Double Jaw Surgery, After Procrastinating for 15 Years... - Denver, CO

Like others on this site, I joined out of the...

Like others on this site, I joined out of the curiosity factor to learn more about my upcoming jaw surgery and did not plan on providing my own story. However, I've learned so much over the past few months that I hope my journey will help others, in addition to hopefully learning more myself as I struggle through some issues during my recovery.

I had jaw surgery on Nov 10, 2015 to address my cross bite and Class III malocclusion (open bite) on both my right and left sides. Only my two front teeth would touch, which made chewing progressively difficult as I got older (I swallowed a lot of food whole), caused my front teeth to buck out and chip, caused gaps and spacing in my mouth, and caused significant gum recession on certain teeth. I had slight TMJ pain on occasion, but nothing major. From the outside I looked fine; you could not tell my mouth was as mis-aligned as it was.

I had an open bite on only my left side as a child, and had braces from age 7-17 to fix it and other teeth issues. After ten years, my ortho gave up and took braces off but never proposed surgery as I could still chew on my right. However, my bite only became worse as I got older, leaving me with an open bite on both sides by the time I was in my early 20's. I went through the lengthy process of meeting with several Dr's and Ortho's to only have insurance deny the benefits. I changed jobs and insurances and the procedure was eventually approved, however, life events (marriage, job transfers, kids, career) caused me to avoid this topic for 15 years. Finally, in July of 2014 I got braces AGAIN to get this thing done and over with by the time I'm 40. It has now been a year and a half, and I still see a long road ahead. I'm thinking 41 now.

Alternatives considered: Could I get caps on my teeth to bridge the gap in bite? No, the gap is too large and I would look like I had horse teeth. Could I get some kind of tooth implant to address the bite? No, it would be too expensive and would still be dealing with the same 'large tooth' issue. Could I get some kind of device to help me chew food? One doctor actually suggested removing teeth and getting dentures. As a 20-something single woman. Seriously? There was the option of getting a device made that I would put in and take out to eat, but was told it is very obvious and I thought it would be too cumbersome that I probably wouldn't use it. Lastly, do nothing. If I did nothing, I was told by age 60 I would probably lose my teeth in front. So, I decided surgery was the best option. The malocclusion issue runs in my family, and other family members successfully had this surgery, so it made sense to me.

Benefits of the surgery: 1) I could chew my food. Wondering if this contributed to digestive issues I've experienced the last few years... 2) I could smile without being embarrassed of the gaps/buck teeth. 3) I was told jaw surgery could help my sleep apnea/hypopnea and maybe I could sleep through the night (woohoo!). Risks I worried about: 1) what my face will look like after and 2) pain.

I had double jaw surgery (Le Fort/genioplasty), my palate expanded, and lower jaw moved back slightly. The upper jaw was cut into 5 separate pieces and the lower into 3 separate pieces. I have titanium pins holding the lower jaw together, and pins and plates in the upper jaw holding those bones together. I have a plastic splint wired to the upper jaw to keep it all together, which normally comes out after 6 weeks, but my Dr is leaving it in for 8 weeks due to the extent of the surgery. I am starting week 8 and hoping I get the splint removed this week. The oral surgeon said this was one of the most difficult cases he has ever done. The orthodontist said the same. Both explained I still will most likely not have a 'perfect' bite but it will be much improved, I will need braces for another year after surgery and subsequent periodontal work.

I was well prepared, read, researched, googled, real-self'd for this surgery. I asked questions and my doctor was very forthcoming with details. But nothing prepared me for the pain. I've had other oral surgeries, multiple c-sections, other abdominal surgeries… and I would do them all over again before I did this one again. It's been a long road. My recovery has been long and painful, and 'slower than normal' according to my Dr.

Was it worth it? I'm not sure yet. Ask me again in a year. Week 8 and I still am on liquids and not chewing, still in pain, still on multiple medications, still not sleeping well, tire easily, have continuous sinus infections and swollen like a Cabbage Patch Kid. The appearance aspect was always secondary and not a priority, but currently not happy with it, at all. I realize the swelling will take months to get better. I know I'm not done yet. I will post before and after pictures later.

Surgery & Hospital

Surgery took about 6 hours, and my husband was able to see me after about 9 hours. I spent the first 24 hours in ICU, and then I was moved down to a regular room for the next two days. The hospital staff and doctor were great. The worst parts were the pain, nausea, constant bleeding and the tube that went down my throat.

