1.5 years post-op and devastated after last visit to surgeon

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Smurfy1975
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1.5 years post-op and devastated after last visit to surgeon

#1 Postby Smurfy1975 » Sun Feb 21, 2010 7:03 pm

Let me start by introducing myself. I am a 35 year old female and had braces (brackets top and bottom) from march 2006 till march 2009. My surgery was in sept. 2008. I had a BSSO (6mm) and sliding genioplasty (3mm). This board has been quite helpful for me in the past.

My operation went textbook perfect. My recovery went pretty well too. I was operated on by one of the best surgeons in New England. The entire staff in the operating room was very experienced. The anesthesiologist had 28 years of experience, my surgeon around 25+ years, there was an experienced nurse and 2 residents.

Right after my surgery I was completely numb in my left bottom row of teeth and gums. My lower lip and chin felt tingly. I was expecting this because I was told this would happen. It took a whole year for my gums and teeth to get feeling back. However, up till now, I never got normal feeling back in my lower lip and chin.

I still had hope until I visited my jaw surgeon 4 days ago. I had to close my eyes, he took a q-tip and I had to say whether he was swiping it from left to right or up and down. Got it right 3 out of 4 times. Then he took two sticks and I had to tell him if he was holding 1 or 2 sticks again my chin. Got it wrong all 4 times. It felt like one stick all 4 times even though there were 2 sticks against my chin. He followed by telling me that I should not expect any improvement whatsoever from now on since my operation was 1.5 years ago.

Even though I appreciated his honesty, it felt like a knife had been stuck in my chest. I actually started crying. This is very unusual for me. I never cry when someone is around, let alone in a doctors office. When I finally calmed down I asked him why this happened to me. After the operation I was told that the nerve was not severed, cut or impacted and that I could expect full recovery. He followed by saying that it happens in about 5% of the patients. Well, I guess I am in that 5%. I asked him if he can just cut the nerve for me because I rather not feel anything than this. He answered that it would make things worse. Drooling and not being able to drink from a cup and such. I told him that I can't live with this and he answered that I could try taking benzodiazepines. I looked it up at home and don't really consider it a fallible option. I asked about nerve repair but he answered that it could cause more damage.

Anyway, after this whole ordeal I now feel I am left without options nor hope and am just simply devastated. I have been crying for days and know I will eventually accept it, deal with it and move on but that seems rather, well, eeeh, impossible right now.

The problem with my lower lip and chin could not be described per se as numbness. It is opposite of that. It is comparable to a leg which has fallen asleep. It's very unpleasant to touch, to have a fork/spoon touch my lip, to kiss, get (cold) wind in my face. I can't just put my down comforter near my chin, hug my husband since I don't want my chin to touch my chest, take a walk on the beach etc. I can honestly say it has impacted my daily life in a way I never thought it would. Only when I keep my mouth closed and fully relax my lips it is bearable. Laughing sucks too because it feels like a tight rubber band (lower lip) is stretched out.

Because I am so emotionally involved I can't think straight about this at the moment. I appreciate any thoughts and ideas from anyone reading this. Should I see an acupuncturist, eat a sh*t load of b-12 vitamins (read something about B-12 methyl), get a second opinion from another maxillofacial surgeon , a neuro-surgeon for nerve repair, start taking benzodiazepines (anyone who has experience with this please let me know) or just accept it for what it is and try living with it?

tdawg7669
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#2 Postby tdawg7669 » Sun Feb 21, 2010 7:23 pm

I dont know it doesnt sound like a big deal to me. It sounds better than what could/would have happened if you didnt get sugery. Of course its not happening to me so I dont know. I dont mean to be insensitive, but I think it will be something you will get used to and hardly notice.

