early bday celebration with my family (I'll be in the hospital on my bday). Then today my cousin had a party for his twin girls who just turned 2. It was great to see everyone and just feel sort of normal again.

When I was getting ready for the party today I had some sudden pain and it felt like some of the bone shifted and pushed up into the fistula in my palate. Some of the bone also fell off. I didn't want to call the surgeon since I'll see him tomorrow but the pain got worse so I got a little panicky and finally called.

I got a call back from a first year resident and I tried to explain to him that my situation was complex and I needed to speak to the surgeon. He refused to page him and then told me to either "speak like a human being" or he would hang up on me. Then he hung up on me. I was shocked. Mocking a patient who can't speak clearly after a procedure is unprofessional and incompassionate to say the least. I called back and eventually was able to speak to my surgeon but I can't believe how I was treated by the resident.

I don't think the surgeon understands how traumatizing this whole experience is. I'm doing my best to stay strong but there's so much uncertainty. I need to get myself back into that positive mindset before tomorrow.

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I'm astonished to hear how you were treated over the phone by the first year resident. Best of luck with your surgery today, Chelie. I hope all goes well.
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We will all be thinking positive thoughts for you, Chelie!  I hope you manage to rest tonight, and let us know how it went when you can.
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Sweetie - don't let these small minded idiots get to you. They are everywhere in life unfortunately, we can't avoid them. You just have to ignore their ignorance and fight on for your goal. you'll get there and we are all right behind you and thinking of you. Good luck, keep strong and please do keep in touch when you feel able.x

Post Op Update

So it's been about a week since I had the maxillectomy and I wish I could say I'm in great spirits but honestly I'm just incredibly angry. Wednesday was my 29th birthday and I thought about what a difficult year I have ahead. The surgery itself went pretty well. They removed all 6 teeth and layers of bone from the maxilla and hard palate. They were able to save some which should make reconstructing easier.

Right now I have a temporary obturator (prosthetic) its bulky and rigid and a different color than my natural gums. It's off center so it looks and feels ridiculous. They put platelet rich plasma underneath it to help stimulate new tissue growth. I'm still in a lot of pain and it's uncertain how things will end up.

The care I received was terrible. I was supposed to start hyperbaric oxygen the day after surgery but between transport and the nursing staff I got there late and missed a half hour of very important treatment time. The nurses kept forgetting to give me my medications and one of them refused to acknowledge when the IV became infiltrated and continued to push phenergan through the bad IV even though I was screaming. The surgeon went away on vacation so I won't follow up with him for a little over a week.

I wish I could be more positive but I don't really have it in me right now. Sorry guys :(

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Infiltrated IV

I don't know why the other picture didn't post but this is after my IV infiltrated and the nurse kept pushing phenergan through it. The vein is still hard and painful.

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Hi Chelie, I've read your story and I'm really sorry to hear what happened with surgery. I saw your pictures and I can see what you are going through right now. I really pray for your fast recovery and hope for you to feel better soon. I am amazed how strong are you facing this reality right now and I know that you can make it. Just always PRAY and I know that everything will be back to normal.
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Thank you :) All the positive support from the RS community definitely helps. Your post gave me the lift I needed today.
Thank you for your jaw surgery review, Chelie. I'm really sorry to hear what the surgeon and his staff put you through. But you come across very resilient and strong, through it all, so i applaud you for that. I've had my fair share of mistreatment, and coldness (when things go wrong), from doctors so I really sympathize. I hope that you will recover from this, get it fixed up, and come out even stronger. I am considering jaw surgery for myself for airway issues, open bite and tmj. I am planning to start going to consultations with different oral surgeons soon, so If you got any advice please do share. I'm kind of dreading it having to consider surgery. Even to go through the process of selecting an oral surgeon is going to be such hard work so i've been putting it off but i know that sooner or later, i'm going to have to take care of business and fix my jaw and teeth so they function properly. So far I have only seen dentists and one of them mentioned breaking my maxilla into several pieces and expanding. So i think it is similar to the kind of lefort you had. Not sure now if I want to go through this type of surgery. I know another person who lost 3 teeth due to surgery and she does not have Ehlers-Danlos Syndrome.
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A Little Positivity

There's no doubt that my spirits have been down since my last surgery a little over a week ago. I've been feeling frustrated and angry and it's hard to look in the mirror without crying. I gave myself some time to grieve the situation but I can't stay down forever. In two weeks I'll be cleared to return to work and I'll have to start facing the world with my prosthetic. So, in an effort to focus on the positive things I've compiled a list of things that don't completely suck:

1. When this is over my implants will be whiter and better shaped than my natural teeth.

2. I've started getting pins and needles in my lower lip which is an excellent sign that I may eventually regain FULL feeling.

3. I watched the entire series of Breaking Bad and still got paid.

4. Should there ever be a zombie apocalypse and I become a member of the undead, I'll still have 6 perfectly white front teeth and pink acrylic gums. Plus my face is so plated and screwed together that it couldn't fall apart.

5. Again in the event of a zombie apocalypse, I'll be fully prepared for what necrosis is like AND I've technically already had cadaver skin in my mouth.

6. I'll be able to bite into anything hot or cold without sensitivity.

7. Six less teeth to get cavities in.

8. I don't have to lose any weight before summer now.

9. I've met some really amazing people at hyperbaric medicine.

10. Because I work in healthcare, this experience only reinforces my compassion for my patients. It reminds me that no matter how busy my workday is, every single patient deserves to be treated with dignity and respect.

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Loved your list!  I could never watch Breaking Bad, but I've seen every Star Trek (saw below)...except not all of the Voyager ones.  Never did warm to that one.  Your infiltrated IV pic is working now--did you reload it or did it just fix itself?
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Haha I knew I liked you! The original series will always be my fav. I didn't care for all of Voyager either and some of Next Generation. Breaking Bad took me a few episodes to warm up to but once I got into it I really liked it. The pic fixed itself. I ended up getting a blood clot from that damn IV.
Jeepers--can't win for losing!  What do you do for a blood clot, though?  Can't that give you a heart attack or a stroke or something?

Obturator

Some of you have asked me to post pics from after the maxillectomy so here goes. This obturator is temporary but it's wired in so I can't remove it.

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I agree with Aidan.D.  It's a little noticeable with the open smile, but from the side and with closed mouth, it's surprisingly discreet.  Especially when you show us how big it is.  At worst, it just looks a little confusing, whereas the missing teeth would be really obvious what was going on.

I'd never heard of an obturator before this, and it seems like it's mostly used for cleft palate issues.  Do they build them specially for each patient, do you know?
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They're primarily used for cleft palate and head and neck cancer patients, since those are the majority of maxillectomy cases. They're specially made by a prosthodontist to fit each patient. This one took about 10 days to make and they designed it for the worst case scenario, meaning to replace the entire segment. The prosthodontist was able to grind away parts of the obturator during surgery depending on how much bone they were able to save and then she put it in when the surgeon was finished. Once I'm healed they take a better mold and they can make one that's lined and more comfortable. I'll also be able to remove the second one on my own.
This is just until you have further surgery, yeah?  Not forever like dentures...?

I'm learning new things every day from this, but even more importantly, I know there are lots of others out there who are learning things.  I just wish you didn't have to go through so much pain.

Two Week Post Op

It's been a little over two weeks since I had my last surgery. I had an appointment with the surgeon and the prosthodontist yesterday. First the surgeon took out the obturator. It was wired in and wire was threaded through my back teeth so the process wasn't fun. I think the sound of the wire cutters was probably worse than the pain though. It took a little while but he finally got it out and was able to see how everything is healing. The good news is that the area is healing pretty well and the exposed bone is about 75% covered with tissue. If it continues to heal then I won't need another debridement surgery and we can move forward with reconstruction sooner but it's still too early to tell.

This was the first time I've had the obturator out since my teeth were removed. I had no idea what the area was going to look like but I knew that emotionally, this was probably going to be the hardest part of the whole process. When he first took it out, it felt really weird/awful, like someone just removed a piece of my face. I couldn't figure out where to put my tongue and all the open space really freaked me out. The surgeon wanted me to rinse but my mouth couldn't figure out how to swish so he ended up cleaning the area with a Q-tip and irrigating it with saline. I still hadn't seen my face yet though.

The prosthodontist came in to take some molds for my new obturator. I really like her. She's so nice and she has such a calming nature about her. I feel like she gets how hard this is in a way that my surgeon doesn't seem to. Anyway, she took a bunch of molds and she also shaved down my current obturator a little so that it's not so bulky in the front. The new one should be ready in about 3-4 weeks. Then she had to teach me how to take the current one in and out since it's no longer wired in. She held up the mirror and told me to apply pressure to the metal clasp part in the back, I did and the obturator popped off. I couldn't look at myself. It was by far the hardest thing I've ever had to do. I put the obturator back in. I started crying and she gave me a few minutes to let everything sink in. She asked me if I was ready to try again, I wasn't but I knew this was something I had to do so I said yes. We repeated the process and I was happy to have the obturator back in. I didn't feel like a whole person without it.

The prosthodontist explained that she wanted me to take the obturator out whenever I'm home and at night. My heart sank but I just nodded. She said that the tissue wouldn't be able to heal with the pressure from the obturator constantly against it. I nodded again but I was horrified at the idea of having to face myself in the mirror every night without the prosthetic. She told me to follow up in a week and then in one of the first shows of sincere compassion I've seen so far, the surgeon put his hand on my shoulder and acknowledged how hard this was. He's said it before but always in a stock response kind of way and never in a way that made me feel like he's actually tried to put himself in my situation emotionally. It made me resent him a little less.

I got home and purposely went to bed late because I was delaying taking out the prosthetic. I finally got brave, went into the bathroom, brushed my teeth and then popped it out. I didn't look at the area. I'm hoping that the shock will wear off and it'll get easier in a few weeks. I keep reminding myself that this is temporary and one day I'll have implants but without knowing for sure how well they'll be able to reconstruct it's hard to rely on that. One day at a time though and if I can get through yesterday, I can get through anything.