Upon waking, I started choking on blood. I guess this surgery, especially the upper jaw, causes a lot of bleeding and obviously with gravity it falls right down. The doctor explained he would put a tube up my nose that would go down into my gut to siphon out the blood, as it usually causes nausea, and this would be left in overnight for the entire first day. This gave me a sore throat and made it very difficult to swallow. I didn't expect my mouth to fill up with blood so much. The nurses gave me a suction tube to use, but keeping on top of this every few minutes was exhausting. All I wanted to do was sleep, but I would wake myself up from choking after just a few minutes. It continued for the full 3 days in the hospital, but got much better after the first day. I was able to sleep a stretch of a few hours the next day and it helped a lot.

Pain management was difficult the first night. I didn't respond well to what they first gave me and my blood pressure dropped. I heard beeping, then woke to a nurse slapping me in the face telling me to 'wake up!' and and saw a room full of people. It was foggy, but I swear this happened twice. They needed to call a doctor for approval to change the pain med out. It felt like forever waiting, as my pain levels kept getting worse.

My worst fear going into this was nausea; I hate getting sick and was nervous about the tube and not being able to open my mouth. I think those first rounds of pain meds caused the nausea, and I threw up a lot of blood. This dislodged the tube in my stomach and nurses had to Xray to see where it was. They did this right in the bed as I sat up straight (high-tech!). Since it moved, they had to shove the tube back down into my gut through my nose, which was not fun.

Those were the worst parts. The next day, any and all tubes coming out of me were removed, which was uncomfortable but so glad to get them out. I was not that hungry but used a syringe to get down water, broth, smoothies and Ensure throughout the day. Make sure to ask for several syringes and those little extension tubes to take home. I needed them for at least 10 days after, and sometimes they would break.

The remaining stay was all about sleeping and pain management. I fell in love with my jaw bra, ice and Hallmark Christmas movies. I had to go to my Dr's office on the way home for a full round of X-rays and he added some rubber bands. One thing that really helped for the transition home was creating an excel sheet to keep track of my medicine for each day of the week. I re-printed this thing and used it for at least 8 weeks after surgery. I had to take pain meds, antibiotics, advil, mucinex, afrin and nasal spray several times a day.

Recovery at Home

My dr told me I would need someone to take care of me and my kids for the first 2-3 weeks. My mother flew out and was a huge help, as well as my husband. The first week I pretty much slept non-stop and they kept track of my medicines and brought me things to eat so I wouldn't have to walk up and down stairs. I was a little dizzy from the medicine. My energy came back a bit the second week and I didn't need to sleep as often, could care for myself better, but would tire quickly. My mother stayed for a full month since my husband had to travel. I probably could have used her for that fifth week, too, as I was too tired to take the kids to their activities. I've known others that had this surgery and were only down for 1-3 weeks. But my recovery is slower than normal and I'm having issues now, so this is probably not typical.

The antibiotic killed my gut and I couldn't keep anything in the first few days. This made me very weak and tired. I called my Dr and he had me come right in and stopped the antibiotic. He gave me bags of IV and from that point on, I felt much better.

I wore the jaw bra constantly to keep swelling down. You need to have a tray that makes little ice cubes or crushed ice to fit in those bags b/c the large cubes from the freezer machine hurt. The rubbermaid blue ice packs I put in my kids' lunch work well, because they don't leak at night.

I don't normally take all the pain meds after a surgery, but I relied heavily on them. My dr always gave me more when I asked, but in smaller quantities. Thank god I found an old bottle from my last c-section, b/c that got me through the past few weeks. I was on them round the clock through week 6, and finally stopped this week 9.

I lost 10lbs. I heard of people losing more, but my dr kindly reminded me that even though I was not eating a lot, I also was not moving a lot. I guess watching Hallmark movies doesn't burn much (I was addicted to those movies!). I also read that you typically lose enough weight to get you to your ideal weight. So I'd say that's about right.

The things that helped most during the recovery were:
1) keeping on top of pain meds - using the tracker sheet and setting my alarm at night to take meds on time gave me better sleep
2) freezing soup and smoothies - I need to avoid dairy and gluten, so I made batches of soup and froze them in mason jars. Having these on hand saved me. Thinning them out was needed for the syringe.
3) meal train - a dear friend set one up and friends delivered meals for a few weeks. This was a huge help, especially for my mom. I also made a few meals before I went in and froze them.
4) eating high fat foods - kept me feeling fuller. I used full fat coconut milk in smoothies and put protein powder or collagen hydrolysate from Great Lakes Gelatin to up the protein. By week 3 I could use a baby fork and spoon to get in mashed avocado, eggs or coconut milk ice cream or yogurt
5) probiotic - to keep my immune system up. the whole house got sick over the holidays, but I didn't.
6) supplements to reduce inflammation and swelling - I just started these last week since my swelling still has not gone down all the way, and I think the swelling looks a lot better this week. I bought 3 bottles at Whole Foods: Bromelain, Turmeric and Quercetin. I also made a turmeric and ginger tea when I had the energy. I wish I had started this earlier.
7) alternating hot and cold - my Dr said moist heat would encourage circulation and healing, and although it made me look a bit more swollen after I would do it, it felt good and I would feel better overall the next day. I alternated cold and hot the last few weeks.
8) salt water rinses, water pic and baby toothbrushes - oral hygiene with the splint is hard. Most have the splint on for 6 weeks. Mine is on for almost 10! I should get it off this week.

