Author Topic: PloskoPlus regarding your nerve damage post surgery  (Read 2303 times)

boyo

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PloskoPlus regarding your nerve damage post surgery
« on: August 01, 2016, 12:28:10 AM »
Is it just numbness or a neuralgia type with constant stabbing/burning sensation in parts of the upper lip? Mine is driving me crazy lately, the deep set numbness in parts of the upper lip is possible to cope with, but the never-ending burning sensation is killing me. Sometimes it's really intense, e.g. when eating and speaking which makes me never really get a break from it  :(

Have you discovered anything which can ease this s**t?

PloskoPlus

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Re: PloskoPlus regarding your nerve damage post surgery
« Reply #1 on: August 01, 2016, 04:56:14 AM »
How long has it been since your surgery?

boyo

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Re: PloskoPlus regarding your nerve damage post surgery
« Reply #2 on: August 01, 2016, 06:09:02 AM »
9 months but the burning sensation have just intensified with time. How do you cope?

PloskoPlus

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Re: PloskoPlus regarding your nerve damage post surgery
« Reply #3 on: August 02, 2016, 06:33:52 AM »
Is it just numbness or a neuralgia type with constant stabbing/burning sensation in parts of the upper lip? Mine is driving me crazy lately, the deep set numbness in parts of the upper lip is possible to cope with, but the never-ending burning sensation is killing me. Sometimes it's really intense, e.g. when eating and speaking which makes me never really get a break from it  :(

Have you discovered anything which can ease this s**t?
I know exactly how you feel.  AFAIK, you're the only other person I found to have the same symptoms.  I can tell you what happened to me over the past 22 months - no guarantee the same will happen to you.  You may do better (I hope).

My cheek and lip was just heavy and deeply numb on one side for 6 months.  I would get burning in my gum and teeth and the lip when talking or exercising, but somehow I could bear it (perhaps because I was expecting it to get better).  7 months post-op I had massive burning and pins in my lip.  I could barely tolerate it.  It sort of subsided.  10-12 months (when I wrote that cathartic post) I had a ton of tightness and burning in my lip and teeth and gums.  Month 11 - all of a sudden the lip suddenly "felt lighter" like it had been paralysed up until then.  I started taking a whole bunch of vitamins (C, D, other stuff I don't remember), massive doses of vitamin C, Acetyl-L-carnitine amino acid.  I had a lot of burning and pins in my lip over month 12.  TBH, I think it was just a coincidence.  The nerve was simply coming back on its own.  I haven't taken any supplements in at least 5 months.  I tried electric acupuncture around month 12 - I don't think it did anything.

It's been 22 months.  The changes since month 12 have not been as dramatic.  Around the 18 month mark, the teeth close to where I've had most of the numbness have stopped feeling as stiff (the felt wooden before).  But my cheek started feeling really heavy from time to time since then.  The numbness is still there, but it's more of a bruisy feeling (like I've been punched in the face) and "the lip has been injected with rubber", rather than burning.  As the bad side bothers me less, I realised that I have quite a bit of numbness on the other side, I just didn't realise it because the bad side was so bad in comparison.  I keep rolling the lip on the bad side over my teeth, which really makes things worse.  But overall, the lip is definitely loosening up.  I don't think it will ever be normal though. 

I tried Lyrica 75 mg for a week at the 18 month mark.  I don't think it did anything.  I've been told that you should go to as much as 300 mg per day. I may just try it again in a month.

I saw my hero surgeon at the 15 month mark.  He didn't even remember when exactly he did the surgery.  He just said that the infraorbital nerve failed to recover due to retraction trauma (the nerve is lifted away from the bone so the maxilla can be cut underneath), too bad.  I'm a 1 in a 100 case.  Others like me stop being bothered by it after 2 years - they think everything is OK, but the numbness is still there, they just don't realise it anymore.


tldr; the extreme burning could mean the lip will loosen up in a couple of months hopefully.
tldr2; as things get better you quickly forget how really bad they were.  I think back to last year and wonder how I didn't blow my brains out.



marcus3415

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Re: PloskoPlus regarding your nerve damage post surgery
« Reply #4 on: August 02, 2016, 06:36:54 AM »
Plosko this makes me sad. I recently had shoulder surgery and they botched something and don't know what and my hand has been half paralysed for over 2 months with no prognosis.