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I'm still so impressed with you, at every update.  I would have been a wreck, too, if I'd been able to manage it at all.  So glad the prosthodontist is someone supportive you can work with.  Are you alone when you are going to these appointments?
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Thank you, I really like the prosthodontist. She's made a few really difficult moments a little easier. I was alone at the last appointment and most of my post op stuff. My dad has been amazing and he slept at the hospital a lot and took me to hyperbaric treatments when I wasn't able to drive yet. He's always there when I need him so I don't like to ask him to come unless it's absolutely necessary. I live alone though and I've been dealing with medical issues for years so going to appointments alone is almost like second nature now. I thought about asking my sister to go but I didn't want her to see me like that and I'm usually an even bigger baby when she's around.
I'm in awe of your strength and sense of independence. Your dad sounds cool, too. The apple hasn't fallen far from the tree it would appear. :)

Car Accident

Well I was on my way to meet with my lawyer today and as I was driving there my prosthetic came loose and popped off. As I was trying to get it out, traffic slowed down and I hit the car in front of me.

No one was hurt but my car isn't drivable. I had to explain to three police officers what happened, which was humiliating.

Luckily the guy I hit was young and super nice but the whole thing is so much added stress.

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I'm sure I missed it somewhere, but do you explain why you were having the jaw surgery in the first place? Was it solely aesthetics or was there another issue? I have never been diagnosed with anything (except TMJ when I was a kid) but have always been very unhappy with my recessed lower jaw and chin. I don't think I would ever go through the expense and pain of a jaw surgery, but have seriously considered a chin implant.
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My goodness!  So glad that no one was hurt.  I think if I'd been one of those police officers, I would have felt terrible for what you were going through.  I wish you hadn't had to feel embarrassed--no one would blame you for what had happened.  Normally, people just don't have to go through that kind of thing, especially in traffic.  You can't prepare for that.
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They cops were really nice. They didn't give me a ticket and they gave me a ride home but the whole situation was just so humiliating. It slips down a lot when I talk too but hopefully the new one will be ready soon.

No Secrets on the Internet

I made this blog for two reasons. The first is that I wanted to share my story with others so that they can fully understand the risks of jaw surgery. It's a major procedure and I want people to be aware that serious complications are rare but possible. The second is that the process has been incredibly difficult emotionally and writing about my experience is cathartic. It's a chance to vent my feelings in a supportive environment.

I never publicly posted the name of my surgeon because this isn't about him. While I definitely get frustrated with him at times, I'm not trying to bash him either. I had a woman private message me and ask me who did my surgery. She was nervous because she was having surgery at the same hospital as me and wanted my opinion. I told her who did mine and I also told her what I would do differently if I could go back in time and make more informed decisions.

My surgeon informed me that he received a call from this woman regarding my blog. Even though this is a public forum, the information I exchanged with her was done privately and there should still be some level of confidentiality. This blog is no secret, there's nothing on here that I haven't already or wouldn't say to my surgeon. If he asked me for a link to my page I would gladly give it to him. However, I feel like calling him without asking whether or not I'm ok with it first is wrong. I'm still receiving treatment from him, he's still responsible for my care.

I'm more than happy to share my experience, offer my opinion or provide encouragement but please don't take advantage of that.

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Hey there Chelie! My name is Dan and ive had a similar surgery to you and also wrote a review of my journey. But your review and posts have been incredibly moving. Everything you have been through and yet you remain so positive and continue to stay true to yourself is truly inspiring. Though I can relate to the surgery aspect I certainly cannot relate to all of your personal experiences and to hear your journey makes me pull for you so much :) A positive outlook on life can go a long way and I know your going to come out of all this with your head held high and continuing to be the uplifting person you truly are. best of luck on the rest of your journey your an incredible person :)
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Thank you Dan :) That means a lot. I definitely didn't expect any of this to happen but I think a positive attitude is the only way to get through it. I don't really believe everything happens for a reason but I do believe that you can find purpose in the things that happen to you so it's always really motivating to hear when someone else is inspired by my journey.
My jaw was badly misaligned. I had an over bite, open bite and a cross bite. I had the surgery to correct my bite and I was told by doctors that if I didn't have it I would end up with arthritis in my jaw and I could possibly lose teeth later on. The genioplasty was done for aesthetic reasons. 5 hours before my jaw surgery the resident called me and informed me that they would not be able create enough of a chin by moving the lower jaw alone and that a genioplasty would be needed to get ideal results. I figured if I was going to do it, I might as well go all the way so I agreed to the chin surgery. Insurance covered everything except the genioplasty. I've heard that if you're only looking for aesthetic results, chin implants are the better way to go.

Being Your Own Advocate

When I had my double jaw surgery I noticed, after a few days in the hospital, that groups of residents as well as my surgeon would come in my room throughout the day to look at my upper gums. I was still in too much pain and too swollen to really look at them myself so I didn't think much about what was happening (I was also full of painkillers.) My surgeon wanted to keep me a little longer and my 2 night stay turned into 8. Around maybe the third day the chief resident mentioned hyperbaric oxygen to my sister but nothing ever came of it. Then around day 5 or 6 the surgeon came in, looked at my gums and said "Oh thank god." He told me that they finally started to turn pink and that he hadn't been sleeping at night worrying about the purple color. It wasn't until that point that I really even realized there was a major issue with my gums, no one had ever said it directly to me. I was on so much medication and I was still so weak that I didn't even fully comprehend what it would have meant if the gums had stayed purple. I was discharged on day 8 and told to follow up in a week.

When I got home I looked at my upper gums and I remember thinking they looked more grey than pink and I started to worry about what that would mean. I also remember the smell everytime I lifted my upper lip. By my one week follow up I thought the tissue looked white (in reality I was looking at bone and had no idea.) I remember the surgeon and the chief resident lifting my lip and saying the gums had receded. I asked what that meant and it was only then that I was told there was a possibility I would need gum grafts or that I could lose the teeth. The surgeon called me at home the next day and mentioned how it was a shame we couldn't do hyperbaric oxygen. He had only ever encountered this situation once before and hyperbaric was able to save the tissue. I asked why it was never done and he told me it was contraindicated because I have glaucoma.

As soon as we hung up the phone, I googled hyperbaric oxygen and glaucoma. I read about studies where it actually helped to lower eye pressure in glaucoma patients. I called the surgeon right back and told him what I found. He wasn't convinced so I called my retina doctor who said that it was fine for me to have the hyperbaric treatment. I had my retina doctor call my surgeon and two days later I started hyperbaric treatment. It was too late though. The tissue was dead, we had waited too long. There were some benefits to the treatment though which I'll write about in my next post.

Much later when I found out I would need the maxillectomy, I found out the surgeon was planning to use another cadaver graft. I had already had one failed graft and I knew with my medical issues, another graft would probably fail as well. I did my research and I insisted on him using platelet rich plasma instead. I felt like my body would respond better to my own growth factor than it would to a donor graft. It's a decision I'm glad I made and I stand by it. I'm healing well now instead of going through the ordeal of another failed graft.

My point is that it is so important to be your own advicate. It's ok to question your doctors. They don't know everything. They're just people and they're not infallible. It's your body and you have every right to do your own research and make your own decisions.

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Typos

All of the typos in my blog are driving me nuts! Unfortunately that's a side effect of 2am writing sessions and there's no way to go back and edit. I promise I know how to spell advocate though :)

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3 Week Post Op

Today was my three week post op. I saw the surgeon and he said there was a little more healing since last week. He clipped off a few pieces of bone that were sticking out which sounds worse than it really was. I couldn't feel anything when he did it and he seemed really aware of how much the noise freaked me out so he waited until I was ready.

I told him I was concerned about still not having feeling back in my lower lip and chin and about not having full control of my muscles yet. He thinks it's just going to take longer because of my EDS but I'm nervous that it'll be permanent. It's hard when you can't compare yourself to the normal recovery timeline and unfortunately there's no EDS timeline to tell me what to expect.

I've also had a lot of pain and clicking in my right jaw joint since surgery. It's a little better now than it was the first month but it's definitely bothersome. The surgeon said it might be something I have to tolerate for now but that if it continues then eventually they can treat it in a non surgical way (thank god). I can handle it as long as I know there will eventually be an end to it.

I saw the prosthodontist and she had a wax mold of my new obturator for me to try. I was really impressed. This one looks way more natural. It's like the difference between wearing Steve Madden heels and then suddenly putting on your first pair of Louboutins (only way more expensive and much less fun). She said she would put a rush on the obturator so I'll be able to have it in a week which is awesome.

I've gotten used to taking the prosthetic out at night and when I'm home which is something I never thought I would be able to say. It wasn't easy but I knew eventually I would have to face it. Once I really took a look at the area and let myself understand the damage and accept the loss it became less scary. At first it was hard because I would look in the mirror and feel like I was gone and there was this horrible freak that had replaced me. Somehow I've managed to dig a little deeper and remember that I'm still there though and that person in the mirror is only temporary. I remind myself that I may not have a lot of control over my situation but if taking the obturator out will help me heal then I need to do my part, no matter how hard.

I used to have these horrible nightmares about losing all my teeth. I had them on and off for years and I would always wake up in a panick and then feel so relieved when I would realize it was just a dream. This has literally been my nightmare come true but there's something empowering about knowing that I've faced it head on and it didn't break me.

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Three weeks is not that long for nerves, if RealSelf is anything to go by.  I've read reviews from people in looots of different topics, and it seems like the recovery time for nerves varies dramatically.  I know you've seen Carol Jake's review (she had jaw surgery and was left with nerve pain for 6 months).  Six months is a long time to wait for change, and she'd completely given up, but then it happened.  She's still numb, but some tingling had returned when she last wrote.  I'm 18 months post-op from my Mommy Makeover and I'm still recovering nerves, very, very slowly.  I'll never get them all back, but every tiny patch of skin is a victory.