PJ
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#3 Postby PJ » Sun Feb 21, 2010 8:44 pm

I don't have anything helpful to add, but I just want you to know that I feel really bad for you. I had the numbness in my upper lip for several months--it felt like I had a dead slug resting on my bottom lip, so I can relate to how uncomfortable it must be for you, and the constant tingling can be really annoying. I think you should definitely get a second opinion from another doctor. Don't resign yourself to living this way--at least not until you explore all of your options. I wish you all the luck in the world getting through this.

MerryCherry
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#4 Postby MerryCherry » Sun Feb 21, 2010 10:10 pm

You are not alone! I am going through the same thing... can't feel half of my lip or bottom chin. Going on 9 months POST OP! I am just like you....scared as hell to imagine it never returning. My mom is a pharmicist and she was talking to a speech patholigist who recommended for me to try a TENS UNIT. Although she couldn't guarantee any results, she said she has tried it on some of her patients' facial nerves. Since my mom already has one, I am giving it a shot ASAP. Maybe you could ask your oral surgeon if he has heard of anything involving this?

Other than that...I've got NOTHING! Its 2010...you would think technology for treatment would be advanced by now so that we could have more options!

Smurfy1975
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#5 Postby Smurfy1975 » Sun Feb 21, 2010 10:37 pm

PJ; Thanks for your kind words!

MerryCherry: I am sorry to hear you can't feel half your lip and bottom of your chin. It could still get better since you haven't hit the 1 year mark yet. I had my operation in sept. 08 and got feeling back in my teeth and gums on the lower left side, exactly 1 year later, in sept. 2009. I don't know if teeth and gums heal the same way as lips, cheeks and chin do. I looked up TENS UNIT. I had never heard of it before and am interested if anyone else on this forum has used it and if it helped. I am definitely going to look into it!

BracketRacket
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#6 Postby BracketRacket » Mon Feb 22, 2010 12:20 am

Not completely on target, but I had TENS used on my knee after surgery. Can be really interesting when it's set too high! :lol:

Used properly, I don't think it could hurt -- are you or have you been in physical therapy at all? Maybe that's an option? That's where the machine was used on me.

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DotCat
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#7 Postby DotCat » Mon Feb 22, 2010 2:25 am

I just wanted to say that the sense in my upper jaw and gums came back after longer than 2 years after the 1st surgery. I was not even hoping it would come back anymore, but it started like tingling, pain, then got the sense partially back and I believe it is still improving.

So please, do not give up. Sometimes the body just takes way too long to repair itself.
Crouzon syndrome with midface hypoplasia and class III

SARPE, 7mm expansion - 14th September 2007
Lower braces on from 15th November 2007
Upper braces on from 17th January 2008
Hyrax RPE removed - 20th March 2008
Le Fort I advancement - 1st June 2009 (with major surgical complications)
Braces off from 25th March 2010, retainers on from 29th March 2010.

ONLY 1 SURGERY TO GO! ^_____^

Smurfy1975
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#8 Postby Smurfy1975 » Mon Feb 22, 2010 10:29 am

Hi Dotcat, wow, that is AMAZING! I wonder if there are any other people who got feeling back after such a long time. I thought the cut off point for regaining normal sense was a year. Gosh, it actually gives me back a tiny bit of hope...

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bb
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#9 Postby bb » Mon Feb 22, 2010 2:14 pm

I would encourage using the tens unit - it may or may not work but it can't hurt.
I totally understand your sadness, so yes, vent, vent, vent and yes get it out of your system but then try to move on, with hope, but not obsessiveness. I'm sure you have much in your life to be thankful for.
Best of luck.
Image

Smurfy1975
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#10 Postby Smurfy1975 » Mon Feb 22, 2010 2:53 pm

Thanks BB! Good luck with your surgery in two days! I remember how I felt before surgery. I was excited but a little scared at the same time. Now that I look back on it, and also actually right after the surgery, I wondered why I made such a fuss/big thing about it in my head. It was so much easier, less stressful and less painless then I had imagined. I didn't have any pain after wards (just being uncomfortable the first two nights) wards and was back on my feet in no time. I only had to stay in the hospital for one night and slept through most of it. You'll do just fine and before you know it, you'll be on the other side :D

monarch
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#11 Postby monarch » Tue Feb 23, 2010 12:56 pm

I am sorry to hear about all the distress that you are going through, although as I read your most recent post in this thread, I think the venting and support are helping you to feel a little better. I hope that you will be able to feel at peace about all of this soon. Take some time and pamper yourself a little...a bubble bath, a massage, whatever you enjoy. This is not the end of the world!!!

