upper & lower jaw surgery WORST life decision-

I am 48 years old. I had braces put on my teeth...

I am 48 years old. I had braces put on my teeth about 15 months prior to the surgery and knew I would have to have double jaw surgery. No research I did could have prepared me for what I went through. Nothing prepared me for feeling like I couldn't breathe after surgery and being surrounded by incompetent nurses. I was vomiting up blood and my lungs were full of blood which I struggled to cough up. When I was sent home from the hospital only two days later, I was sent home where I live alone and couldn't keep track of what medications to take when and couldn't get enough liquids in me. I highly suggest having some one with you from the moment you wake up from surgery. I ended up dehydrated and needed to go back into the ER where I was treated and released. Then began my two week stent of insomnia when I slept only an hour a night. This is also when the pain started. I felt and still do feel like I have fire ants eating my lips and chin. Though I am able to sleep now and have decent stamina during the day I take loads of non-narcotics to ease the pain. It now feels like I have tabasco sauce burning my lips. My chin is still completely numb as is my lower lip with the exception of continuing nerve pain that drives me batty. My surgeon thinks it is just the nerves "waking up" . I wish I would have known the surgery was going to be this brutal. I read many blogs before the surgery and no one mentioned this pain so I am getting quite concerned. At some point I will post before and after pics. I like my profile but not sure about the change to my face from the front. My bite is better , but not perfect. Hopefully the orthodontist will be able to correct the remaining issues, but he has only stated he will "do his best". Suffering in pain....

6 weeks post op, nerve pain continues as well as numbness, but improving

Okay, where do I begin. The swelling has gone down. I am getting a lot of compliments on my new face, but it is hard to enjoy because of the pain. However, the nerve pain continues to be extreme. Today I finally saw a neurologist who agrees with my surgeon that it is the nerves "waking up" and re-establishing their abilities. He calls the pain Trigeminal Neuralgia. My lower lip and entire chin are completely numb. It is uncertain if they will regain feeling or not and if so how long it will take. I finally went back to work but talk a little funny because of the numbness. The nerve pain increases because of all the talking. So the neurologist started me on trileptal because he didn't feel like the neurontin was working and he was probably right because I was having to take 2000mg a day to just take the edge off of the pain.

BEFORE and 5 weeks AFTER PICS

I'ts still really difficult to smile especially since my upper jaw has been moved forward so much and PLUS i have the braces on . So much discomfort. My look will supposedly change some more.

PROFILE, BEFORE and AFTER

here is a profile before and after.

Before and after

Quit my job due to pain

My job requires a significant amount of speaking. After an 8 hour day i was in so much pain all I could do is cry. I resigned. I have been now diagnosed with Trigeminal Neuralgia, also known as "suicide disease". I am hoping it gets better with time. But being 6 weeks post op I am starting to wonder if it ever will.

7 weeks excruciating burning and numbness persists

It's getting no better. The neurologists says it is unknown whether or not it will get better. My quality of life has gone to hell since this surgery. Don't let anyone tell you this surgery is great and you'll do wonderful. To think I"ll live the rest of my life like this is extremely depressing. The pain is searing and I still can't chew without biting my bottom lip. I was NOT told this was a possible outcome of surgery.

8 weeks , no change in numbness or nerve pain

The neurologist and jaw doc just want to push pain meds at me, no one cares to find out the real reason behind why all the pain. I could have a damn screw that fell out, or be allergic to the plates put in , but no one cares to find that out. They all just want to manage the symptoms and hope I go away. It's a sad state of care I"m receiving and I'm angry.

10 weeks post op, pain and numbness continues

Double jaw surgery two and a half months ago and I continue to have a chin and lower lip feeling as if it is on fire. At the same time, it is numb. I am taking lots of pills each day that is supposed to help with the pain. THey don't seem to be working at all, but they do make me very sleepy, lazy, mentally dull, and forgetful. If I could go back in time I would not have the surgery. I do not like the way I look and my life has taken a turn for the worse. My bills are piling up, I had to quit my job, my credit is being affected, and now needing to be on all these medications I am not that sharp mentally. I am very disappointed in myself for letting myself be talked into this surgery and disappointed in the medical staff for doing this to me.