Sometimes I wonder, though, whether how fast the recovery is is at all correlated with how many of the nerves recover.  Like, the faster you start feeling things, the more likely you'll get it all back.  

Anyway, I'm only saying that I don't think 3 weeks is that long even for someone without EDS, so please don't give up hope on that yet!  And also, it no longer surprises me when you manage something insane, like being able to take that obturator off.  You shouldn't doubt yourself anymore.  You've proven yourself over and over again.  You are capable of anything!
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I'm three weeks out from the maxillectomy but the nerve damage is from the first jaw surgery so it's been more like 10 weeks. I definitely still have hope but I get nervous because I feel like I'm so far behind where I should be. The muscle thing really freaks me out because I haven't really heard of anyone else having that. I'm glad it's mostly numbness and not pain like Carol had, that really sounded awful. It is helpful to know that her situation pretty much resolved though. Wow 18 months seems like so long to still be waiting, how bad was your nerve damage? I've thought the same thing about recovery. Based on some of the other reviews I've read, it seems like the people who get feeling back sooner have a better recovery. Taking out the obturator felt like a big step emotionally :) I've been contemplating posting pics without it in but I haven't worked up the nerve yet.
So, my nerve damage was from a tummy tuck and breast lift (more like reconstruction).  Forgive me if you already know this.  For the tummy tuck, they make an incision just above the mons pubis, from hip to hip.  They sever all of the layers of skin, down to the fascia encasing the muscles.  For me, they sewed my rectus abdominis up the middle and put a layer of fake fascia (plastic) on top of it to fix my umbilical hernia.  At the upper end, they make an arc incision somewhat under the ribs.  The whole thing looks like an American football.  They remove all the skin and fat in the football, then connect the upper skin with the lower skin.  They just stretch all that skin down and sew it back up.  So that's a lot of nerves in there.  And unlike most breast lifts, mine was like two mini tummy tucks for my boobs, where he also reshapes the breast tissue inside and attaches it to the pecs before closing that up again.  Oh, and just like the TT, where they make a hole to lead the belly button through again, he makes a hole to put the areola and nipple through again.  So bunches of skin and nerves removed there as well, new things connected to new places.  It's a lot of trauma.  

But I knew the risks going in (thanks to this site!) and it was almost purely elective (the hernia repair wasn't, but repairing it the way I did was elective).  So I weighed very carefully the pros and cons of gaining appearance but possibly losing sensation.  I had that luxury, you know?  I would have been devastated had I lost all sensation in my nipples, but thank goodness that didn't happen!

New Obturator

Today was my appointment to get my new obturator. I don't know if I would say I was excited but I was definitely hopeful that this would be an improvement over the old one. I tried the wax mold last week and I was pretty happy with it, so I had good expectations for today's visit.

The prosthodontist must have taken it in and out at least a dozen times to make adjustments and to make sure it fit just right. It felt lighter and less bulky than the old one but it'll take a little while to really get used to. The teeth look more natural and are more centered. I feel like it changed the whole shape of my mouth though. My upper lip all the way up to my nose looks like it sinks in. I hate it. I thought this new prosthetic would make me feel more like myself but I've never felt less like myself.

The doctor assured me that everyone feels that way when they first get a new prosthetic and that it takes a few weeks to get used to. She's so compassionate and it helps make the process a little easier. I definitely feel like today was a huge step back though. I regret this surgery so much. I just want my old face back. My lips were always my best physical feature and now they look thin and droopy. I feel like this surgery ruined my face and even with reconstruction I don't think I'll ever fully look like myself again.

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Hi Chelie. I'm sorry you are so unhappy with the new obturator. I just wanted to comment on the lip issue you are having. When I had my jaws realigned I felt my top lip was further back than the bottom lip, as this had lost some tightness and drooped. I didn't like this as they looked imbalanced, so I had some filler added to the top lip and it made a great deal of difference. I'm very pleased with the way they sit now. Ok, I do need to have touch ups annually, but I just thought I'd let you know that you will be able to get more fullness in your lip and the area it above under your nose after your teeth have been sorted out if it doesn't improve. Hope this is helpful. Thinking of you and wishing you well. You have a great support following on here do you not?! Eva x
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Thanks Eva that's very reassuring! You always have great advice :) What kind of filler did you get? I feel really lucky to have met so many supportive people on here. It's definitely helping me to get through all of this! I'm very grateful for the RealSelf community
I can't remember the name of mine, maybe Restylane, but there are a few that do the same job. One word of caution though, do not ever have a permanent filler!!!! Bad news and can lead to all sorts of problems and reactions in years to come. Temporary fillers are great as long as you are ok to have them with your EDS. I'm sure you'll do your research anyway! If you do want it permanent in the future or you can't have a temporary filler, then the other option is fat transfer to the area. No foreign material, nothing for your body to reject or become allergic to and great results so lots of food for thought there and it can and will be put right so don't worry, it will be like the icing on the cake at the end of it all! Good luck lovely. x

EDS Awareness Month

So much has (and hasn’t) happened in the past few weeks that I’ll try to update without being all over the place. My last post I was upset about my new prosthetic. I seriously hated it. Speaking was so much more difficult and eating became nearly impossible. Any progress I made with drinking out of a cup went totally out the window and I felt like I had taken a huge step backward both with function and with aesthetics. Since then I’ve had the prosthetic adjusted again and I’m so much happier. My speech has improved dramatically, I’m drinking out of a cup like a boss and I’m more comfortable with the way it looks. All it took was for the doctor to add some additional lining so there wasn’t so much empty space.

I haven’t had any positive changes in the muscle tightness in my lower jaw and chin though. I was in tears at my last appointment hoping that my surgeon could explain why this was happening but he didn’t have any answers. It’s gotten to the point where it’s almost unbearable. The whole right side and part of the left side of my chin feels like it’s contracted. I can’t chew at all and I’ve lost even more weight (I'm now under 100). Whenever I clench my jaw I get a sensation that all of my teeth are loose (they’re not) and that the left side of my lip is pulling down. Touching my teeth with my tongue causes discomfort all the way down my jaw and drinking anything cold is totally out of the question. It has me so stressed out and I can’t get an answer as to what’s causing it or if it’s permanent. I’ve hit my breaking point and I really can’t live like this. I’ve dealt with chronic pain most of my life but this is by far the most distressing experience I’ve ever been through. I want to pull my own teeth out and rip my face off, I’m fully aware of how insane that sounds but that’s how intense this discomfort is. The surgeon said he would do some research so I'm praying he comes through.

As far as the bone and tissue healing go, there’s been a little improvement but it’s slowed down a lot. I asked the surgeon if we could do another treatment of platelet rich plasma and another round of hyperbaric and he seemed agreeable. It’s noninvasive and it can’t hurt. The prosthodontist said they would probably need to wire the obturator in again which I don’t see happening. I can’t even touch my teeth with my tongue, there’s no way I’m letting anyone near me with wire because where there’s wire there will eventually be wire cutters and my bizarre EDS resistance to lidocaine and Novocain.

The surgeon and I had a pretty open conversation about my feelings towards him at my last visit. He suggested I get a second opinion because he knows I don’t trust him, so I have one scheduled for next week. I think part of the reason that I get so upset with him is because out of all my doctors, there was a point where I trusted him the most. When you live with a combination of rare disorders, there are a lot of grey areas when it comes to medical treatment. You get misdiagnosed, written off as crazy and shuffled between specialists by doctors who don’t know what the hell to do with you. With all the uncertainty regarding my conditions, this was supposed to be the one thing that was black and white. When people asked me if I was nervous about the surgery I always said no, because I genuinely wasn’t. I trusted him completely. This procedure, unlike everything else in my life, was supposed to be routine. I could sit this one out and not have to micromanage my care, I got to take a break and let the doctor be the doctor. I trusted not only his skills, but his ability to make the right medical decisions for me and he let me down. The decision to change my procedure from a 3 piece lefort to a 4 piece lefort was done after I was already under anesthesia and it’s not something I would have consented to if I had a say.

With the type of EDS that I’ve been diagnosed with, there’s a high risk for vascular complications. At 27 I had a spontaneous hemorrhage in my right eye and things have been progressive since then. I’ve had to grieve the loss of the life I won’t ever get to live, one that involves having children and growing old gracefully. With the acceptance of certain sacrifices you gain an appreciation for the time you do have though. I was willing to commit 3-6 months for this procedure, but not over a year of my life. That kind of time is too valuable when you live with a vascular disorder. As I get closer to 30, so does my risk for a spontaneous arterial rupture and the average lifespan for patients with vascular EDS is only into the mid-40s. What that means for someone with my crossover variant is still unclear, but given a choice, I would have preferred he closed me back up and called it a day. I wanted to spend the last year of my 20s feeling good about myself, traveling and making sure my nieces always remember me as the fun aunt who lets them stay up late and be silly. I’m not just angry about losing my teeth, I’m angry about a risk that was taken without my consent that will cost me over a year of my life, a year I wasn’t prepared to gamble with, a year that was precious to me and to my family and friends.

Hopefully the new surgeon will have some insight into why I still have so much discomfort, and hopefully the clean slate with him will make it easier to have a more positive attitude about my appointments and my future surgeries. More than anything though I really hope that my story can help spread awareness about the serious nature of Ehlers-Danlos Syndrome. Doctors simply cannot continue treating EDS patients the same way they treat everyone else just because we appear healthy. The results of such a cavalier attitude toward the disorder are devastating to the patient. May Is EDS Awareness Month, be aware of rare!

