Nerve Damage
Posted , 6 users are following.
Well everyone I've been diagnosed with nerve damage from my lip biopsy. You was right Lily66686. My nerve dr said he is not sure if it's permanent or temporary only time will tell. He said give it a few more months to see if my lower lip numbness lessen. Also he said ENT that did the surgery lip biopsy was too comfortable and lack telling me all risks. And he said my ENT surgeon might severed a tiny piece of nerve unknowingly cause you can't see the nerve it's too small. I believe you can see the nerve anyway he is still at fault for not properly advising me of all the risk in testing for Sjogren's. And my pcp Dr Bloomberg prescribed me B12 2500 mcg vitamins for nothing cause it doesn't help with numbness. These Drs in AZ are the worst. I'm stuck with a numb lower lip and still no answer to my medical symptoms. I'm still thinking about suing my ENT.
0 likes, 10 replies
lily65668 Vette1
Posted
Hi Vette,
It's way too early to think about throwing your money away suing your ENT. Nerve damage takes at least six months to even start recovering. If you recall, I had a nasty fall about the same time as you had your biopsy, and put my teeth through my lower lip. I'm still suffering badly with pain, tingling and all sorts in my lip, and I know this is quite normal as I did the same thing two years ago. My lip had only just recovered from that one when I did it again.
And no, the ENT wouldn't have been able to see the tiny nerve endings, so your neurologist is right. If he'd cut the main mental nerve - which he would be able to see - you'd be in much more trouble than just a numb or tingly patch on your lip.
And as he said, only time will tell. Peripheral nerve damage of any kind takes a long time to heal, but it usually does heal in the end.
He's also right in saying that the ENT doctor's only fault was not to warn you that this was one of the possible after-effects before he went ahead. I think it would be difficult to build a legal case on that one though, as doctors in general can be notoriously bad at telling patients the downside of any treatment. If you tried to sue him at this point, he'd just produce all the stories of the lucky patients who didn't get nerve damage - like some people who've posted on this forum. In any case, by the time it came to court there's every chance that the damage would have started healing anyway... unless you're thinking of constantly biting your lip to make sure it doesn't heal. Which I'm quite sure you're not! In any case, a doctor appointed by the court would be able to see whether or not that had been happening.
It's been less than three months by my reckoning. Try and stop worrying about it for the time being. If there's no improvement at all in 18 months then you can start thinking about legal action. At least you've done the right thing in bringing it up and getting your symptoms on record now.
Vette1 lily65668
Posted
My neurologist said the same thing happened to him with his ENT surgeon. He wanted a cyst removed from his lower lip and chin. He even told his dr if nerve damage is the end result I don't want the surgery. His surgeon promised him I will not touch your nerve you won't get nerve damage. But after the surgery my neurologist did get nerve damage on his rightside lower lip and chin. It was numb for 8 weeks. He was so mad at his ENT surgeon. He said his numb issues was worst than minds. The surgeon told him I did not touch the nerve I moved it aside so the nerve might be compressed not severed. In my case only 10% of my left bottom lip is numb and tingling. I will try to stop thinking about. I sure hope mines get better. Since the biopsy in April it sure seems like it been numb for a very long time. I really don't want to sue my ENT I do like him and he did other surgeries on me that were successful. I just want my lip to be back 100% I miss wearing lipstick.
lily65668 Vette1
Posted
Don't worry Vette, you'll get there. Your neurologist was lucky the numbness only lasted 8 weeks. Peripheral nerve damage usually takes up to 2 years to heal. I know about it from both ends, being a former neuro nurse and also having faceplanted in the street twice in the last two years, both times putting my teeth through my bottom lip!
It tends to be one of those things where it gets better very gradually and you hardly notice it, then you suddenly realise one morning it's gone.