12 weeks post op, losing hope

I have a neurologist, a pain specialist, a regular doctor, all working to prescribe the right meds so I can get my life back close to what it was before this jaw surgery to correct a cross bite and an underbite. Even with all three of the drugs I'm on, I never feel as good as I did before the surgery. I can't understand why a team of doctors would do something so mean and cruel to me. What did I do to them for them to ruin my life like this? They are probably going to enjoy Christmas tomorrow with their families tomorrow but I am miserable,suffering in horrible pain as if my face is on fire even with these stupid medications that make me feel extremely anxious or tired but never seem to take the pain away. But the surgeons just go on to live their lives not thinking about mine that they wrecked. They did not warn me this could be one of the risks of the jaw surgery. Shame on them. Almost 3 months I have the same amount of burning sensation of pain, some minor improvement in deep feeling in chin but no feeling in lower lip. I could pierce it or cut it off and feel nothing. Thanks for nothing doc.

NO longer suffering with pain, numbness persists

It took 3 months for the pain to go away. No more burning sensations . Strangely enough it stopped and I don't even need to take anymore medications.
My chin and lower lip is still nearly totally numb and my lower lip turns blue a lot. I don't know what causes that. I am continuing to take the vitamin suppliment Acetyl L Carnitine which is supposedly good for nerve regeneration.
I"m going to look into having nerve repair surgery for the numbness to see if that would help.

4 months post op before and after pic

My chin and lower lip are still totally numb. The swelling is all gone. I tried to find photos that were very close so you could see the difference. I have pictures of both before and after that look different but these two I think are the closest regarding lighting, position, etc.

more before and after pics

Lighting and camera settings can change the appearance significantly. So I've added these to help show the difference before and after.

before pic

This was taken 3 years before surgery.

profile pictures

5 months post op getting some tingling

My chin and lip has been very numb. However, I noticed the last few days that when I touch the left side of my chin I get tingling sensations immediately. Yay! Unfortunately it does not have the same effect on my lower lip, but I am holding out hope. At least the pain has not come back. Still not sure if all this was worth the results. My bite is good now so that is what is important. One thing I do not like though is that since moving my lower jaw back I now have grooves from the corners of my mouth down like a clown. I just spent $1300 in filler trying to erase them. Thats another review.

6 months post op. Regret my decision to have this surgery.

Due to my ongoing numbness, discomfort and changes to my face I can honestly say that I regret this decision to have the surgery 6 months ago. I was told I would lose most my bottom teeth if I didn't do the surgery. But I wish I could have researched this further to see if there was not some other way to handle the surgery. My lower lip and chin are still numb however I do have some strange tingling that occurs when the are touched. Still nothing like it was. I also don't like the aging effect the surgery has had on my face. My mouth looks older and therefore my whole face does too. My surgeon had said, "if it does age you , you can just have filler done!" I don't know if he realized how expensive it would be to have 3 syringes of filler done ever 6 months. I know I didn't.

9 months post upper and lower jaw

My chin and lip feel frozen. However, my chin and lip muscles move more than they should when I talk. I still have a lot of numbness to the chin and lip but can feel immediate tingling when they are touched. My teeth fit perfectly now which is why I went through all of this. Although, if I could go back in time I would not have had the surgery but found some other way.

10 months. I miss being able to feel my lower lip and chin.

The burning is minimal, but still feels like I have chapped lower lip. I can't feel my lower lip or chin so it makes going out to eat a bit tricky; I could have food on my face and not feel it. I also realized i can't feel my gums either. But I can feel my tongue and roof of mouth so that's good. I really appreciate all the support of everyone reading my posts and connections I've made. I like the change to the way my face looks but still would rather have the feeling back in my face.

10 months

Just after my 7 hour jaw surgery

My surgery was horrid. Here is the pic of me the day after.
Nova Southeastern University School of Oral and Maxillofacial Surgery

After a long, painful 3 months the pain has finally dissipated. The recovery was very rough for me. I finally feel without pain, numbness is still no different though. I miss being able feel my lower lip especially. The doctors are pleasant and knowledgeable but do not disclose any hint of difficulty or after surgery expectations. Knowing what to expect after waking up would have helped make an educated decision before going forward and less panic after the surgery.