Have you tried gralise?

Lazlo

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Re: PloskoPlus regarding your nerve damage post surgery
« Reply #5 on: August 02, 2016, 12:04:26 PM »
I know exactly how you feel.  AFAIK, you're the only other person I found to have the same symptoms.  I can tell you what happened to me over the past 22 months - no guarantee the same will happen to you.  You may do better (I hope).

My cheek and lip was just heavy and deeply numb on one side for 6 months.  I would get burning in my gum and teeth and the lip when talking or exercising, but somehow I could bear it (perhaps because I was expecting it to get better).  7 months post-op I had massive burning and pins in my lip.  I could barely tolerate it.  It sort of subsided.  10-12 months (when I wrote that cathartic post) I had a ton of tightness and burning in my lip and teeth and gums.  Month 11 - all of a sudden the lip suddenly "felt lighter" like it had been paralysed up until then.  I started taking a whole bunch of vitamins (C, D, other stuff I don't remember), massive doses of vitamin C, Acetyl-L-carnitine amino acid.  I had a lot of burning and pins in my lip over month 12.  TBH, I think it was just a coincidence.  The nerve was simply coming back on its own.  I haven't taken any supplements in at least 5 months.  I tried electric acupuncture around month 12 - I don't think it did anything.

It's been 22 months.  The changes since month 12 have not been as dramatic.  Around the 18 month mark, the teeth close to where I've had most of the numbness have stopped feeling as stiff (the felt wooden before).  But my cheek started feeling really heavy from time to time since then.  The numbness is still there, but it's more of a bruisy feeling (like I've been punched in the face) and "the lip has been injected with rubber", rather than burning.  As the bad side bothers me less, I realised that I have quite a bit of numbness on the other side, I just didn't realise it because the bad side was so bad in comparison.  I keep rolling the lip on the bad side over my teeth, which really makes things worse.  But overall, the lip is definitely loosening up.  I don't think it will ever be normal though. 

I tried Lyrica 75 mg for a week at the 18 month mark.  I don't think it did anything.  I've been told that you should go to as much as 300 mg per day. I may just try it again in a month.

I saw my hero surgeon at the 15 month mark.  He didn't even remember when exactly he did the surgery.  He just said that the infraorbital nerve failed to recover due to retraction trauma (the nerve is lifted away from the bone so the maxilla can be cut underneath), too bad.  I'm a 1 in a 100 case.  Others like me stop being bothered by it after 2 years - they think everything is OK, but the numbness is still there, they just don't realise it anymore.


tldr; the extreme burning could mean the lip will loosen up in a couple of months hopefully.
tldr2; as things get better you quickly forget how really bad they were.  I think back to last year and wonder how I didn't blow my brains out.

yeah man i realize you got a really bad deal.  I'm sorry I was a bit insensitive before.  I dunno you're thinking about Dr. Sinn too. See, if I ignore what GJ and you said about the surgery being botched, I actually am in great shape from the bite and aesthetics point of view.

I mean i have to lose a lot of weight and swelling needs to go down. But otherwise I think it's "okay" like i'm satisfied maybe 7/10 which isn't all bad. Stupidjaws results are so spectacular that he's really my guide. But hey if my surgery is botched, I'm totally getting a redo on it.

JimmyTheGent

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Re: PloskoPlus regarding your nerve damage post surgery
« Reply #6 on: August 02, 2016, 01:54:09 PM »
Plosko this makes me sad. I recently had shoulder surgery and they botched something and don't know what and my hand has been half paralysed for over 2 months with no prognosis.

Have you tried gralise?

There is a nerve that is in between the elbow somewhere that can pop out of place and cause numbness in the hand.  Have that checked out because they can operate and put it back where it belongs and you might regain some feeling.  This nerve can become dislodged simply by sitting at a desk with your elbow on the desk and your hand under your chin so maybe the way they positioned you during surgery made it pop out of place. 
The more I learn about the gamble that is jaw surgery the more afraid I become!!!   :-(

marcus3415

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Re: PloskoPlus regarding your nerve damage post surgery
« Reply #7 on: August 02, 2016, 05:17:26 PM »
are you referring to the median or radial nerve? they did an mri on my arm but not my elbow and nerve test. its really terrible