And I agree that there is still hope. You are 35, my son was 18 when he had his surgery close to a year ago. He still does not yet have all the feeling back in his chin. The surgeon said it is normal...and we all know that 18-year-olds heal much faster than 35-year-olds! So relax and give yourself some more time.

ReoSity
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#12 Postby ReoSity » Fri Feb 26, 2010 6:02 pm

I have partial numbness on half my lower lip and part of my chin and it doesn't bother me at all. Occasionally when I shave or kiss someone I can feel the sensation is "off" but it doesn't stop me from living my life and functioning.

Jd
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hi

#13 Postby Jd » Sun Feb 28, 2010 1:27 am

this thread is scary as to the risks of surgery i hope you fully recover and also my brother has upper jaw lower jaw and genioplasty and at 1 year got 80 percent feeling back and at around 2.5 years he got 95 percent feeling back just a spot of numbness on his lip and one small spot on side of his chin. i still think you have a chance of nerves healing more my prayers are with you take care

Smurfy1975
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#14 Postby Smurfy1975 » Sun Feb 28, 2010 12:52 pm

Thanks everyone for your replies. It's been a week since I found out that I will probably have to live with this annoying feeling in my lower lip and chin. A few days ago I visited my ortho and he was surprised to hear that my surgeon expects no further recovery. My ortho says that there is still a chance that I will get a more "normal" feeling back over the next year(s).

My friends and family have asked me several times this week that if I knew that there would be permanent nerve damage, would I still have gone through with the surgery? The thing is, I can't really answer that question. Before my treatment I had a underdeveloped lower jaw, TMJ issues, crooked teeth and would always hold my hand in front of my mouth when smiling. I was also told by 3 different orthodontists that if I would not get any treatment, that my teeth would have started falling out one after the other (because of crowding) and would have ended up with dentures around age 40-45. My treatment wasn't possible without an operation..sooo, to make a long story short, the alternative was worse then this. Now I at least have perfect teeth, can actually put my teeth together (couldn't do that before), chew well, tmj issues are gone, my face looks great and my smile is beautiful. So I guess I CAN answer that question. Would I still have gone through with the surgery? yes.

After hearing about the permanent nerve damage I was so disappointed and sad..now, a week later, I am still sad about it but can accept it and who knows, maybe, just maybe, I will get a little more feeling back in the future.

I hope my post is not going to scare anyone nor prevent anyone from having the surgery. All operations come with a certain risk. This one is no exception. However, I think most people who went through this agree that the benefits outweigh the risk.

daffodil
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#15 Postby daffodil » Sun Feb 28, 2010 2:07 pm

Smurfy1975, thanks so much for sharing your story. I hope that as time goes by you'll be able to regain some feeling --it doesn't sound impossible!

I'm surprised that your surgeon didn't explain the risk to you. When I went for my first consultation with my surgeon, he explained at great length that permanent nerve damage was a risk I needed to be aware of and said that I might end up with part of my lips or chin numb or feeling funny like it's always cold or always for the rest of my life.

Like you, I've been told that I will end up with dentures by the time I'm in my 40s if I don't get my jaw fixed --and my jaw alignment is so bad, I'm pretty sure the upper dentures wouldn't stay in! I'm hoping the surgery is worth the tradeoff. Hopefully you'll be able to adjust even if the damage is permanent :)


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