Living with Neuropathy - Welcome to the group

Hello Jay @mzhobbsnomorepain, I would like to add my welcome to Connect along with @harley22 and others. I'm glad that you have found Connect. There is a wealth of information here shared by members who share your struggle with neuropathy. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Probably the best suggestion I have is to learn as much as you can about your condition and what treatments are available that may provide some relief. One of the best sites to learn more about neuropathy is the Foundation for Peripheral Neuropathy - https://www.foundationforpn.org/.

You also might want to scan through the different discussions in the Neuropathy Support Group to see if there are other discussions that might interest you. Here is a list of the discussions - https://connect.mayoclinic.org/group/neuropathy/.

If you don't mind sharing, which symptoms are the most difficult for you to deal with?

Welcome @denisefraser, Sorry to hear the oral surgery went sideways. I can't imagine how awful it is to have that happen and the ensuing struggle to find some relief. You might want to scan through the discussions on Trigeminal Neuralgia to learn what others have shared - https://connect.mayoclinic.org/search/discussions/?search=Trigeminal%20Neuralgia.

I think @loriesco and @serita may have some thoughts to share on your pain following oral surgery. @serita posted a similar discussion that might be helpful:
-- Shooting pains in the head after getting a tooth implant:
https://connect.mayoclinic.org/discussion/shooting-pains-in-the-head-after-getting-a-tooth-implant/.
Can you provide an update after you meet with the neurosurgeon?

@denisefraser and @johnbishop, I hope this message finds you,
(I get a little lost when responding to threads and replies!) after experiencing trigeminal neuralgia, I can substantiate it is the most awful pain! For me, it showed up like a throbbing migraine. Opioids which I already take for degenerative disc condition were the perfect solution to get me through the migraine like attack. It totally took me down for example an afternoon and then it would subside to a lower threshold pain only to return again in an unpredictable manner. This went on for a couple months I believe in everyone’s case in all matters there are reasons why these things happen. I believe they can be resolved , if we get to the bottom of the matter. But the bottom of the matter can be as elusive as hell. If you don’t know, women can have extra roots in their teeth, and it takes exploration of a specialist called an endodontist. When I was younger, I had a couple of these and so my really expensive dentist would have to send me to the even more expensive endodontist, where he would remove the extra that still remain in my gum. In addition, I had a kind of bone problem below two teeth in my gum where I had experienced to roots that died, or two teeth that died, and they had to be extracted there was something about the bone , which requires attention once every two decades and that causes pain. The filling in the root canal has to be removed and the infection that builds up after 15 or 20 years has to be bleached and then it can be refilled and voilà no more pain! The excruciating post surgical Pain was the worst I ever felt in my life. It’s the pressure that’s inside the closed wall while the infection heals. The pain is only controlled for me by opioids, and although my endodontist is the best of the best he did not believe in opioid prescriptions, so I was blessed that I had the prescription for my back And could use it for the teeth. I am 67 and I know after all these years that dental work means acute pain for me most of the time.
I experienced trigeminal neuralgia this spring, and I misattributed it it to the bone medication. I’m on Tymlos Because another gal @gently here had it and was on the bone medication. Turns out, coincidentally I broke my wisdom tooth up into the gum. When the tooth broke, the three months of intensive pain was done it circled the trigeminal nerve route, which had made it possible to isolate the location. I learned that, hairline cracks are not picked up by x-ray. I probably had some kind of crack in the wisdom tooth for a couple years. I go to the dentist routinely and it was not picked up even by the expensive dentists bizarrely the wisdom tooth below failed a month and a half later . Both were extracted both scared me to death and turned out to be nothing burger and only 10 minutes in the dentist chair and almost 100% pain relief within days. I want to suggest if you haven’t been to an endodontist that you go. Also ask about roots being left and unseen, and go to a specialist specialist to make sure there’s nothing infected or remaining inside the gum to heal. I know that soft tissue healing can take a couple months. I know that infections can be unseen in the gums. Looking back this was all causing me extreme sinus problems as well, which I could not explain understand or get rid of , it was because the cracks in the wisdom teeth were unseen, and bacteria was entering the gums and it was causing pressure which exerted itself on the trigeminal nerve route. It is no surprise that you’re a woman who ends up with this problem as women’s problem with their gums and roots and infections are under diagnosed and misdiagnosed. I think your body is telling you that something inside is exerting pressure on the nerve route so I would suggest going back to the dentist and making sure there’s no infections in your implants and they bleach the gums if needed. Let us know what happens! Good luck!

P.S. @johnbishop and @denisefraser - I was thinking, in summary, that Denise's problem stems from something with the teeth and surgery and not something a nerve doctor can attend to. Medicine just treats symptoms and will not resolve and may make worse the underlying condition if it is still in the gums, jaw, roots. Therefore Denise should tell us to what extent the dentist who did the work has treated her, and if she has gone to an endodontist and some additional background. There is a lot I presumed. Also want to say I had issues with a crown on the left side of my face, which crossed to the right side bite because the crown caused the bite on the opposing side to be thrown off. It's called a "sprain." it took months to resolve the sprain and a couple of visits for bite adjustments. It has to go slow. Would also want to know if her bite has been adjusted at all. Also, what kind of dentist did the implants? I avoid at all costs dentists who promise and advertise cheap implants. They have to be done over a very long time. Get teeth pulled and wait 6 months for the implants. Anyone promising "single-day" implants could be the source of your problem. (dental not neurological.)

I so appreciate the feedback today. The reason I was at the oral surgeon was originally because for some reason I had an 11mm opening in my gum exposing the jaw bone. This was on the inside below the wisdom tooth on the right side The surgeon explained that he needed to debride the bone slightly so that the gum would heal over this. I had infection at this site. He asked me if I had pain in my wisdom tooth. Realizing I am 62 years old and still had all my wisdom teeth. I said I could not tell He said , do you want me to pull the tooth? I said, I don't know. He did not explain to me what the possible repercussions could be. Ie. Nerve damage .