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My dear Chelie, I am so grieved to read about your experience. Throughout my life my only true nightmare has been that I would have my front teeth knocked out. Probably that's not uncommon, although no one else has ever told me that is their worst nightmare, also. (So far, I am 64 and it has not happened. Yet.) I admire you so very much. I understand completely that THIS is not the way one expects one's life to go. You had already come to terms with your EDS, but the nightmare you have been through would have knocked most people off the edge of a cliff. I want you to know you are without doubt the bravest person I've ever heard of, or met, and as a physical therapist for almost 45 years, you may recognize that I have seen a great deal of pain and suffering. We can help some, but so many we cannot help. I know. I accept we all have our personal roads to walk and loads to carry, but I cannot say I've ever read a more outrageous and distressing story than yours. And to be so young dealing with this. However, that being said, you are FAR wiser than the majority of people I know, and a zillion light years ahead of the "baby boomers" (which group I am a part of) whom I treat who are upset about facing the normal aging process. And those who are angry because "you can't fix my 97 yr old dad"! You mentioned you are in healthcare also, but I didn't read exactly what you do. But you must know that no one "saves lives", at best we "prolong" lives, and in my work we try to "improve quality of life". It distresses me to hear people be so angry when very old people become weaker and close to their lives ending and truly unable to face it. One man of 88 was crying his eyes out saying, "I can't believe this has happened to me! I've never been sick a day in my life! I don't know how to deal with this!" It's important not to judge, but anyone who has been that fortunate SURELY must know it will not go on forever? Another 89 yr old lady developed osteoarthritis late in life and suffered with a chronically painful knee. (ONE knee, only!) Every time she came to therapy, she would cry and say, "How can this be happening to ME?! I've always done EVERYTHING RIGHT!" Bizarrely, she must actually believe that anyone can actually KNOW what is 'everything right'. And be oblivious to the impact of genetics, the environment...and so on. This was not intended to be an exposition. Simply to tell you that I truly have heard many people talk about grief and pain and loss. But I have NEVER read or heard anyone so strong and brave, knowledgeable and patient as you are. You're my HERO! All I want you to know is that I care, I am so very sorry, but that your attitude is simply EXCEPTIONAL. I honor you for your courage, for your gift of writing, for your sense of justice and fairness. You are one exceptional lady, and, by the way, even with all you have been through, you are an utterly beautiful young woman! Best wishes for your recovery, most sincerely and with love, Maggie PS I have a dear friend with EDS who has tremendous difficulty finding physicians who even understand her illness, much less are willing to treat it.
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I am a post op-orthognathic surgery patient. Has destroyed my life. While I haven't read your entire blog, I identify w much of what you say. How can I find out who your surgeon is? I will certainly keep your answer in strictest confidence...
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Hi Chelie, just checking in to see how you're doing. I wrote back in May. I'm the one with EDS that has also had problems with the surgical outcome (grossly canted and off the midline by 7-8mm), food allergies, swelling and pain. I told my husband your story and our heart goes out to you and anyone who has had a horrendous experience with this surgery. There is not a day that has gone by that I don't regret it. I'm in constant pain in my joints and face and sick from all the food allergies. Nothing has helped me overcome them. I've lost 30 lbs. I feel shaky all the time and am still not able to care for my children. One of these days I will share my story on here. I'm just too sick and depressed to do it right now. I would take back my recessed jaws and tiny airway in a minute to be out of pain, to eat normally again and to have a mouth that is on straight. Not to mention, get my life and family back. I just wanted you to know that you are not alone in what you are going through and that you have done a great service by sharing your story. I know other people are reading it and the comments and thinking twice about this surgery. Like you, my case was medically necessary and I sought the best help I could find. I actually went out of state for the orthodontic prep and the surgery. Nothing could have prepared me for this terrible outcome, the constant pain and the autoimmune issues. Like you, I asked all the right questions and trusted my doctors. If only I could go back... Kristen
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What Next?

I want to thank everyone who's reached out and shown support during this whole process and especially over the last month. I've really been struggling with my surgical complications and with my other health issues since my last update, so I'm sorry for the lack of posts or responses. Even when I'm not feeling up to posting, I still read every comment and message and they really mean the world to me :) It's so incredibly touching to know that my story has reached other people with EDS or others who have struggled with their post op results. Thank you for giving meaning to my journey.

I'll try to recap what's happened over the last month. Not much has changed regarding the issues with the muscle spasms in my chin. My surgeon, like always, had no answers and no suggestions as to what might help. I did get feedback from other doctors who suggested I go back on neurontin and that I could possibly consider botox injections to help relax the muscles. I have a CT scan scheduled for next week so we'll see if that reveals anything. In the meantime this has dramatically impacted my quality of life and I'm so afraid that it will be permanent.

I hit a plateau with the healing so last Tuesday I went for platelet rich fibrin treatment. The process is similar to the PRP I had before, except the end result is a fibrin membrane that the surgeon placed on my obturator. I've kept the obturator in all week to give the PRF a chance to work and I go back tomorrow to see if it helped. It's kind of a long shot but it's a simple procedure and there really aren't any risks so I figured it was worth a shot. If nothing else, it at least satisfied my Type A personality need to be doing something constructive :)

Over the past month I've met with a lot of really talented surgeons from the best hospitals in the area. One thing they all pretty much agree on is that I need to wait until at least October to begin reconstruction. Everyone had a different opinion of how to reconstruct though. These are some of the options:

1. Fibular free flap graft. This involves making an incision from my knee to my ankle and removing most of my fibula along with tissue, an artery and a vein from my leg. The fibula would then be used to reconstruct my jaw and the artery would be grafted to an artery in my neck in order to give the bone graft its own blood supply. The advantages to this would be that the graft would be thick enough to support implants and the graft would be vascularized which would decrease the chances that it would be reabsorbed. The disadvantages are that I would have a huge scar down my leg and a scar on my neck, recovery time would be longer, there's a risk to the donor site, there's a risk of clotting and the graft failing and because of my vascular EDS issues, there's potential for things to go really wrong.

2. Radial free flap graft. This is essentially the same thing as the fibular graft except the bone and artery are taken from the arm.

3. Tongue flap or tongue graft. This was casually thrown out there by one of the surgeons but I shot it down before he even finished his sentence. Basically what this procedure involves is sewing the tongue to the roof of the mouth for 2-3 weeks, allowing it to fuse and then surgically separating the two. My cousin had this done as a child for a cleft palate and it didn't work. He basically spent two weeks in agony for no reason. The advantage to this approach is that it would provide a tissue graft to the palate without causing any disfiguring scars. The disadvantages, well they're pretty obvious lol.

4. A bone graft from the hip or rib and a temporal graft. This would involve taking a section of bone from one of my hips or ribs and then taking a tissue graft from my head. The advantages to this approach are that the scarring would be less disfiguring than the free flap and there's less risk for vascular complications. The disadvantages are that there's a higher chance for reabsorption of the graft, rib grafts are notoriously painful and I would still be left with scars.

5. This option is hard for me to even type without crying and I burst into tears when one of the surgeons mentioned it. Even though I know he was only fulfilling his responsibility to present me with every possible option, it was still difficult to hear and that's the option of never fully reconstructing. Basically they could do minimal reconstruction with a fixed bridge. The advantage to this is that it would involve less surgery, less overall risk and most importantly, less time spent in the hospital and in recovery. The disadvantage is that the cosmetic results would be less than ideal and that I don't think I could ever feel like a whole person again without complete reconstruction.

More important than picking the reconstructive method though, is picking the right surgeon. I've consulted with quite a few surgeons, all of them excellent. One surgeon I really liked but he didn't seem to understand the significance of a vascular EDS diagnosis so he was voted off the island before I left his office. Another one told me "You'll never get your old face back, why don't you look through a magazine and pick out a new face." He also said "We'll it's not like you look grotesque with the prosthetic in." I left his office an absolute emotional wreck and after making a mental note to put him on my list of people to punch should I ever get a free pass, he was also voted off the island. A few local surgeons refused to even take my case and ultimately I was back in the office of the surgeon from Cooper that I really liked before. He brought in a partner of his that does maxillofacial surgery and plastic surgery. This was a combination that really appealed to me. What I liked about these two doctors was that they were both obviously excellent surgeons, but they weren't arrogant. They were both extremely compassionate and willing to research EDS. The fact that they were acknowledging that my EDS was a major factor made me feel instantly comfortable. They also seemed more innovative than other doctors I've met with. They suggested things like BMAC and amniotic stem cell injections. One of them also suggested I try glutamine to put on a little weight and that made me want to jump up and hug him since all my surgeon ever does is suggest I eat scrambled eggs (side note: the mere mention of scrambled eggs is now enough to send me into a full blown rage.) I've put on 3lbs with the glutamine :)

I still have one more surgeon that I have to consult with but so far I think that the best thing for me is to go with a rib and temporal graft with the doctors from Cooper. They also seemed pretty confident that they could fix my nose since it's become super wide after my other procedures. So that was a huge relief.

I would be lying if I said that I always handled my situation with grace. Sometimes I still cry in the middle of the night when I let the gravity of what's happened to me really sink in. I get angry and I yell and I occasionally let regret get the best of me and I come down really hard on myself for making the decision the have the surgery in the first place. One thing I will not do though is ask "Why me?" When I was in hyperbaric treatment I met a lot of really amazing people who had all survived something life altering. Two people in particular helped me through the experience and they both taught me something invaluable. The first is that there are children who suffer horrible things like brain tumors. We should be asking "why them?" If things like that can happen to a child, then what makes me so special? Pain is a part of the human experience, why should I be exempt?

The second thing I learned is to stop asking "What if?" You can drive yourself crazy wondering what you could have done differently. What you have to ask is "What next?" You have to wake up every day and keep moving forward. You have to look ahead at what you can do next to help yourself.

So tomorrow I'll find out if the PRF worked and if it didn't then I'll ask "What next?"