4 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
2 out of 5 stars Phone or email responsiveness
5 out of 5 stars Staff professionalism & courtesy
5 out of 5 stars Payment process
4 out of 5 stars Wait times
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This is why you have to research before surgery. Im sorry you had so many problems:( I just had the same surgery two weeks ago. Only have numbness in my chin and lower lip which I hope comes back but it was a risk I was willing to take before surgery. I guess I had the opposite experience of you which shows everyone is different with this surgery. Was in the hospital for only one night and did fine with my fluids and im actually feeling pretty normal after only two weeks. You cant tell people not to go with surgery just because yours didnt end up like you thought. People go into this surgery very naive and should ask their surgeon many questions. Also the amount you paid was not a lot. This is a $50,000 + surgery and many people have to pay out of pocket for it. I hope your getting better though and everything works out. Some people have tingling for up to a few years later and then it magically starts going away. So dont lose hope
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I don't know why price matters or why you are bringing that up. My surgery was covered by insurance, my deductible was $1500. I also did ask my surgeon lots of questions before the surgery and was not told the whole truth. No where in my thread have I told anyone not to have the surgery so I don't know why you're saying that either. I said to think very carefully before and do much research and for me it was NOT worth it. I AM entitled to my own review of this surgery as this is what this website is about. I'm happy you have had an easy time with double jaw surgery and wish many more people success also.
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I am In the same boat with Carol. Our surgeries are almost identical. Tomorrow marks 3 months for me and my burning is still extreme. I am glad that you are one of the lucky ones that don't have a lot of nerve pain because quite honestly it sucks. I did all the research in the world before my surgery got done not one mentioned anything about persistant burning. Surgeries that deal with nerves seem to be easier in your late teens and early 20's. I'm 30. Would I recommend this surgery yes and no. Yes if you fall into age bracket I described and no if you are above the age of 25. Not everyone has the same experience. No research nor question mentioned a constant burning. When I got my burning my surgeon knew how to treat it meaning he had cases like this which he never told me about. He told me about pins and needles which I had along with the burning. We do heal differently but reading this post upset me quite honestly. No one is naïve going into this and Carol and I don't deserve our burning. It's not easy and it's really scary at the same time!
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Hi Carol, I am 120 days post-op from double jaw surgery. I too am 48 years old and understand exactly what you went through. I especially understood when you said that the corners of your mouth turned downwards. It is something that I'm struggling with right now. I noticed you didn't have the sagging jowls and double chin line I have though. When I look in the mirror, I look ridiculous. I can't get used to my new face. I don't want to inject fillers into my face every 3 to 6 months. What are your thoughts on getting a lower facelift? I really need a solution.
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Fillers are pricey and temporary. I am looking into a mini-face lift which would correct that jowl problem that we have ended up with since the surgery. My thoughts on it are that as soon as I can finance it, I'm doing it. Because all this pain, agony that I have gone through with the double jaw surgery it HAS to end up looking good. So if I have to throw some more money at it I will. Keep in touch, i'm curious to hear what you end up doing.
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Hi Carol and Butterfly. I'm two years plus from my double jaw and genioplasty surgery and I'm considering a lower face lift for the jowl problem as well. Seems like this happens in older patients as I'm a similar age. I know my doc does a lot of young ones so probably this is not something that crops up all that much but my jowls suddenly noticed after this procedure. I think we sadly ought to re-name it 'double jowl surgery'!!!!! Anyway, when you mention 'mini-lift', what cuts does this entail, as the advice I've been given still involves cutting around the ear for the lower face which I'm pretty scared about. I've also noticed more skin under my chin area as it cannot now tuck up under my chin, where it used to go, because I have so much more bone there now. Does that make sense? I've tried radio frequency but didn't see any change, so want something permanent doing this winter when I can hide under a hat! Please let me know the details of your procedure and thanks. It's difficult isn't it? Butterfly - it took me a year to get used to my new face, and I much prefer it so don't lose faith will you?
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Hi Carol, your story is heart-rending and I am so so sorry you are suffering so much. Yes, you DO look beautiful and I cannot imagine WHAT anyone would be giving you an odd look for? The pain sounds simply horrendous. I thought I just MIGHT give you a little hope by suggesting physical therapy? Not every therapist is the same, I guess just any other profession. But you may sincerely benefit from electrotherapy. It's called neuro-muscular electrical stimulation. The goal is to stimulate OTHER parts of the muscles and nerves. Many times agonizing pain like yours actually causes the nerve pathways to your brain to increase the area of the brain that is sensitive to pain, sort of a pain begets more pain theory. I haven't noticed in your long thread anyone suggesting TENS, another form of pain relief. Theory is that a nerve trunk can only allow so many messages to pass through at one time. So if you stimulate a nerve with variable currents, none PREDICTABLE, you can actually "overwhelm" the pain sensations and just feel the tingling of the e-stim. Over time, the pain sensory area of the brain shrinks and you are no longer as responsive to the pain. It's hard to find the right kind of therapist. Most seem to be interested in orthopedics (sports, bone and joint pain, etc) but what you want is a therapist interested in NEUROLOGY. Our local neurologists know that I love treating neuro pain so I get many referrals from the neurologists. Perhaps if you met with a neurologist, he or she may know of a PT interested in working with facial and trigeminal nerve pain. I live in SC so there