With my husband present, I said , I guess if there is a problem and you need to pull it, then you need to do what you need.

Had he told me there could be nerve damage, I would have said absolutely not.

I saw him again twice regarding the pain I was having after . Both times he said , there is no infection and it has healed.
I did go see my dentist and have him do an xray to see if there was anything left in the gum . There was nothing . I also saw a neurologist who did an MRI to see if there was a neuroma present. There was not. I also saw another dentist who did a cone beam CT. Nothing showed up.

At this point no one had answers. I also had complete bloodwork done at the hospital. No infections

I asked to be referred to an oral pain specialist in Edmonton. I also took it upon myself to see an oral pain specialist in Vancouver, BC. He diagnosed trigeminal neuropathy.
The oral pain specialist in Edmonton also diagnosed post traumatic trigeminal neuropathy. Neuropathy is different than neuralgia, as it is constant pain at the site
I hope this helps.

I will let you know when I hear from the neurosurgeon. My family doctor referred me to one at the hospital here Apparently he has written a 2 page letter to my doctor . He is unable to treat my case for some reason. I have an appointment on Monday with my doctor to discuss what's in the letter, and my next steps
Meanwhile I will be switching to trileptal over the next couple of weeks. Hopefully it is helpful

My endodontist is the guy who looked and found and treated all infections. he is not the same guy who does extractions. That is a different kind of dentist who does oral surgeries. I don't know if that is different for you. The bloodwork (I think) will NOT show up the infection in your jaw. The pain you are having may be related to an infection that does not enter your bloodstream but causes swelling (pressure) which triggers the TN event you are having. For a longtime I'd have pain when I chewed on the right side top. We kept on adjusting the bite. It kept working for a while but then the TN returned. Part of the problem as well may be looking in the wrong spot! I had that problem because it is referred pain and showed up in the wrong tooth! All 3 of my TN nerve routes were triggered at different times! So we looked incorrectly at my sinuses as well.
The opening in your jaw bone is a problem I had in the front bottom. I had infection from my root canals and it bubbled to a place it could abscess. then 20 years later it did it again. The bone had not grown properly below the root canals. So we watch it over the years. When I had the worst pain of my life after my darling Endo Dentist cleaned out the root canals - (I had 3 Percocets and 2 martinis and didn't feel pain relief!) He took me back in the next day and BLEACHED it down into the jaw from the root canals. It didn't hurt, he had already removed any infection -- it just relieved the unbearable pressure and could begin healing.
I will take a guess that your nerve pain is caused by something in your teeth/jaw, left unresolved. Could be coming from a different tooth /jaw area not yet uncovered.
To rest your mind - your dentist may have said you could possibly have nerve pain as a liability measure or because he didn't address the "root" cause 😉 I kept flossing and tapping and seeing what I could figure out.
20 years ago I was recommended to an EXCELLENT dentist. Turns out he did not deal with complicated women's teeth. He did not know I had extra roots which could not be detected! He went on vacation and the covering dentist (who was an EXCELLENT dentist) suspected that I may have had extra roots left behind. He was not capable of seeing them without equipment for that purpose so he was smart enough to send me to the Endodontist. That horrible experience was handled once the extra root was located and removed. Hang in there! If you have pain MORE opinions and dentists who work together. My sprain on the top LEFT which triggered the TN on my right took 3 months to resolve the sprain and bite adjustments. Improper bites when teeth move also trigger TN.

ps - I don't think your "nerve damage" is related to a pulling of your tooth. So you can rest comfortably that you didn't make the wrong decision or he forgot to include that, @denisefraser

Has anyone who has balance issues from their Neuropathy tried the Cadense shoes. If they were helpful with your walking, were you able to walk without canes or a walker? Thank you. brotherchuckles80

Hi Denise, I am on this site now because I developed neuropathy in my feet and lower legs, but 37 years ago after a dental procedure, I too, developed trigeminal neuropathy. It took a long time to diagnose and resulted in the needles extraction - after unsuccessful root canals and apical surgeries - of three teeth. Mine was the shooting pain. I was on nortriptyline and Gabapentin. It helped, but acupuncture made the biggest difference and eventually I was able to get off the Gabapentin (for that but am on it again for the PN) and eventually was switched to amitriptyline which I still take. If you haven’t tried acupuncture you may want to consider it. It took about four sessions before I noticed some improvement and then only needed four more. Now, unless there is a draft or AC directed my way, I don’t have problems with the TGN. I think the tincture of time helped too. Please don’t lose hope. When I was going through that dark time I never thought I would feel well again but I did and I’m confident that you will too. Feel free to write me whenever you like as I walked a similar road years ago.

Hi Cecilia19,
I am in tears as I read your message. Finally someone that has experienced the same thing . I too developed neuropathy in my feet from plantar fasciitis 4 years ago. I was on lyrica for it The immediate thought of my doctor and the specialist was to increase the lyrica. This is presently at 600mg and not working. The immediate plan is to lower one dose of the lyrica for a week , then add trileptal.
I have felt so alone with the trigemenal neuropathy. You can't explain it to anyone. It took so long to diagnose. You know the excruciating pain.
Thank you so much for
reaching out.
The specialist did mention amitriptaline. Would it be possible for us to connect over zoom or a phone call?
I have so many questions.
I am certainly in a dark place and trying to cope . I have an acupuncturist whom I am seeing tomorrow. I am wondering what sort of treatment you get done.
I greatly look forward to connecting further.
Thank you, thank you.