20 Comments

I'm sorry your orthognathic surgery has been such an ordeal and long process, but I really do appreciate that you put yourself out there to share this wealth of information. Thank you Chelie!
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Thank you for the update, and so glad you are feeling confident about the surgical team.  I couldn't believe some of the options they gave you, mainly because I kept thinking of all the complications with this surgery--the gigantic surgeries that were being broached seemed like asking for trouble.  Obviously you agreed.  Perhaps your options will evolve in the time left before you can start anything. 

From someone who has gone through nothing at all like what you have, I still want to  say that in my experience, my scars ended up being not a big deal.  I think that should be the least of your worries, because plastic surgeons are great at making scars that are pretty.  I thought my TT scar was huge and ugly and awful, but it doesn't even bother me anymore.  When you're happy, the scars are meaningless.  I think the reconstruction itself is the most important, and, of course, that you not die from complications.
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Not dying is definitely priority number one lol. The scars are a big deal to me though. I've seen pictures of free flap scars and they're huge, and EDS makes my scarring worse than normal. It may seem fairly insignificant in the grand scheme of things but I've already lost so much of myself to this process that the thought of having another body part permanently altered is too much. It's just another reminder of how much this has taken from from me physically and emotionally. I don't want to have to think about this period of my life everytime I want to put on a dress or a pair of shorts. I don't want to sacrifice anymore of my body to this process. I think I would feel differently if I was making the decision to have an elective procedure that I really wanted, then the scar would be worth it. Even if I was having the surgery bc of reconstruction after cancer, at least I would be able to look at the scar as something that saved my life. But all I would see when I look at it is resentment.

Platelet Rich Fibrin

Tuesday was my third PRF treatment. They seem to be helping which is great because it was such a long shot. I think the plan is to continue them as long as we keep seeing improvement. It took a little pushing but I finally got my surgeon to look into the amniotic stem cell treatment. It's expensive and there's no guarantee that it will help but I'm really hopeful that we'll be able to try it.

I'm still struggling with the muscle issues in my chin. When I smile you can actually see something snap on the left side. You can also feel it if you put your finger over it. The surgeon seemed surprised that he could actually feel it and that it wasn't something I've just been imagining for the last few months. He thinks it's scar tissue and that it could take up to a year to resolve. I'm not buying that explanation at all but there's no point in arguing with him because he doesn't actually care. I have my CT scan tomorrow so we'll see if that reveals anything. I also have two appointments with other surgeons next week so hopefully I can get someone to figure out what's causing all the discomfort. I don't have much faith in doctors at this point though.

My neurologist has suggested that I have eyelid surgery to correct the ptosis in my right eye. As much as I want the issue corrected, my jaw surgery experience has me traumatized and I'm worried I'll end up with some kind of unexpected complications that leave me looking like a cyclops. Seriously, I'll never get another date again with no teeth and one eye. It's not a good look. I guess it would save me money on contacts and eye makeup though. Actually it would save me money on makeup in general because I would just never leave my house again. I'd have to adopt a bunch of cats and live like an agoraphobe. Clearly there's a lot to consider and I'll have to look into zoning ordinances regarding how many cats I can legally own, if Max Azria would design a BCBG eyepatch for me, and whether or not I can get chocolate banana milkshakes delivered before I decide to let anyone near my eye with a scalpel. All joking aside though, I'm not sure I'm ready to deal with eyelid surgery just yet but I'll start a separate review if I decide to go through with it. Hopefully that review will be all about how awesome my plastic surgeon is and not about how a botched eye surgery turned me into an agoraphobic, cat collecting, cyclops recluse.

17 Comments

I'm sorry if this is a double post; I don't know where it went. First off, nice to meet you, albeit over the internet. Thank you so much for putting yourself out there like this, you are helping some of us more than you know. I'm tremendously sorry for all of this. You're probably sick of all the opinions, but I wanted to throw this out there on the off chance it's helpful. If you had any movement to your chin during surgery, the 'chin plate' is notorious for causing discomfort. Cramping, tightness, a feeling of strain, etc. can definitely occur. Assuming you're sporting chin hardware...I don't know if you're in a place to have it removed, but you may want to run it by your doctors. I would definitely consider getting a jab of Botox into your chin before doing anything more invasive, though. The last thing I wanted to mention is the Mayo Clinic (MN). They have done extensive facial reconstruction utilizing bones from elsewhere in the body. Wishing you peace and healing. Thank you.
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Thanks Lulu :) I've had some suspicion that it might be from the chin plate. I had an advancement genioplasty so I do have an H plate in my chin. It feels like there's a muscle or tendon snapping over the plate but I can't get anyone to take it seriously. Initially they said it was probably nerve damage and now they're saying it's scar tissue. It's really affecting my lip function as well which doesn't seem like a normal complication. I think you're right about the Botox, I was hesitant at first but hopefully it can provide some relief. If not I may push to have the plate removed. That was def helpful! Thank you :)
Hi and nice to meet you, albeit over the internet. I'm so tremendously sorry for what you're going through. I just wanted to throw something out there on the off chance it's helpful. If you had any movement/change to your chin during surgery, the 'chin plate' is notorious for causing discomfort. If you feel cramping, tightness, strain, etc. I would be inclined to think it may be the plate. I don't know if you're in a place to have it removed, but you may want to bring it up with your doctors. A shot of Botox, in your chin, would probably be a good place to start, though. We are all sincerely wishing you the best!
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What Did I Just Agree To?

The head and neck surgeon who recommend the fibular free flap graft sent me to a max face surgeon that he works with for a second opinion. I saw the max face surgeon yesterday and he agreed that the fibular graft was the best option. I was pretty adamant that I wanted the less invasive rib graft but he felt as though it would have a high chance of failing. He did suggest a possible tongue graft but I shot that down again. He also suggested doing another type of tissue graft that would involve leaving a scar on my face (thanks but no thanks).

After a lot of discussion we agreed that he would contact a vascular EDS specialist to see if I'm a candidate for the free flap, my other specialists would be consulted to make sure I have cardiac and pulmonary clearance and something needed to be done about my lower lip and chin (a new med, injections, TENS treatment or acupuncture). I left feeling overwhelmed but still hopeful.

Fast forward to today. I followed up with the head and neck surgeon this morning. He reviewed my CT scan and we talked about what the max face surgeon had to say. In the end he feels really strongly that a vascularized graft is the only option. He said the defect is too big to reconstruct using just a rib or hip. At this point I was willing to reconsider the tongue flap but he said no.

I tried so hard to make it through the appointment without tears but when we started talking about the scars I would be left with I got a little emotional. I would be left with a surgical scar from knee to ankle and another one down my neck. To the surgeon it's just a scar but to me, as a 29 year old woman who's been through facial disfigurement, it's having to sacrifice more of my body, more of myself. It's knowing that even if the surgery goes perfectly, I'll still be left with disfigurement. I look at myself in the mirror every day and I have to force myself to accept my new face, to look past the huge defect where my smile used to be and remind myself that this is not what defines me. I go through this process every single night when I remove my obturator and every single morning when I put it back in. I don't want to go through it every time I look at my leg or every time I want to pull my hair back but can't because I have a scar down my neck.

We scheduled a debridement surgery for September 26th. The plan is to remove some additional bone and possibly repair the hole in my palate. After that heals he wants to schedule the free flap surgery (for those of you unfamiliar with my story this involves removing most of my fibula, some tissue, an artery and a vein from my leg and using it to create a vascularized bone graft).

I left his office pretending I was fine but I really wasn't so I took the rest of the day off work and stayed in Philly. For some reason I felt really alone in the whole process and it hit me kind of hard. I called my dad because he's always my rock and he made me feel a little better. Then in a fairly ironic turn of events I ended up passing an animal rescue so I walked in. There were cats everywhere. I had the thought that my cat lady joke may actually become a self fulfilling prophecy. I filled out an application to foster a senior dog with medical problems. Maybe I felt some solidarity for the dog with one eye lol. Either way I think fostering special needs dogs will be a really positive thing.

It started pouring down rain so I had to walk about 10 blocks back to my car with no umbrella. It felt rather appropriate considering my day but it was also kind of cathartic and I actually felt a little better by the time I reached my car. I'm still letting it all sink in but eventually I have to come terms with the fact that the next step is going to be an incredibly difficult one. In the meantime I'll be sporting a bun and shorts all summer long while I still have nice legs :)

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I'm just so grateful they're calling in EDS specialists now.  They're taking everything seriously and doing the best they possibly can.  Hopefully they've learned the lesson you wanted them to learn, and will remember it for every other EDS patient they get.  
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I really wish that was true. They're only consulting with the EDS specialist because I insisted on it. The head and neck surgeon actually said "I don't see why it would be a factor but we'll consult anyway." He made a point to tell me how well the surgery goes in young, healthy patients with good tissue and I wanted to shake him.
My mouth is hanging open in shock.  Speechless.  Once again, you are showing everyone the importance of being your own advocate.  I'm disappointed, now, that even after all of this….  You're amazing though.  

What's the process with the doggie adoption going to be like?  Are they concerned if you're going to be away at the hospital some of the time?

Updated pics

Some of you messaged me and asked me to post updated pics so here goes. These are immediately post op and now at 5 months.

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And also, you are so beautiful.  I just looked at your new pics, of course.  If I didn't know all this stuff had happened, I would never have guessed something was wrong in your mouth.
Aww thanks :)
Words that leap to my mouth are unprintable. When is the medical community going to get on board? It took almost 30 yrs to my knowledge with fibromyalgia. Still inconsistent understanding in Med community. I love them to death and I am part of it, but it still aggravates me (that's putting it MILDLY) that so many of us have to deal with this ignorance. Thank goodness for patient educators, like you, Chelie. Sept 26 seems a long way away but with two major surgeries it is no doubt right for you to attempt to get at peak health. Hope you've some how managed to get your weight over 100 again. xo Maggie

Amniotic Stem Cells

Today was a pretty exciting day. I've been asking my surgeon to try amniotic stem cells for about a month now. He's been less than enthused due to the high cost and the fact that there hasn't been enough research to really know how effective the treatment would be. With a little persistence (and some attitude) on my part, he agreed to look into it. When I went in for my appointment this morning I was really surprised to see that he had taken the initiative to have them delivered. It felt like Christmas, well if Santa was a molecular biologist.

