Has anyone been told that surgery will not help, as their myelin sheath is breaking down? Has anyone ever heard of this? I feel hopeless as it doesn't sound likely that these cells will regenerate.
Hi Nancy Jo,
I just now saw this post you wrote back in September. This topic is so complicated, but so interesting, and YES, I have heard about this from a neurologist at the House Ear Clinic in LA with whom I had a consultation a couple of years ago.
The way I understood things from the neurologist, long term GPN changes (?) the nerve…he said that my neuralgia is more of a neuropathy now, because the condition has gone on for so long. I neglected to have an MVD years ago and now the nerve is too damaged to treat successfully, and it has left me with lots of damaged nerve endings. In my own little head, I think the myelin sheath is GONE from that nerve from being compressed for so long …(my glosso nerve is compressed by the PICA - good visual on my MRI).
I have no idea if this will make sense to you or anyone else…like I said - a very complicated topic - but I get it, and it makes sense to me and I hope it helps you. I hope you’re having a pain free day!! Nikki
Hi Nikki, yes this makes sense. I was told the ony thing I could do was eat lots of fruits an vegetables and walk at least 2 miles a day. WOW !! They could find nothing wrong on my MRI, scans, etc., etc. This only made me feel hopeless. I finally went to the Cleveland Clinic where they discovered throat cancer. Surgery went well and all lymph nodes were clear. I have a little dysplasia on a vocal cord they want to monitor over the next year. Anyway, my pain left after the bioposy, much less surgery, and hasn't returned. My surgeon said there wasn't a connection. I can not make sense of any of this but will accept that my pain is gone and pray that it never returns. GPN is a complex problem. God Bless all who suffer with this horrible condition.
I’m just now putting two and two together, Nancy Jo, having read some of your other posts. Sorry - sometimes I’m a little slow. Whew! My biggest fear is that I also have something horrible lurking in my throat or ear or neck which will not be diagnosed properly. My pain mgt dr. has referred me to the psychologist in their office to help me deal with reality…I’m so sorry about your ordeal ( which I will now refresh myself with to follow the sequence of posts). I’m so sorry and I hope and pray your recovery is exceptionally perfect! God bless you too.
One of the things that spurred me to have the surgery at 6 years was the possibility that controlling the pain with seizure medications would mask the destruction that the pressure was causing. Nobody could really answer the question of long term irreversible damage from compression. The pain is gone, but there are aspects which have not fully recovered: weakness of the voice, some hoarseness, a feeling that there is something in my throat making me want to clear it. It is not constant, but sporadic. I had some of these issues before the surgery, and I really did not connect it to the GPN till now. Nobody really knows if this is going to go away. I would do it again if the pain returns. I have my life mostly back. I was willing to accept the risks of surgery because the quality of my life was being destroyed, I was being robbed of my happiness, and I could no longer be happy when I was with my family. I was losing weight rapidly. The surgery decision was, pardon the expression, a no brainer for me...
Vicdoc, this topic intrigues me. I've suffered with GPN for 12 years now. I haven't had MVD or any other procedure. As things have progressed for me, the pain is still there, off and on - so much better in the winter months - but the WORST thing at this point for me is the foreign body sensation in my throat and a TERRIBLE taste on my posterior tongue, palate and throat on the affected side. It's horrible.....like sucking on a lemon that's wedged in my throat. I think, in my own little mind, that it IS because the glosso nerve is now so damaged from being compressed for so long. I'm hoping it burns itself out eventually. That would be great. I also have weakness of the voice and hoarseness. So happy you have pain relief from your procedure.
Nikki D:
Nobody can really know for sure what damage is permanent or just pressure related which might improve with MVD. Maybe there is a PET scan or other test? For me, it was about living with a pain I could not live with even on medication, or try something which might help. I was losing 10 pounds a month at the end, so I knew there wasn't much time left for me to make up my mind. I knew the issues might be permanent and I might wake up with the pain or the pain might recur. But the neurosurgeon said there was a 96% chance of cure. I suspect that the real number is lower than that but I was desperate.
If you can live with it, and are willing to put up with the symptoms, then God bless you... I couldn't, and I took the jump and I would do it again, even with the difficult recovery and residual issues which are still here. I can eat a meal with my family with NO pain and laugh even though sometimes I can't taste much. It was all I could do not to cry before the surgery at every meal and sometimes I just cried.. I can live again.
Nikki, I understand your your concern. I too was losing weight rapidly and had lost all ability to swallow. Geez, wish I had gone to Cleveland Clinic sooner but who would have guessed the outcome. However, you don't know that there is permanent damage. So don't lose hope.Thank you for your kind words. I wish you the very best.
Nikki D said:
I'm just now putting two and two together, Nancy Jo, having read some of your other posts. Sorry - sometimes I'm a little slow. Whew! My biggest fear is that I also have something horrible lurking in my throat or ear or neck which will not be diagnosed properly. My pain mgt dr. has referred me to the psychologist in their office to help me deal with reality.....I'm so sorry about your ordeal ( which I will now refresh myself with to follow the sequence of posts). I'm so sorry and I hope and pray your recovery is exceptionally perfect! God bless you too.