My chin is less pronounced now and I'm happy about that. As a result of the upper jaw moves, the tip of my nose got pushed up a bit and I think it makes the bump in my nose less noticeable so I'm happy with that. But overall, my cheeks are still puffy and I don't feel like I look right. I think people look at me funny. My right side is noticeably more swollen than my left. I will attach pictures from different weeks.

Need more surgery. Should I get a second opinion? Are these things normal?

I know I'm long-winded. My apologies.
I've been seeing my dr weekly and he's been great. But I've had a few issues and at Week9 now, I'm starting to wonder if this is all normal or if I should get a second opinion. I signed lots of paperwork before surgery saying I knew anything could happen, and I get that. I've been through all this with my dr and going back this week for more x-rays. He's already told me I will need another surgery. Maybe more. If anyone has had experience with these problems, please let me know:

1) severe gum recession - I still have my splint on but I can tell my gum has recessed in two areas. It's been getting worse and worse each week, where now it hurts whenever I eat (cold, hot, sweet, you name it). I'm wondering if that old oil pulling thing will help to stop it, but I don't want to swoosh coconut oil until I get this splint off. Sounds too gross otherwise.
2) bone loss - there is a section where the bone graft did not take and where the gum has gone away, I have chunks of bone falling out. Sounds lovely. I know.
3) 3rd round of antibiotics and continued sinus infections - my sinuses and cheeks feel hard and painful, with bad sinus pressure. Yet I am not congested at all and can breathe freely. It's getting better this week in terms of pain, but it's still there. I've been googling the heck out of this, and I think it's the plates. My dr said we can go back in and remove them but I need to wait another 4 weeks.
4) Water still falls out of my nose when I rinse - this happened the first couple of weeks before the stitches fully healed but it did eventually stop. I had one week where a friend made me laugh too much and they opened up again, but they eventually healed. But now the stitches feel fine, yet water comes out of my one nostril. I'm wondering if it's b/c of this hole where the bone went away. Another lovely side effect.
5) Bones pushing out near my cheeks and inside my mouth - My Dr and I did realize that there is a bone pushing out on my right side, probably causing that cheek to look bigger and more swollen. He said he will go in and shave that down in a month or so. But now when I put my finger in my mouth (as I can finally open a bit wider this week), I can feel bones pushing through the roof of my mouth in the back and sides. Overall, my mouth still hurts and is uncomfortable. Not nearly as bad as it was, but it gets worse when I lie flat instead of sleeping sitting up. I've been taking advil pm to sleep, but it has been getting better. I'm also not sure how much of this feeling is because of the splint and should be getting that off this week. Is it normal to feel bones pushing through inside? Does this pain eventually go away?
6) numbness in chin, nose, cheeks - it's not super numb, just feels a little off when I touch it. And I don't care much, b/c the other things have been more bothersome. But does this go away eventually?
7) clicking in jaw - I never had any before, but sometimes if I chew or put my head back I can feel my left jaw click. The dr took an X-ray after I mentioned this but did not see anything odd.

My doctor said he could shave down the bone in my mouth if it hurt, but last week I only found one and now I found more. He said he has to do this separate from the surgery to remove the plates and shave down the bone on the outside of my cheek because it would be too painful to do them all together. I'm wondering if the placement of the bones in the upper jaw are causing the overall swelling to not go down and problem with the sinuses. And if I should get a second opinion? Here is week 9. Not much change if you ask me.

Wk 9 - Splint removed, more bone loss and gum recession

Finally got my splint removed this week, at 9.5 weeks. I initially felt much better in that I feel like a normal person again from the outside - my mouth doesn't weird and I can speak clearly. But I attributed a lot of the soreness and uncomfortable feelings I was having to the splint, and now that it's gone, I realize it's not the splint. Something is just wrong.

My mouth and cheeks just don't feel right. I have a burning sensation in the roof of my mouth, like it is being stretched. It feels like there is something stuck in there that doesn't belong. I can't sleep on my sides or put pressure on my cheeks when laying; I can feel bones pushing out and it is not comfortable. I wake in pain; it's worse in the morning.