The stem cells are derived from amniotic fluid, so there's no ethical debate like with embryonic stem cells. They're still pluripotent but there's no risk for developing a tumor like with embryonic cells. The ones I was given came from a company called AmnioGenix, based in Tennessee. They came freeze dried in a 1mL vial and had to be thawed out over 15 minutes. I took my obturator out, the surgeon drew them into a syringe and then rather than injecting them, he just squirted them over the exposed bone and tissue. Immediately when he did this a small piece of bone fell off. I know that sounds like a bad thing but it was actually really good, underneath the bone was healthy tissue! The PRF treatments seemed to be paying off and the tissue coverage went from an area of 7mm x 12mm to 10mm x15mm in a matter of two weeks. Anyway, he squirted the stem cells over the area and then I put the obturator back in to try to seal them in. Neither of us had any idea if this was even an appropriate method of stem cell application but it seemed like a decent plan.

What has always upset me most about my situation is the way my post op care has been handled. There was no urgency to try to save the tissue and I never felt like my surgeon went above and beyond to research all the available options that might help me. I often wonder if he would be so lackadaisical if it were him going through this. Today felt like a small step forward in mending a little of my resentment for him though. I appreciated that he had gotten the stem cells and I felt incredibly grateful to have access to a treatment that most people would never get to try. I also felt profoundly thankful to whoever the woman was that made the decision to donate her stem cells.

It was a beautiful day out so I stopped for an iced latte and took a walk down to a used bookstore that I love. I felt close to the old me. I thought about what it was like that first month after surgery. I remember just being in complete agony, unable to close my lips and barely able to stand without help. I thought about my first night home from the hospital, how my sister had stayed with me and I spent hours throwing up in the bathroom with a broken jaw, desperate and in pain and with no fight left. Now here I was sipping a latte with a book in my hand.

I might be a long way from full recovery, but I'm also a long way from that night that I spent in my bathroom, ready to quit and breaking my sister's heart. This whole experience has been an exercise in patience, something I probably needed. Today might not seem like a huge victory, but it sure as hell felt like one.

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Asking sincerely, but why do your teeth have no curve at the front? Is that a dental bridge due to the complications?
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I'm assuming you haven't read the review? That's an obturator.
I'm really glad to hear that your surgeon's attitude is improving. He has a chance to make a real difference here. I hope things continue in this direction! And an iced latte! Yum, I like the sound of that! :)
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Jaw Surgery Playlist

I don't actually have anything to update but I was bored so I thought I'd share my jaw surgery playlist, enjoy!

1. "Crooked Smile" - J. Cole ft. TLC
2. "Bigmouth Strikes Again" - The Smiths
3. "Dental Care" - Owl City
4. "Girl, You Have No Faith In Medicine" - The White Stripes
5. "Broken Face" - Pixies
6. "I Wanna Be Sedated" - The Ramones
7. "If You Can't Leave It Be, Might As Well Make It Bleed" - Dashboard Confessional
8. "Novocaine Hurricane" - The Presidents of the United States of America
9. "Dentist" - Little Shop of Horrors
10. "Hospital Song" - Ben Folds Five
11. "Broken Jaw" - Foster The People
12. "Present/Infant" - Ani Difranco
13. "The Not So Pretty Princess" - Jude Christodal
14. "Grillz" - Nelly ft. Paul Wall

And just for fun…
Bonus Track: "Plastic Surgery Slumber Party" - Jeffree Star

40 Comments

CHELIE!! So good to read your latest update about the amniotic stem cells! (Many prayers for something on this order have been going up (by me). I AM glad it was the first surgeon finally trying to rescue the destruction. It is not ALL his fault (some blame has to be given to the EDS) but his cavalier way of treating you post-op has been more than a little distressing In fact, it's been d___d upsetting and I have felt your grief for many weeks now. Feeling a little sprig of hope starting. Thinking of you and praying for you...love, Maggie xox
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I think you're giving him too much credit. My EDS diagnosis was clear before my procedure, so his cavalier attitude started long before my complications. He made the decision to change my procedure to a much riskier one after I was already under anesthesia, even with the knowledge that I have EDS. He played fast and loose with my medical consent and then continued to fail me post operatively by not starting hyperbaric oxygen immediately. Yes I have EDS and yes that makes things complicated but ultimately it was his responsibility to factor that into my treatment plan. While I'm happy that he took the initiative to order the stem cells, he only did so because I pushed for it. I have yet to see him do any research or explore any treatment options that I haven't come to him with. I'm working towards forgiving him for my own sake, but I still feel as though he is responsible for what happened to me.
Hey Chelie, Speaking of a hyperbaric oxygen chamber, do you think continuing with that could still benefit you? With everything your body has going on currently (and in the next few months) I just wonder if that would help your body with healing? If insurance will cover it, and you've got the time it may be something to consider. Every little bit in the right direction can help sometimes. Cheers!

How I Cope

This isn't really an update but I've had quite a few people who've had post op complications message me and ask me how I cope with my situation and where I get my strength from. I am by no means an expert in coping (just ask my surgeon) but I'll share what works for me in the hopes that maybe it can help someone else.

I am no stronger than anyone else. I have always been the type of person who feels everything deeply. I have moments when I am completely overcome with sadness and with pain over what happened and over all the things in my life this surgery has cost me (my relationship, friendships, an awesome job opportunity, and my former face to name a few). I still have nights where I cry myself to sleep, even at 5 months post op. I'm not immune to anger, pain or sadness but I'm also not afraid of them either. I allow myself to grieve the things I need to grieve. I let myself experience all of my emotions with my whole heart.

What has helped me is learning how to compartmentalize these feelings. I don't let my negative emotions that relate to my surgery take away from the rest of my life. I wake up every day and make a decision not to let yesterday's pain ruin today. I don't let it take away from the love I have for my family, my friends and for myself. I don't take it out on the people that are close to me. I let myself love, laugh and feel happiness with the same intensity and entirety that I allow myself to grieve. I remind myself to be grateful for what I do have and I continue to have hope.

I am a survivor, not a victim. I don't feel sorry for myself, I never ask "what if?" and I never let myself believe that life dealt me an unfair hand. Life isn't about fairness the same way it isn't about only experiencing things that make you feel good. I choose to have the perspective that life itself is a gift, learn what you can from the bad experiences and use them as a way to appreciate all the good.

With a fibular free flap surgery in my near future I'm afraid of complications to my leg. I think about what it would be like if I lose function or if the incision doesn't heal and I can't do the things that I love, like yoga, running and dancing. So I do yoga on the beach, I signed up for a 5k this month and I went out dancing all night last weekend because right now I can. That may change after my next surgery and if for some reason I lose function in my leg I don't want to end up staring at my closet wishing I had gotten one last wear out of my favorite little black dress. I want to look at it and remember the night I stayed out until 3am, drinking too much champagne and loving my life. I want to get my best time yet on a 5k and I want to execute a perfect firefly pose because I don't want to have regrets.

Something awful happened to me but that doesn't mean I have to stop living my life. I can guarantee that if you wait for everything in your life to align itself before you start really living, you'll be waiting a long time.

It may sound trite and cliche but it's what I have found works for me and most days I find peace (and when it doesn't work, I just call my friend and we make ridiculously inappropriate jokes at the expense of a certain surgeon until we both laugh so hard we cry).

44 Comments

I just had jaw surgery and I sympathize with all you are going through. You are handling the pain of any surgery, let along one with negative complications very well; you are an amazing woman.\! Its easy to look at your photos and think you are a total knock out - you are - but the strength it takes to tell everyone day after day you are doing great and staying positive so they dont worry about you says just how amazing you are. Keep strong :)
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Thank you :) I hope your recovery is going well!!
Hey! There's lots of love, here. I, too, am glad I stopped by. Isn't it funny that through Chelie's misfortune, we all have found comfort and strength, and encouragement in each other! Almost like a better church. You know, people just don't want to hear your troubles, in the real world. They say, "Hi; how are you?" but they really don't know how to respond, if you tell them you are fighting an incredible battle. But here, it seems much more open and accepting. Thank you, Maggie, for your big heart. And Chelie, don't worry; maybe God DOES have a plan for you in all of this. I think Maggie's right; you are a very inspirational writer! I have some very terrible problems that I don't want to share, and knowing that someone else is battling it out, with a positive attitude, is therapeutic for me. So thank you, Cheli, for sharing your absolutely incredible story. I can tell you this: I survived my undisclosed nightmare. I survived. I won. Miss Innocent: +100,000 points. Darkness: 0 XXXOOO
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Second Thoughts and a Seventh Opinion

When I first met with the reconstructive surgeon from Jefferson and he suggested a fibular free flap, alarms started going off in my head. I only half listened to what he was saying because I was picturing myself ending up with a below the knee amputation from some never before seen complication. I remember interrupting him and telling him there was no way I would agree to something that involved moving arteries. My gut was telling me to run out of his office while I still had both legs intact. I had no doubt that this man was an excellent surgeon, but he very obviously was not factoring in my medical history and I wasn't about to make the same mistake twice.

After the initial shock wore off and I consulted with another surgeon, I began to accept that the free flap was the only option left. I was absolutely terrified but I did my best to put on a brave face for my family and friends. Outwardly I tried to be as optimistic as possible. I made jokes about being able to get a prosthetic leg that you can still wear heels with, but I wasn't telling anyone that I was quietly putting together a will and an advanced directive. Something inside me made me truly believe there was a good chance that the surgery would go wrong and I wouldn't make it off the operating table. It seemed like so much more than my body would be able to recover from. I tried repeatedly to shake the feeling and to tell myself I was overreacting but I just couldn't. I started looking for information in the EDS support groups and that's when I came across stories of people who had coronary bypass. Even though this is a completely different surgery, all the vascular EDS patients that I spoke to who had undergone bypass said they had major complications that caused their arteries to dissect or shred. Some of them made it and others, whose stories were told by family members, weren't so lucky.