Margot49 Vette1
Posted
I am sorry you aree experiencing that. I had a lip biopsy done years ago and that spot on my lower lip is still half numb. My dictir didn't warn me about that either. He said it woukd go away in a few weeks, which didn't happen just lessened some. Another ENT Doctor did a parotid gland biopsy and I had no issues, however, my ENT doc at Stanford was surorised that was done because that can cause major problems due to all the nerves in the face in that area. Even though I have the symptoms of Sjorgens, my biopsies were negative. I have developed small fiber neutropathy in my feet and was told my B-12 was low and to take supplements. It is higher now but has not helped with the neuropathy. I do know nerve damage can take a long time to heal so hoping your's will resolve.
Vette1 Margot49
Posted
donna62597 Vette1
Edited
Hi, I just want to let you know, I had a lip biopsy 3 years ago and now still numb and getting bleeding blisters. I'm pretty furious about the whole situation. My dentist says its probably permanent damage, and yes, I do have SS. Good luck to you!
Vette1 donna62597
Edited
I'm 42 I don't have SS or bleeding blisters on my lip. Just 10% of my lower lip is numb. My neurologist said he doesn't know if it is permanent which is puzzling to me if he doesn't know who does?? I regret it big time of getting a lip biopsy. If I would of know it will give me nerve damage I would of never accepted it. Most of the tingling went away do you still have tingling? All folks out there if there dr wants to test for SS never never get a lip biopsy. A little history; A lip biopsy was the only option for dr's in 1940's test for SS. After my ordeal I find out online that 90% of ppl who get a lip biopsy will get nerve damage. We are part of that statistic unfortunately. Our lives are changed forever.
lily65668 Vette1
Posted
Hi Vette,
I'm glad to hear things are improving. The tingling going away is a sign of healing.
As far as I can remember, you had the biopsy done just a few weeks before I fell heavily on my face and put my top teeth through my bottom lip, causing a similar wound to a lip biopsy. My accident was on 24 April, so I estimate that would make it four months tops since your biopsy.
Maximum time for recovery from a peripheral nerve injury is usually around two years, so you're not doing at all badly if the tingling has mostly stopped already. This is why your neurologist is telling you he can't guarantee total healing - it's just too early to say.
I'm now at the stage where the large, hard lump on my bottom lip is beginning to shrink and the tingling, though still there, is much less. I'm not sure whether the area of numbness around it is shrinking.
This is the second time I've done the exact same thing in two years. It was at least 18 months before all the symptoms of the first injury cleared up (just about in time for me to do it again!) so I have every confidence that it will be the same this time for me.
I'm with you all the way on encouraging people to think long and hard before agreeing to a lip biopsy. When I got a provisional diagnosis of SS from a rheumatologist around 13 years ago, on the basis of blood markers and symptoms, I was told I could only have a definite diagnosis if I got a positive lip biopsy. I didn't even have to think about it for very long before declining. I now have a firm diagnosis from two ophthalmologists, one of whom recently claimed I had zero tears on a Schirmer's test - which I don't entirely believe, incidentally.
My own feelings about having a lip biopsy were that I wasn't too bothered about whether I got a firm diagnosis or not, since SS is mainly managed by treating the symptoms, which can be done regardless of diagnosis. However, some people find getting a firm diagnosis more reassuring, and in any case it's essential if you want to progress to heavy treatments like methotrexate or other immunosuppressants.
I hope the improvement continues for both of us.
donna62597 Vette1
Posted
Hi, not so much tingling, just once in awhile. These lip blisters are something new for me. The dentist says they aren't cold sores and not canker sores either. It's right where my biopsy was done. I feel like the lip is damaged leaving me prone to more infections. Some research suggests that maybe it's from blocked salivary glands. I am using perscription kenalog which so far after a week has done nothing. I'm with you, never get a biopsy for SS! Had I known this was going to happen I never would have gotten it! Hope you are doing well tho.
marielle71636 Vette1
Posted
Did you ever get better? I had the lip biopsy done 6 weeks ago and my lip is still numb. It hurts to talk sometimes and it is feels numb when I eat.