is no point in coming here, there must be thousands of neuro PTs in your state. Another idea is to write to your local physical therapy association. There is one for each state, and the national association is called the American Physical Therapy Association and it is in Northern Virginia near Washington DC. Start researching. I feel very hopeful that you can be helped. I had a 39 yr old patient who'd had his face smashed in a terrible head-on collision 4 years before he was referred to me. He had SO MANY injuries, fractures of legs, back, and much much more, so no one seemed to notice his facial nerve palsy...except he could not drink from a straw, liquids would slide out his mouth, one eye could no longer wink, he could only lift one eyebrow, couldn't whistle, etc etc. The neuro sent him to me and with neuro muscular elec stim and exercises he regained all those lost skills in only 6 weeks...best of all, his wife said his "kissing" was normal again! His problem was NOT pain, I must remind you. But the point is, the cortex of the brain responds to input, good or bad, by INCREASING the available area for sensory input or motor output BASED on the individual's demand, perceived or otherwise. So with pain, one needs to increase NEUTRAL or NOT PAINFUL input to displace the huge area now devoted to pain. (Remember the old book about laughing throughout cancer treatments to decrease the pain? There is some research-driven truth to this.) Please, just to begin with, try focusing on ANYTHING other than pain. It's TERRIBLY difficult at first. But yoga, meditation, and all of those things many used to think were "hooey" are now being PROVEN to be effective. With back pain, often an epidural injection of cortisone can relieve the pain, and then reduce swelling enough so that there is a brief relief from the pain. A few months later, it can be done again, and each time the effects last longer. TMJ (temperomandibular joint pain) can be improved with pulsed ultrasound. There are therapists who practice dry needling, even acupuncture...there are so many different ways to interrupt the pathways of pain to the brain, or, (not in your case, but in others') to cause firing of motor nerves that the brain "forgot"-- by stimulating these nerves, the muscles "remember" their roles, and one can achieve some strengthening even in muscles that have "wasted" (such as a person lying in a coma for six months.) I am embarrassed by how NON-TECHNICAL and poorly presented my points are. I just want you to try other resources besides ONLY pain meds. There are physicians who can sever nerves to prevent pain from very local areas: sometimes they first inject the nerve with something that impedes sensory input (like pain, tingling, burning). If it works, sometimes and injection now and then may be all that's needed. Other times a complete nerve block works. It's like I am throwing a BOOK at you, of ill-defined ideas. I am even uncomfortable posting this as it is just a hash of ideas: but there are MANY ways to manage pain, and I do not think your physicians have suggested them all to you. Please see a neurologist first, then a physical therapist, then a pain management physician. There may be another dozen or more ways to handle this, but don't give up. The important thing is to get the pain STOPPED or lessened so that it can stop taking so much of the sensory input from the rest of your body and building up too great a space in your brain. I hope this helps you, and others who are reading and suffering the same way you are. Many blessings and please, keep hoping and trying.
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THank you MVPT so much for your feedback and suggestions. Fortunately my pain did subside about 6 months ago. Numbness with some tingling persists though. I did get some physical therapy. Later today I will post a current pick since I got my braces off and am now 9 months post op. THanks again!
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I'm glad you're so much better!! Hopefully our conversation will help others! Take care-- having TT tomorrow, prayers are so welcomed. xoxoxo Maggie
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Hi Carol, would you be so kind as to share your surgeon's name? I am in the Fort Lauderdale area and am looking for a surgeon for my son (not one of his teeth meet at this point) Your story is my worst nightmare for him...
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My 19 year old had bilateral upper and lower jaw surgery December 19, 2013. She is still having pain that is worse than before surgery and her chin is still completely numb... I am wondering if you have any suggestions on what we might be able to do to help with any of the issues that she is having... Thanks!
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Hi. I have to say my jowls look worse after this surgery. I'm trying radio frequency for them. I don't think our skin springs back like these young ones! I'll let you know if any improvement.
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yep Eva, mine do too. I don't like the way my skin sags around my chin either.
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I'm three weeks post op from my double jaw surgery and I agree that no amount of research could prepare me for what I am going through. My palate tore during surgery and I needed skin grafts to fix the damage. My total surgery time was 12 hours and I spent 8 days in the hospital. I developed oral thrush from the antibiotics, they couldn't get adequate blood flow back to my gums after surgery and now there's a strong possibility I'll lose my teeth. I have to do hyperbaric oxygen treatment 6 days a week to try to save some of the tissue but at best I'll need gum grafts and at worst I'll need implants. I also live alone and was completely unable to care for myself during the first two weeks. Having this surgery is the biggest regret of my life.
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So sorry Chelie, thanks for sharing your story. I just now read this post from march 2014. How are you doing now?
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Im going to my first post-op visit on Mon and i think i may have oral thrush. What did your surgeon do with regards to your thrush. I'm worried.
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That's great news about the tingling! :).  I'm sorry about the lines--are they the kind that are there all the time?  Or is it only when you smile?  I get lines when I smile, but I don't have them the rest of the time--especially when I'm a little over my ideal weight, like I am now :-/ ;).  Win some and lose some.  But you still look beautiful, and it looks like you've regained enough control that you can smile symmetrically now.  I can't even do that without numbness *LOL*.  Anyway, I hope the numbness continues to recede!