I was left to face the impossible. Do I refuse the surgery and live the rest of my life feeling like less than a whole person or do I take a chance at reconstruction knowing that I may never wake up from surgery? There were so many factors to consider and so many questions I had to ask myself. What kind of life would I have if I chose not to have surgery? Would I be strong enough to endure a lifetime without reconstruction? There was still a chance that the surgery would go well and I would be able to have a normal life. Could I really put what I wanted ahead of what's best for the people that love me? Would it be selfish of me to take such a big risk? I felt overwhelmed and the stress of trying to stay strong in the face of so much uncertainty was leaving me exhausted and feeling incredibly alone.

At the request of my original surgeon, I had set up an appointment with a reconstructive surgeon from Penn. I knew he had a great reputation, but they all did and that meant nothing to me. I had no interest in having another surgery at that hospital, especially not one as major as a free flap. The day of my appointment I met with my surgeon first and it took all of my energy and self control not to lose it on him. I left and went over to the reconstructive surgeon's office. After waiting in the exam room for almost two hours my temper started to get the best of me. I hadn't slept in over 30 hours, I was angry and resentful and I made up my mind to just leave without having the consult. I had wasted enough of my life waiting around for arrogant doctors. I was about to walk out when the surgeon finally walked in. He was really friendly but I was already out of patience and in full on bitch mode, he never had a chance.

I knew I was coming off as despondent and short but I was tired of doctors. I prepared myself to answer the usual questions and to give the usual explanation of EDS and then he said something I never expected. He had already spoken to an EDS specialist and he felt as though it was best to involve someone who knew more about the disorder than either of us. He thought a fibular free flap was too drastic and then he mentioned how I'm still young and I probably want to be able to wear shorts and dresses. He wanted to wait a few months to see if I could heal more and he thought there may be a possibility that we could use a donor graft. I was completely taken off guard and I burst into tears. I had been so focused on bracing myself for things I didn't want to hear that it never even occurred to me that he might say EXACTLY what I wanted to hear. It was like my mind had completely forgotten how to process good news. I had a million questions but I couldn't stop crying long enough to articulate any of them. I must have looked like a crazy person.

I made an appointment to follow up with him in two months. I don't know if I can trust him or not but he's the first doctor to offer me any hope of getting through this with a minimally invasive approach. He's also the first one to display an understanding of what a huge emotional impact additional surgical scars would have. I made the decision to cancel my scheduled surgery at Jefferson and I've taken the free flap off the table for now. I've always tried to maintain faith that there would be a light at the end of the tunnel but this was the first time I could really picture it. I'm still not comfortable having another surgery at Penn, but I don't have to make any decisions for at least two months and that's a huge weight off my shoulders. I feel like I can finally breathe for the first time in six months.

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PS Please stop holding your breath and breathe. The world NEEDS people like you, and dying of asphyxiation would be SUCH a waste. xoxoxo Maggie
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Chelie, so sorry to have been so involved with my own healing problems, plus true difficulties with reading due to blurred vision/dry eyes post-op facial surgery, that I have not checked your posts since before this last one (8/18/14) . I had my facial surgery 8/21 so was still working right up until 11:30 pm the day before my 7 am surgery. No need to explain. I know you work in healthcare too...NOTHING matters more than documentation...certainly nothing so insignificant as major surgery in 7 hours. Nuff said about that. I am truly thrilled with your latest post, it is Sept now and I have been so worried about the scheduled tibial bone flap surgery. I hardly dared to enter your name and search for you. (I feel as though you are one of my own extremely intelligent, knowledgeable daughters and the pain of "knowing too much" is so very severe when making life changing decisions.) You are so very wise to keep on and on looking for what feels right. Of course I looked at your photo line across the top of your post before I read it, and once again I was BLOWN AWAY by your beautiful face from every angle, and thought, OMG, no one can look better than this!!!!! She's already a model or movie star, PLEASE don't mess with your beautiful face any more (unless, God help us, you have infection or intolerable pain.) Then I read your posting and I was bawling at the same time you wrote you were bawling as the newest opinion suggested "Let's wait and see what options we have BEFORE we leave unsightly scarring on your leg." How wise of him to seek a knowledgeable expert. How wise were YOU to seek opinions from the EDS group and find out how vessel transplantation worked for them. It's all amazing. Now I can recover from my own (vanity, thy name is woman) surgeries that nearly knocked me off my mental track yesterday, and continue in my prayers for your successful outcomes. Interestingly, you may want to read a response to a post wherein I wrote about how calmly I handled my brain aneurysm surgery, with my life and my cognition at risk, compared to my completely irrational response yesterday to my viewing of my facial changes, and the 10 days (only) that I gave my body to recover from 10 cosmetic procedures done a the same time in my mid-sixties. It gave me a trace more insight into how affected we all are about our body image, and facial image in particular. Human beings are fascinating creatures. Analyzing oneself can be a dangerous practice. But the RealSelf site gives so much support and so many unique POVs to consider. The calm, knowledgeable Maggie, PT, self-confident, having read 9 plastic surgery text books, received wonderful support from my loving, knowledgeable periodontist husband, & daughters who are a surgeon and a PT -- that same Maggie was a basket case just 10 days after facial surgery that has "changed my smile." We are who we are, there are no apologies nor explanations, we simply have to flow with what we are given and "deal with it". In fact, for 10 days post-op, I look very good and have every expectation for a good recovery. That of course is not the point. The point is, I got scared, and I am happily married, COULD stop working (although I am not) and probably 9/10 people would say I had a life touched with fairy dust. (We all know no one except in fiction has that.) My fear hit like a boulder rolling downhill and flattened me. I have picked myself up (thanks a great deal to the wonderfully supportive people here on RS) and used a tire pump to re-inflate my self worth, and am facing a new career beginning 9/22 (interesting choice: I used "FACING a new career") with courage and faith that my face will look "normal enough to pass muster". But, once again, back to you...you are at such a young age with a very disabling disorder and are facing so much more than I am with humor, INCREDIBLY skilled writing, working at a demanding career, and making life-changing decisions FOR WHOM NO ONE HAS THE ANSWERS. Once again, and again and again, I am astonished with your courage, not the least of which includes describing your "weaknesses" on this site, to help others cope. I genuinely believe you have a gift with writing, and a book needs to be written about your life. (if only for the EDS community, but imho, to a larger audience than that.) God bless you, your photos are an incredible vision of the beautiful beyond belief insides of what makes you, you. Love and deepest regard from your friend, Maggie xoxox PS It goes without saying that I agree with your current choices.
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Where did you have your surgery? I kno you prob still feel horrible but you look really good now!!
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Bad Timing

I went back and forth for quite a while about whether or not to post this update. It’s deeply personal and not directly related to my physical recovery. Ultimately I decided that emotional recovery is just as much a factor in this process as physical recovery and I feel as though it’s important for people to understand just how far reaching the emotional fallout of this surgery really is. There isn't a single aspect of my life that hasn't been impacted.

If you’ve been following my story then you already have an idea of how difficult this journey has been for me. It took me months to get to a point where I could face myself in a mirror and not cry, and even still I have days where I fail at that. I’ve had to learn to accept my new face and the changes and limitations it has imposed upon my previously happy life. I have persevered and endured seven months of physical and emotional hell and I have made an effort every single day not to let it beat me. I often feel like I was ripped out of my own life and shoved into someone else’s, like these experiences were never meant to be mine. They are mine though, however surreal they feel and I am determined to make the best of them with as much grace as I can muster.

I’m at a point now where my face looks more normal, I’m eating again, my weight is stable and I’m laughing and feeling more like my old self every day. I was starting to feel like maybe I made it through the worst of it and I was finally coming out the other end. I even thought maybe I was ready to try dating again. I was tentatively trying to piece my life back together and return to something that felt close to normalcy. I met a guy and there was something about him that made me feel like it was ok to put myself out there again. He was funny and sweet and he seemed like the kind of person who had enough depth to understand that while this surgery is such a huge part of my life right now, it’s only a small fraction of the person that I am.

I was completely open with him about everything. He had a ton of questions and I answered them all honestly because I’ve never been the type of person to hold anything back. I expected him to run the other way, and to be honest I wouldn’t have blamed him if he had. What I’m going through isn’t easy and most people would be overwhelmed by it. He didn’t run though. For the first time since my surgery I felt like someone was able to see past my situation and really like me for me. He made me feel comfortable and strong and like I didn’t need to be embarrassed. For the first time in seven months I felt happy and excited about the future. I remembered what it was like to be a normal girl who had butterflies over a cute guy, finally I was able to shift the focus off of my own tragedy and back onto my life.

I was on my way to dinner with my family to celebrate seven months post op when he texted me to let me know that it was in fact too much for him and he was sorry and hoped I didn’t think he was a jerk. It probably goes without saying that I absolutely did think he was a jerk, not because he was overwhelmed by what I had going on, that part was completely understandable. He was a jerk because he had pretended to be able to look past it just so that he could pry into my life out of some morbid curiosity. I had never had anyone make me feel like such a sideshow freak. I wanted to cry but if I started I knew I wouldn’t be able to stop and I still had to make it through dinner.

