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.
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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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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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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Ditto Dca1961 I was told I would end up in dentures too if I did not do the surgery but didn't listen until I had cracked teeth and needed several crowns. Only then did I believe them and had the surgery at 48. NOT elective for me either.
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Numbness may be an issue, but in my case it was seriously downplayed, with percentages cited that were very encouraging in my decision to have the surgery, and also, I was not informed until the day before the surgery was scheduled, after months of prep and years of braces that there was a possibility of numbness in the tongue, and loss of taste as well, all of which happened to me, with the addition of constant nerve pain, and a speech impediment as well. I was not informed of any of this as a possible complication of this surgery. Now I constantly feel like a nail has been stuck in my tongue for the last 2 years, I can barely taste food, and speaking hurts..I was also told that this surgery was absolutely necessary, and that braces alone would not fix my issues. I don't know if I just had a terrible surgeon, but my outcome was not good. I would give anything if I could undo the decision to have gone ahead with this disaster of a surgery. And to top it off it cost me a ton of money. Yes, you are right in your comment, if you decide to have this surgery plan for the worst possible outcome, and also know that there is nothing that can be done to fix, or even alleviate any of the really terrible symptoms that you might, and probably WILL end up having for the rest of your life. Pretty much, from my experience, don't do it.
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Thanks for posting the profile pics.  You are beautiful, and your profile is perfect.  The only thing missing is a smile.  I hope that the numbness recedes a bit more so you can be happy again!
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You look beautiful, seriously.  You should post profile pics as well, though, since that is where most of the change will be.  Even back in November, when you were in terrible pain and unhappy, the change was positive and striking in your profile.  Most of the time we spend looking at ourselves will be from the front, since that's easiest, but others will see us from many angles.

Has there been any change in the numbness at all?  It seems like it's affecting your smile in one spot.  I've read that on can train that kind of stuff using a mirror or going to a therapist.
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Today is day 17 post-op. My jaws are still wired shut. I can't wait to start having mashed potato, and move on to soft diet instead of all-liquid diet. The nerve on the bottom part of my face is giving me such a hard time to sleep. At random times, there are sensations of sudden sting and burn. Not fun. My antibiotics and painkillers will be up in 3 days. Wonder how I am going to survive thru the rest of the full recovery period without them. However, I am looking forward to complete 8 weeks of recovery and being able to chew again. I will start working on the 3rd of Feb, wish me luck with it since I can barely speak clear words these days.
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Neurontin really helped me alot. And muscle relaxer. Sorry i"m just seeing your post. I ended up needing 10 weeks off from work. hope you're doing better.
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It's been three weeks since my surgery. I'm getting better each day, however I notice whenever I drink something cold or am outside in the cold, the muscle in my upper lip stiffens. Not sure why but I will give the muscle relaxer a try. Thanks Carol
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