After the splint was removed, I had to go straight to my ortho to have a wire put back in (they cut it when they take the splint out). But my mouth was so swollen inside, they could not get the wire to the back molars and had to put it back two teeth farther to the front. But the swelling part they can't seem to get around is hard. There is hard bone under there. I don't think that will go away.

My gum recession is getting worse by the day. I still can't chew hard foods, but after the splint was removed I could start to chew soft foods on my left side. I couldn't chew on my right as the gum recession is too bad and it hurts. But now, just three days later, I can no longer chew on my left, as the gum continues to recess there. I took one of those little dentist mirrors and a flashlight in my mouth and I can see holes in my gums, and white/yellow bone peeking through. And another piece of bone fell out tonight when I was eating. This time in a different section of my mouth. I've been oil pulling the past few days, 2x a day. I read clove oil should help, too. Going to look into that.

My sinus pressure has been building each day. By day's end - around 5pm - my cheeks turn pink. I need these plates out. Am wondering if I should meet with my ENT doctor. He did an MRI on my sinuses…wondering if that would help?

My Dr was happy with my bite. It is in-line now, and I guess that was the goal of all this. Unfortunately, my gums are so bad I can't even chew. The Dr took another round of X-rays, but said we can discuss next steps after he reviews them. I see him in another week to go over those. He did mention doing one surgery next month (have to wait 3 months after surgery) to remove the plates, then another one later (time not discussed) to shave down bones. Then my ortho mentioned I would need another after all that is done to fix the bone grafting that is not taking. And I would need periodontal work to graft gum, after the braces are off.

2016 is starting to look like one big pain in the arse. I'm thinking some of 2017, too.

Second surgery on jaw planned for this week - hoping for some relief!

I am 12 weeks out from surgery and feeling better, but not 100%. I have a second surgery planned this week to remove the titanium plates, pins and screws in hopes that this relieves the sinus pressure and inflammation. The doctor will also shave down bones in my cheeks that are sticking out and a 'ridge' of bone in my mouth. I'm hoping this will give me some relief. The doctor suggested doing this in his office, but I did not feel comfortable and agreed to do it in the hospital. I would hate for something to go wrong and need to do it again later. The down time should not be as long as the original surgery; maybe a week. I should be able to go home the same day.

I started feeling much better these past few weeks, but got a head cold last week and a lot of swelling came back in my cheeks. My sinuses were killing me and no sinus medication would seem to help. The doctor will clean out my sinuses this week and send anything to a lab to see if there is infection. I think there must be, seeing my cheeks still tend to get red by the end of the day.

I saw my functional medicine doctor a few weeks ago, and he thinks that there is a staph infection that has moved from my sinuses (I had one last fall, and we thought we killed it) to my tooth bone, maybe causing some of the bone and healing issues. I will find out this week. He said the only way to kill a staph infection in the bone is with ozone. I never heard of that before.

My functional medicine Dr put me on a few things to help with the inflammation and gum loss, and I'm not sure if it's the timing of my healing or the supplements or both, but it seems to be working. FYI - for anyone going through this surgery. These things are not harmful and I wish I started on them sooner. I don't know why regular dr.'s don't recommend these things as part of the healing process:
1) Arnica cream - I got this at a 'natural' pharmacy, made from arnica montana. I rub it on my cheeks and jaw a couple times a day to help with inflammation. I heard that plastic surgeons recommend this to patients.
2) Folate - my functional medicine Dr has me on high doses of folate (10mg day) to stop the gum recession. My oral surgeon told me these areas look better in the past few weeks
3) Co Q10 - again, high dose of 100 mg 4x day for two weeks, then down to just 2x a day after that. He said this should support tissue growth.
4) Periodontic rinses - I'm using two right now. One from the oral surgeon that is supposed to kill bacteria (but contains sugar and food dyes and I don't think sounds good for my mouth, but I'm using it anyway). The other one is a natural one I found at Pharmaca containing Folate, CoQ10 and Arnica in it. I do both of these several times a day, in addition to salt water rinses.
5) Bromelain and Turmeric pills - 1 of each after each meal. My functional med Dr didn't tell me this, but I found it on someone's blog online and they said it's supposed to help with inflammation (turmeric) and surgery inflammation (bromelain)
6) Oil pulling with clove oil - I read this online, but after I brush I take about 1-2 Tbsp of coconut oil and melt it in the microwave, then add a couple drops of clove oil, swoosh for as long as I can (20 min or so) then spit out in garbage. Coconut oil is anti-microbial so it's supposed to help clean the gums and supposedly whiten teeth. The clove oil is supposed to support gum tissue growth.