Peace.
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Hello TwoPlusOne, They are vertical lines that extend downward from the corners of my mouth which make me look sad :-( . I paid way too much for fillers ($1300) and they are still there. Thank you for the compliments though! I"m getting physical therapy for my mouth movements because it's still awkward to talk etc but my mouth/smile has always been crooked since I had bell's palsy when I was 9. Doesn't really bother me much though, I"m so used to it. Yes, I am eating really really healthily and think that's why all of the sudden my nerves on my chin are becoming more responsive. lip nerves still doing nothing though :-(
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Hi Carol ~ I am having the same problem you had with the nerve pain. It's been 5 weeks post op for me and it's driving me crazy. I hope it's gone as yours did. I don't mind the numbness....but you're so right. The pain is crazy! I have to exercise my face muscles and help the jaw motion as well as talk but it makes it worse. Hoping that it will go away soon. Any advice?
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Hi, the only thing that helped was Neurontin and topramil. I also started taking the suppliment Acetyl L-Carnitine which may have helped. Took 90 days but if finally went away. I was seriously getting depressed living with that burning sensation.
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Thanks Carol. Taking Neurontin only 600mg a day and being able to manage that way. Hopefully it won't get worse. I guess just time will tell. Yes, I have my depressed days. It's really tough. Hoping it will go away like your did. Thanks for the reply!
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numbness is a issue with these surgeries. No one should proceed with this surgery without excepting the risk they could be numb for life. Now its not often for that to happen but its a risk and this surgery is elective.
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Elective! Please define. I was told, if I did nothing, I would end up in dentures which would be difficult to fit due to my cross bite. I was told in my 20s I needed jaw surgery and didn't listen until I started destroying my gums! Please for what most of us went through on this site - it wasn't elective surgery for me!
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BTW - didn't have the surgery until I was 50
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and the older one has this surgery the more likely the numbness could be permanent. The younger 16-18 year old kids can recover faster. The nerves just don't heal as quickly when we get older with these types of surgeries. Now majority of these cases the numbness resolves.
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