Vicdoc, I agree with you regarding the damage vs. pressure related problem with the nerve. I would have made the same decision as you. Well, in fact, I did. It just turned out they found cancer. However, who knows if the pain will return once the nerves in my neck heal. If so I will go back for GPN surgery. I too had enough and was throwing in the towel or like you said taking the jump. You are spot on and your comments are informative as well as encouraging to our group. Thanks for your comments. God Bless. Nancy Jo
Vicdoc said:
Nikki D:
Nobody can really know for sure what damage is permanent or just pressure related which might improve with MVD. Maybe there is a PET scan or other test? For me, it was about living with a pain I could not live with even on medication, or try something which might help. I was losing 10 pounds a month at the end, so I knew there wasn't much time left for me to make up my mind. I knew the issues might be permanent and I might wake up with the pain or the pain might recur. But the neurosurgeon said there was a 96% chance of cure. I suspect that the real number is lower than that but I was desperate.
If you can live with it, and are willing to put up with the symptoms, then God bless you... I couldn't, and I took the jump and I would do it again, even with the difficult recovery and residual issues which are still here. I can eat a meal with my family with NO pain and laugh even though sometimes I can't taste much. It was all I could do not to cry before the surgery at every meal and sometimes I just cried.. I can live again.
Hi Nikki, I'm not sure any of the dorcs I've seen REALLY know much about this, they seem to act as if they do. One well know Neurosurgeon told me I had atypical GPN so there was nothing to be done, but then another well know Neurosurgeon went ahead and did 3 surguries on me, none of which helped. Maybe in the future they'll REALLLy be able to give us more hope. I'm wondering if anyone knows if this pain is heritary? If anyone knows plz respond. Hope everyone is hanging in there, and taking ne day at a time!
Hi Kim,
I have also found that FREQUENTLY I know more about GPN than the docs I’ve seen over the years. I guess it’s that rare. That’s an interesting question about a genitic predisposition to this type of neuralga. No one else in my family suffers from this. And I have also been told that I have atypical GPN. I’m also pretty sure I have vagal neuralgia and tympanic neuralgia and a couple of other neuralgias!!! My GPN has been sooooo much better this winter here in Arizona, as we’ve had an unusually cool season. I’m convinced I do much better when it’s chilly outside. Makes me dread this summer even more than usual. Hope you’re having a pain-free day!
Nikki, Myelin sheath loss is the definition of MS. And MS is worse in hot weather. I had a brain MRI at the end of last month. Finally got results a week ago. No MS, No Tumor in my brain, No compression of crainial nerves. But they found a Neural sheath tumor ( they are not sure if it is just myelin sheath tumor or if nerve cells are also involved ) It is in the nerve bundle that leaves the base of the skull in the retrophyarngeal space. So where the Glossopharyngeal, Vagus, and Accessory nerves come through the jugular foramen. Both my 2nd opinion neurosurgeon and my neurologist said my ENT would be the one with the best answers. He called yesterday and said because of the area any surgery to try to remove the tumor would leave me in "worse shape". I see this is an older discussion, so how did you do through the summer?
Ice pick, I’m so sorry to read about your diagnosis and that surgery might not be the answer. You’re in my prayers. How did I do through the summer? I was diagnosed with - of all things - whooping cough in July. I also had pleurisy and costochondritis along with it. I was very sick all summer. My pain management doctor told me that when an acute or emergent illness happens to a person with chronic pain, it sort of takes over and the chronic pain sort of takes a back seat. That’s exactly what happened to me. So I spent the summer in misery, but not because of GPN. Now that the cough is gone, the pain is back. I’ve had GPN for 12-13 years and it’s always worse in the summer months. It took many MRIs to determine that I have a looping artery that lies on top of the glosso nerve at the brain stem. I’ve also researched cranial neuralgias enough to know that the vagus and accessory nerves are also involved. I’m also not a candidate from MVD surgery because it’s so advanced. I hope you’re finding relief - you’ll remain in my prayers.
Hi Nancy Jo, have you been investigated for multiple sclerosis (MS). It causes a degeneration of the myelin sheath. The myelin sheath cannot really repair itself. It attempts to and this is what causes the scarring (sclerosis) in MS. You should see a neurologist who specialises in MS for an opinion.
Also if you want to protect your myelin sheath you need to ensure your diet is full of Omega 3. One way to ensure this is by taking supplements of both Flaxseed oil and also High Strength Fish Oil. You need to ensure the fishoil you take is a minimum amount of EPA 1gram content. Fish oil is broken into EPA and DHA. So you need the EPA content to be high.
I have MS and have had it a long time. So if you want to ask any questions about myelin sheath, other symptoms etc., or further information, please do not hesitate to ask.