If you didn't know me before you might not think I look weird, but I still feel like I get funny looks when I go out, extended stares. Some people tell me "you look fiiiiine", but I feel they are just trying to make me feel better. One friend told me it just looks like I had too much botox in my cheeks. I never had botox before. But I get the real deal when I go to the grocery. The store hires these sweet people to bag groceries and they all have some sort of mental disability and maybe as a result, absolutely no filter. They are sweet and kind, and all ask me what happened to my face? and are you ok? did you just get back from the dentist? And my 3 year old tells me I have fluffy cheeks. So toddlers and grocery store baggers - that's the real truth right there. I will attach a picture from today at 12 weeks. It doesn't look as bad when I smile. You can see one side of my face is larger than the other.

I will be getting a second opinion after this surgery. Overall, I just feel my mouth is way way too wide. My open mouth smile feels enormous. I can't seem to bite down without biting the sides of my cheeks, which may be due to the fact that I still have swelling, but I'm not sure. I feel like I'm wearing a retainer, but under my skin, making the roof of my mouth burn and feels like it's constantly being stretched. I will be getting a second opinion after this surgery. I just want these plates out ASAP.

2nd jaw surgery update

I had my 2nd surgery yesterday to remove all metal plates and screws, and also shave down bones that were protruding in my cheeks and upper jaw line. The dr took samples of some of the congestion in my sinuses to see if I had an infection that needs to be cleared. Will wait for those results. The surgery took 2 hours and I came home the same day. I am on antibiotics and norco, but I feel 10 million times better than after the first surgery. The dr said the bone grafts on the right side of my face did not take, and that is why I had so much bone loss and gum recession on that side. After I heal later in the year, I will need to have more bone graft surgery. He didn't want to do it in this same surgery.

My cheeks are big and swollen and starting to bruise, and sinuses are sore. My nose is still bleeding. I have to wear gauze under my nose using this little bra thing, since I can't blow my nose or my cheeks fill up with air. I am wearing the jaw bra with ice non stop. I am on a blenderized diet for at least this week.

Hard to say now what I will look like or if my sinuses will get relief but am hoping this worked!

3rd Surgery Scheduled: Bone Graft

It's been a while since I updated; just busy with life. I did not take a ton of pictures this time around, but will share the few I took. I had significant bruising on both cheeks from this surgery but you can't really tell in these pictures. It started around 'Day 4', but it got worse from there taking about 3 weeks to go away. I have my 3rd surgery scheduled for Aug 2 to do bone grafts. I'm hoping this will give me some improvement on the feelings and swelling on my right side.

How do I feel since the 2nd surgery? I still have a very strange, burning sensation in the roof of my mouth. I can only chew on my left side still b/c the gum recession is getting worse on the right side. I have loose teeth (front tooth and right on back through molars), that constantly 'feel' loose as well as move, meaning I have a constant throbbing sensation in the roots of those teeth. The roof of my mouth feels tender and soft on the right side. Like if I push my tongue on it, it moves. I can feel a chunk of bone on the roof of my mouth trying to fall out. I can taste blood at times, so I think it is close to coming out. I also now have a clicking on my left jaw every time I open my mouth wide (yawning, chewing) or side to side. I did not have jaw clicking before surgery like this.

How do I look since the 2nd surgery? The swelling on my right side has gone down, but I am still more swollen on one side. Some days I look better than others. When I'm smiling, the swelling kind of goes into my cheeks, and I don't think makes me look that different than before (just makes me look like i had filler or something), but when I'm not smiling, I think I look fuller, swollen, haggard. You probably can't tell from the half-face pictures, but in other pictures I see of myself, I feel like some kind of swollen, cartoon version of my old self. Like those artists on the street corners in NYC, when they draw those silly caricature pictures. Here is an update on what the 2nd surgery was supposed to address, how I'm dealing with it, and next steps:

Bones: I had bones shaved down and it has helped my appearance, however, I'm still a bit asymmetrical and more swollen on my right side. Upside is now I can sleep on that side of my face without pain. My Dr. told me when he went in, he realized the bone graft did not take on my right side. My body was building tissue around the bone graft trying to "push" this out of my body, and that was causing some of the swelling and pain on that side. And the bone graft not taking was forcing those chunks of bone out of my mouth and resulting gum recession and holes. He cleaned the area out and put in some kind of filler material until we can go back in and do bone graft surgery to try and stabilize the area (scheduled now for Aug 2).