I managed to make it through dinner with only slightly watery eyes. I lied to my family and told them my contacts were irritating me. By the time dessert came I wanted to bawl into my bread pudding but I took a deep breath and forced myself to hold it together. I wanted my family to see how much progress I had made, how much like my old self I was. I wanted to be strong for them and I wanted them to feel like things were better. The drive back from the restaurant felt like the longest hour of my life. Tears started to slip out and run down my cheek and I knew I wasn't going to last much longer. I needed to get home so I could cry and write and get these feelings out. I could feel a lump forming in my throat and I wished I was anywhere but in a car full of people who so desperately wanted me to be happy.

As soon as I got to my car I cried. I cried the kind of full body, ugly face cry that you can only do alone or in front of your sister or best friend. He wasn't interested in me, he was curious about my story and I was foolish enough to mistake that for him accepting my situation. How could I have let myself believe that anyone would ever want me as damaged as I am? I wasn’t even crying over him really, we hadn’t known each other long enough for me to be upset about it not working out. I was crying for all the things this surgery has cost me and for all of the things I was just realizing it would eventually cost me. I cried for the life I knew I was never going to have, for every time I've had to look in a mirror and feel like less than a person, I cried for the happy ending I was stupid enough to believe in. I cried with every piece of my soul that night until I was out of breath and my eyes were swollen shut and something inside me finally gave out.

He had used the term “bad timing” so many times that I kind of wanted to punch him in the face. What he was actually saying was “I like you but you’re not worth waiting for.” I had never asked him to go through this with me and I had never looked to him for emotional support but somehow he made me feel like my experiences were a burden on him and that made me realize that I would probably never find someone who was able to see past my surgery regardless of how strong or confident I am. It also made me realize that guys like him are a dime a dozen but there are very few people who could go through what I have gone through and manage to keep their head up and their heart still open.

I always try to measure my progress against where I was immediately after surgery rather than where I was before it. It makes my goals and expectations more realistic and it gives me some perspective on how far I have come. To me, I see myself as so far from the person that was lying in a hospital bed unable to speak and I often forget how far I really am from being normal. This experience has made me realize that other people judge me by how far I have left to go and not how far I have come.

My brief venture into the dating world left me disheartened and with a brutal dose of honesty. I can't control how other people see me or how they choose to determine my worth. It will probably be a long time before I try dating again but one thing that I know with complete certainty is that I wasn't the one who wasn't enough, he was.

16 Comments

Hi! I found your story while googling for crossbite treatment for myself. I just wanted to say I wish I could come through the computer and give you a huge hug! You have been through so much and you keep charging forward. You are an amazing person! Don't ever forget that! I am in awe of your strength. Don't know about your religious beliefs, but I also said a prayer for you. I believe things are going to get better for you. Blessings and good luck to you!! :)
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Thank you so much :)
You are so brave. I went/am going thru the same thing as you, probably not as drastic but I ended up getting an infection. They did not suction enough blood from my stomach during the 8 hour surgery. I woke up in recovery vomiting blood violently. Little did anyone know, I ripped a stitch in that process got food stuck in the opening and two weeks later what do you know, I have an infection. They insert some amoxicillin where they believe the infection is and end up disliking a scab which causes me to almost bleed to death. Lost over 700 ccs of blood (which is about 4 liters of pop). Face blew up went into hypovolemic shock. And on top of all that my boyfriend who I thought was there to "support" me was on every dating website known to man. This recovery period makes you feel so ugly so trust me when I say I know exactly what you went thru and are going thru. Thank you for your blog.
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A Shift in Priorities

Last week I had my two month follow up with the reconstructive surgeon from UPenn. I went to the appointment hopeful that we would be able to set a date for my next surgery which I thought would be happening sometime next month. My last appointment I wasn't in the best of spirits but I felt like things would be more positive this time, however that positivity dissipated after waiting over an hour for the surgeon to come in the room. I think maybe I have some PTSD because sometimes just being in that hospital is difficult and the longer I wait the more emotional and agitated I become. After examining me he said he wanted me to make a follow up appointment in two months so we could reassess. He went on to explain the importance of healing in a rather condescending and patronizing manner. I was livid. I had taken off of work, driven into the city and waited over an hour for him to tell me absolutely nothing. He could have easily ascertained the same information from my surgeon who I had seen less than a week prior. I asked him how long he thought it would be before I was ready for surgery and he wouldn't commit to a timeframe but said it could be an additional year or two. I felt like I had just had the wind knocked out of me. He then told me that being ready emotionally is just as important as being ready physically. He made me feel as though he was judging me, like I wasn't strong emotionally and I resented that and him.

Today marks eight months since my initial surgery, now I am looking at possibly 1-2 more years before we can do reconstruction, an additional waiting period for that to heal, ortho again and then eventually implants which take 7-10 months. This process could drag on well into my 30's. Why was I led to believe that this would all be complete within a year or two after the first surgery? They obviously knew it would take much longer but instead of being honest about the process they waited for me to figure it out on my own (which seems to be common practice among the doctors at this hospital). I couldn't get out of the office fast enough. I had just made it to the elevator when I started to feel hot and I couldn't catch my breath. I felt like I needed to get outside before I suffocated. I stood there in the rain having a full on panic attack. I was hyperventilating so in an attempt to calm myself I sat down on a bench not realizing it was covered in water. The back of my scrubs were immediately soaked which sent me over some type of proverbial edge. For the first time I truly just wanted to give up. The thought of having to go through this process for years was more than I could bear. I was fighting a battle with no tangible end and it was exhausting. I didn't want to wake up another day and face myself without reconstruction. Though I've worked hard to make myself understand that my appearance does not define me, when I'm sitting at home, by myself at night without my obturator in, I can't help but feel less than whole. There is a piece of me, of my face, that is missing and it feels truly awful. I feel trapped, unable to eat, drink or even speak properly without the help of the prosthetic. It's as though I'm claustrophobic in my own body, in my own face and it absolutely takes its toll psychologically.

The following day I drove back into the city for an appointment with a facial pain specialist from Jefferson. Since my surgeon has made no attempt to help treat the tightness and discomfort in my chin, I've been seeing a different doctor. Initially he prescribed a low dose of nortriptyline but it didn't seem to make much difference and the negative side effects far outweighed any improvement I was seeing. He switched me to Topamax so hopefully that will result in some improvement, if not I have to try at least one more medication before we can move on to Botox injections. My appointment with the Jefferson doctor made me realize how much more comfortable I felt being in a different hospital and it helped to shape my opinion of what I should probably do next. I've been putting off the decision to sue for quite some time but I think now it may be something I need to seriously consider. Perhaps the best thing for me would be to seek the cost of past and future medical expenses so that I can pursue better care.

Throughout this process I've only really wanted two things out of my surgeon. The first and most important is that he spread awareness about Ehlers-Danlos Syndrome so that this never has to happen to anyone else. It has been eight months and I have never once walked into an appointment and had him tell me about something that he's done to help raise awareness for the disorder. I doubt he knows any more about it now than he did eight months ago and as far as I know, the case report was never even written. He has no desire to advocate and even though he has firsthand experience with just how devastating the complications from EDS can be, he feels no responsibility to pass that knowledge on to other surgeons or to other patients. I find his complete lack of interest and concern not only an insult to myself, but a complete injustice to patients everywhere. My life has been altered, permanently and immeasurably by this man and he hasn't made any effort to understand that or to prevent it from happening to another person and that's not something I'm willing to overlook.

The second thing that I expected from my surgeon was that he do everything possible to make sure I have a full recovery. He has never come to me with an idea for something that he thinks might help with healing or reconstruction. It's always me researching things and then trying to convince him to try them. Even now, I feel as though I have to fight him to continue with plasma treatments and he still doesn't provide them with any consistency. He has refused additional hyperbaric treatment and he basically wasted an opportunity to use stem cell therapy by simply squirting them over the exposed bone rather than injecting them into the surrounding tissue. He makes no effort to research anything that might help me in my recovery, not even supplements. He continually shares stories with me about vacations he’s going on or places he’s had dinner and it’s as if he’s purposely rubbing in the fact that he gets to go on living his life while mine is at a standstill because of him.

This man has given way less than 100% since before my surgery even happened. The entire situation could have been avoided with better planning, more research and respect for my right to informed consent. After the surgery I was denied hyperbaric treatment because my doctors were misinformed, having that treatment in time could have potentially saved the tissue and prevented everything that happened after. There has consistently been a lack of effort and a substandard of care on behalf of the surgeon, the residents and the hospital.

When I thought that reconstruction would be complete within a year or two, a part of me wanted to wait to pursue a lawsuit. If there was a possibility that they could make every effort to put me back together in a way that I could live with, then perhaps a lawsuit wasn’t necessary. Now, with the knowledge that this could drag on for years to come, what happens if I’m not happy with the final result? It will be too late to seek legal action. What if they can’t fix my nose with a simple alar cinch and I end up needing rhinoplasty? Who absorbs that cost? If my surgeon and the hospital refuse to put in their best effort now, how will my care be affected when they know I no longer have to option to sue?

What I have been doing for the last eight months is prioritizing the interests of a person who rarely seems to prioritize mine. Why should I worry about his feelings or his career when he’s not concerned with how his decisions have impacted the quality of my life, how they have stolen valuable time that I will never be able to get back. What I want is a doctor who is willing to try everything possible to help me get better. I shouldn't have to be continually pushing him to try treatments that he should be pursuing on his own. It only causes me more stress in an already stressful situation. I want a doctor who will research new treatments and provide me with every possible benefit. It's become obvious that this surgeon is not willing to advocate for me, but that doesn't mean I won't advocate for myself. I may not be able to put this situation behind me just yet but what I can do is put him behind me and move on to another team of doctors who will make my recovery a priority.

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HUP

1 out of 5 stars Overall rating
3 out of 5 stars Doctor's bedside manner
3 out of 5 stars Answered my questions
2 out of 5 stars After care follow-up
3 out of 5 stars Time spent with me
3 out of 5 stars Phone or email responsiveness
2 out of 5 stars Staff professionalism & courtesy
2 out of 5 stars Payment process
3 out of 5 stars Wait times
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