Sinuses: I'm still having troubles here, but removing the plates and screws helped by sinuses SIGNIFICANTLY. If anyone has sinus infections that don't go away after antibiotics and constant pressure, ask your Dr. to take the plates out. I read online that folks that have allergies tend to have issues with the plates, meaning they put pressure on the sinuses. And having these removed has helped tremendously with constant pain and pressure. But I'm thinking there is a problem there and perhaps infection b/c the skin on my cheeks where my sinuses are turns pink by days' end, and swelling in my cheeks is worse on days when I'm battling seasonal allergies or happen to have a head cold. My cheeks tend to swell and then go down, swell and then go down. And I'm noticing a pattern that they tend to swell, or get inflamed, when I'm exposed to my allergy triggers. Which is pretty much a lot of the time. (and by the way, this never happened to me pre-surgery) I asked the Dr. if the movement of the upper jaw in the surgery could have moved my sinuses and causing this sensation and he said 'well, it's not supposed to, but yes, we were moving everything around in that area'. I don't know if this is normal, but I'm thinking...no.

Infection: Before the 2nd surgery, my Dr scheduled a 3D ConeBeam scan to determine if there was any infection in the sinus area. This is supposedly different than a regular x-ray in that you can see areas of infection. This came back negative, however, when he swabbed the sinuses during surgery, the lab report showed there was STILL an infection in there. I mentioned that I had a staph infection in my sinuses in the Fall that was supposedly cleared. The name of the bacteria on the lab report was different than my staph infection lab report - I googled the names of it and this bacteria was the kind you get in hospitals. After surgery, I was on Amoxicillin for 1 week, but I felt like I had a sinus infection so he put me on it for another week. Then he got the lab report and it showed that this bacteria was resistant to a number of different antibiotics, one being amoxicillin. So he put me on Clindamyacin, which I did two rounds of. I got some relief, but my end-March, I was still having congestion coming out of that side of my nose. So I booked an appt with my ENT Dr to get his opinion.

Dr. ENT had no opinion on the surgery, other than looking in my nose and letting me know there was a hole in there now (which I can feel when I breathe), but he prescribed me two antibiotic nasal sprays to take 3x a day to try and kill the infection (Gentamicin and Ampthocerin?, which taken nasally won't hurt my gut). He also put me on Beet Root Powder to try and reduce the inflammation and these other drops that are supposed to kill fungus in the body (maybe something that is lingering in my sinuses).

After taking these nasal sprays for a few weeks, I did not feel like they were working. I called my functional medicine Dr. and he put me back on this antibiotic spray I was taking for the staph infection in the Fall. This stuff is so strong, it burns and puts me in an allergy symptom fog whenever I take it, but it supposedly works much faster. I am feeling some relief after doing this (although not 100%), and am waiting for my sinus swab results to come back.

So my question is always Why. Why. Why. Because I think if you don't know Why, how do you know it won't happen again? Meaning, why did the bone graft not take? Was there an infection in there? Do I have an infection now? How do I know the bone graft will take this 2nd time around? My oral surgeon is not able to answer this, other than he will check for infection when he opens me up and if so, will just clean it out and put me on antibiotic and reschedule the surgery for later. But after talking to my functional medicine Dr, I'm convinced my staph infection in my sinuses in the fall either a) got into by tooth bone and cause the bone graft not to take, or b) maybe just weakened my immune response to the bacteria picked up in the hospital, and then it did not take. I also noted that I had to go off antibiotics in my first week b/c they were killing me and I was dehydrated, and maybe that wasn't a good idea in the end. I don't know.

I also visited with a natural dentist that is familiar alternative procedures to treating infections in tooth bone. My functional med Dr. says the only way to kill a stubborn staph infection in tooth bone is to spray it with ozone. Apparently this is commonly done in Europe but only slowing making it's way to dentist offices in the US. He wants to inject the 4 inside corners of my mouth with ozone several times before this next surgery, after surgery, and also wants to do it during surgery. I need to ask my oral surgeon if he would allow someone to come in and do this. If not, this dentist is suggesting I get a 2nd opinion with another oral surgeon in town that will work with him on this. I see my oral surgeon next week for pre-surgical x-rays. I would prefer not to switch Dr's.

My oral surgeon and ortho both tell me they have never seen anyone take so long to heal. And one thing I didn't mention is that I have been trying to address a chronic health condition called CIRS (Chronic Inflammatory Response Syndrome) for the past year and a half now. This condition is caused by exposure to mycotoxins and impacts those that have a genetic predisposition to mold allergies. This just means my body is constantly in a state of inflammation causing things like sore joints, chronic sinus infections, and also some digestive and food sensitivity issues. I've been working through a protocol, but consensus with my functional med Dr is that this has been impacting my ability to heal due to low levels of some kind of hormone called MSH. And that his has probably played a part in my delayed recovery and infections.

In the meantime, I've been researching anti-inflammatory diets and trying to steer clear of my food allergy triggers. I have also been taking a lot of turmeric to try and reduce inflammation.

Big picture, everything I was afraid of about this surgery has come true (facial asymmetry, sinus issues, continued gap in bite, and continued chewing issues) as well as problems I didn't even think would happen to me (really bad gum recession, loose teeth, jaw cracking). I still wish I never did this. I wish I worked with an ortho to just fix my gap in my teeth and lived with the open bite. However, on the upside my snoring and sleeping have improved, so I am thankful for that.

I will update on the bone graft surgery and ozone treatments later this summer. Fingers crossed. Prayers, please.

Staph, Staph Everywhere

It's been a long time since I updated. I've seen a few more doctors over the summer and have another surgery, my 4th jaw surgery in the last 12 months, scheduled for Nov 2nd.

At the end of June, the results from the sinus swab I did at my functional medicine dr came back positive for staph. He continued me on the antibiotic nasal spray (EDTA) and pretty much said I told you so and gave me 3 swabs for my jaw surgeon to use during the Aug 2 surgery. He is sure, like he was in Jan of this year, that I had a staph infection spread into my face. He wanted to send the swabs to his lab, which he trusts more than others for some reason.

During the 1st week of July, I saw another jaw surgeon in town to get a 2nd opinion. While he did not comment specifically on the success of the surgery, he could clearly see I had infection . Here I learned that ozone treatments would not work in my condition as the infection appeared to be widespread. If ozone was sprayed in there, he said it would just dissipate quickly and would not impact the affected area. He explained ozone is usually used in situations where there is a small infection in an isolated area, like in a root canal, and they can shoot it in and take care of it. Infections in my case could be treated with hyperbaric oxygen (HBO) treatments or heavy doses of antibiotics given through IV, which you can only do if you see an infectious disease doctor at a hospital. He did have concern that I had osteomyelitis, which is a staph infection of the bone. I googled this and scared the heck out of myself. It is very difficult to treat and spreads, killing the bone as it goes. The dead bone appears pitted, honeycomb like and needs to be sloughed off until live bone is reached. Obviously, you would lose all your teeth in that area in addition to the jaw bone. I called my oral surgeon and asked about both of these, and they said they would swab in Aug 2nd and we should deal with it then.

During July, all the problems I had in June continued to worsen. My sinuses were killing me and the antibiotic nasal spray wasn't doing much. My mouth continued to feel tight and the roof of my mouth tender to the touch (either with my finger or pushing with my tongue). I started taking advil on occasion to deal with the pain.

I visited my oral surgeon for the pre-op visit and explained everything above to him. Since my sinus swab came back positive for staph, maybe it got into my jaw through that hole in my sinuses that I got after the Feb surgery? And maybe that is why I'm not feeling well? He was surprised by how much the inside of my mouth hurt and as a result of everything, he decided to NOT do the bone graft surgery. Instead, he would still open me up in his office and clean out any infection, and take biopsies of the bone, tissue and tooth cavities. We would need to delay the bone graft surgery to later in the Fall after I heal from this.

We did the surgery in his office, however, I am hesitant to do surgery in his office ever again as I woke up right in the middle of it. I saw a blue apron all around my face and felt a sawing sensation against the upper jaw bone. It was so, so painful. I just remember screaming 'I'm awake!' but they gave me more meds at that point (enough to sedate a horse, per the nurse) and I don't remember anything after that. Not even my mother taking me to the bathroom after I woke up. The recovery went fairly quickly - a few days this time. He immediately put me on Clindamyacin to deal with infection, and I was on that for the whole month of August. He sent his own swabs off to his lab, and gave me the ones for my functional med dr.

About 2 weeks later the initial results came back that I DID NOT have osteomyelitis, thank God. That was my biggest concern. There were 3 swabs taken - sinus, jaw tissue and tooth cavity. One came back as staph and the other cultures were still taking, and an update should come back in a week from the lab. I asked him if I should see an infectious disease doctor to deal with the staph and he said he thought that would be 'aggressive', but I could if I wanted. He said everyone has staph in their bodies to some degree, in areas that have outside contact like the tooth or nose, and that this is normal. I told him nothing about my face or mouth looked or felt normal. But we agreed that I would circle back after I met with my functional med dr the following week to decide what to do after seeing his lab results. BTW, the lab report also showed that this bug was not susceptible to clindamyacin, so after a month on that one, I needed to switch.

My functional med dr lab results all came back with high, abnormal levels of staph in the sinus (still), jaw tissue and tooth cavities. He seemed alarmed and said I needed to see an infectious disease dr immediately. He called one for me, explained my situation, and I had an appt with one at my local hospital a few days later. Finally, I felt like I was getting somewhere.

I've seen this infectious disease doctor a couple of times since early September. He felt the reason for all this is the hole in my sinus. He said there could be staph in the nose or tooth cavity since they are exposed to the outside, but it should not be in the jaw tissue. To prove this out, he sent me for a maxillofacial CT scan with IV contrast at the hospital. They give you an IV on the CT scan table and pump iodine through it (which feels bizarre as it goes through your body). And the results of that came back the following week, that yes, there is indeed a hole in my sinuses and this is the reason for the widespread infection. He changed my antibiotic to something that would respond per the lab reports - amoxicillin - and has decided to keep me on it all through Sept and Oct, right up to surgery. Then I will switch over to the stronger IV antibiotics. I told him several times that amoxicillin normally does not work well on me. I never seem to respond to it when I get sinus infections in the past, and actually have experienced pain and congestion in my sinuses since I started. However, he explained it was the best all-around antibiotic with minimal side effects, like stomach upset, considering I needed to be on it for SO long. A lot of people can't stomach taking anything else for longer. And he wants to use the big guns when I really need them, which is during and right after surgery. So the day before my surgery, I need to go to the hospital to have a PIC line put in my upper arm. This is the part where I want to puke, as I don't do well with needles and blood. On the day of surgery, he will instruct my oral surgeon to give me antibiotic through that and then for two weeks I need to self administer an antibiotic called Ertapenem. A nurse will come to my house the first day and show me how to set it up, but then I have to do it after that. Supposedly they deliver a week's worth of meds to your house at a time, you refrigerate it and then put it in this fanny pack around your waist while it drips in for about 30 minutes a day. I am not good at this stuff. I'm sure I'm over exaggerating it and people probably do this all the time, but I can't stomach this kind of thing and I'm thinking about calling my RN friend to come help. After two weeks, if all appears well, I go back to an oral antibiotic for another 2-4 weeks. This damn bug better be dead by then. I know my gut will be.

On a side note about gut health, I know it's really bad for your body to be on antibiotics so long. I understand they just kill the inner lining of your gut and break down your immune system. Since August, I have noticed my stomach is extremely bloated and I can't seem to make it go away with diet or exercise. I'm hoping this is just from the antibiotic and will go away in time. I've also gained about 10 lbs since then and I don't really eat that bad to begin with, so hoping it's all related. But maybe I'm just eating too many cookies and looking for a scape goat, I don't know. Anyhoo, on advice from my nutritionist and naturopath, I'm taking 2 probiotics a day (medical grade), drinking kombucha, eating yogurt (dairy free) and all things fermented to try and repopulate my gut with good bacteria. Hippie dippie, I know, but I haven't gotten sick yet, so it can't hurt.

Now for the surgery... During the Aug 2nd surgery, my oral surgeon said he realized I needed way more bone for the bone graft than he thought. Initially he was going to use some from the back of my jaw with cadaver bone. Since I've had so many problems, he wants to make sure this takes and there is higher success rate using your own bone vs. cadaver. During the surgery (in hospital) his partner will take some bone from the inside of my upper left hip to use in the jaw surgery. He explained the hip is sore for a few weeks after and it is hard to walk upstairs. We were supposed to travel back East for Thanksgiving, but we had to cancel those plans since he said the walking could be too much with the hip and also the air on the airplane is dirty and could impact healing. I also noticed since some of the swelling has come down since being on antibiotic, that the right side of my face appears to be structurally sticking out farther than the rest of my face. So he's going to take some molds at my next visit to see if there is anything he can do for that. Once this heals, I may need to go back to have some bones 'smoothed' down, but he can't do that in the same surgery. And yes, braces on through early 2017 at a minimum. My teeth are still quite loose and I feel like the only thing holding them in are the braces. He explained once the bone graft takes in about 6 weeks time, the teeth should continue to get stronger in the bone but we need to leave the braces on to stabilize everything until then. I hate to say it, but I'm skeptical I will ever chew on the right side of my mouth again. I'm afraid I will lose the teeth that are really loose.

Since that August surgery, I'm still having the tightness in my upper mouth. A few more shards of bone have fallen out of that hole I have in the roof of my mouth. I also learned from my dentist during a (very long) cleaning that the antibiotic mouth rinse my oral surgeon gave me was responsible for staining my teeth so badly. It comes off, but still would have been good to know. My sinuses continue to be sore and get worse with seasonal allergies. I think this upper jaw surgery just messed them up. I'm going to do this bone graft surgery to repair the sinus hole and hopefully stop everything from mingling, but then I will be getting another opinion.

This is super long, but I appreciate all your comments and suggestions. They have really helped me.
xyz

I really like my doctor. He went above and beyond to make me feel comfortable with the process and procedure. Has a wonderful bedside manner.

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