Hi, My name is Rick and I had 2 bouts with GPN where it came and went twice in 2 years. Well it came back just last month.The last time I had GPN I went for accupuncture and I felt a positive reaction the very first visit. After 20 sessions my GPN was gone, but it only lasted 2 months.
I've had Xrays done in NYC but nothing shows any compression to the 9th nerve, and at that time the pain was not too bad so the neuro-surgeon referred me to pain management. Does anybody know what is happening here when there is no visible compression. Would appreciate any
insight.
Thanks, Rick
Hi Rick, sorry you have this. You can have GN with MS and no visible compression. Any MS symptoms? It is a weird condition, this GN, we all have stories. Hope you are doing ok.
Funtsie
It's so capricious - can come and go at random. As Funtsie said, there can be compressions without it showing on imaging. The usual approach tends to be pharmaceutical. (I have AFP, as well, which tends to be even harder to treat, so my neuro and I are trying various different things.)
Good luck finding help.
Hi, what is AFP?
Funtsie
Hi Funtsie,
No signs of MS that I know of, I play racquetball and do work out. Although the tegretol does hinder my game and your right this condition is one of a kind. Lets keep this going as I;m somewhat new to these posts.
Thanks for the reply, Rick
My neurosurgeon listens to the symptoms, said MRI usually does not show compression. My pain came in 2 month bouts, till the last one which went on 6 months. I wasn’t willing to wait for the pain management Docs to work their magic so I went with MVD and have had no GPN pain for 2.5 years. I’d ask for a second neurosurgeon opinion. But it’s your decision. Surgery isn’t 100% for everyone.
AFP = Atypical Facial Pain. Basically, lower level (ranges from zip to 8 or 9, including everything in between) pain levels than trigeminal neuralgia and such, and resistant to treatment.
Rick, my GPN started in 2010 and came and went for about 18 months until 2012 when the pain came and didn't go. Of course at the time I'd no idea what it was! 5 years on and I am 17 weeks post surgery and the ONLY reason I am post-surgery is having found a specialist who did the "right" MRI that actually showed up a compression. Until July of last year, I had had 18 MRIs which all came up as "clear". Seriously frustrating when I KNEW what I had was GPN. So what I'm saying is don't assume because your scans come up as clear that there is no compression of the 9th cranial nerve there. Only certain MRIs will show it up - you need a "fiesta series" MRI scan, no other will show it up.
Keep the questions coming Rick - when I first got this, this website was my lifeline and the people on here so helpful. Now I'm one of the ones "out the otherside" although still unsure as to the success of the MVD just yet. I'm on Tegretol (weaning down right now) but have been on it for 4 years, so any questions relating to that please let me know. Thoughts with you, the start of having GPN is the scariest - use us!
Hi rick
I wish I could tell you the best road to take, but I can't. I only know what was right for me.
I decided to go through the MVD, I couldn't deal with pain anymore.
I unforganetly had a lot of side effects (some permanent) but I am pain free and worth it.
If you go this route be sure to discus side effects with your surgeon, and be sure you can live with them
they can be permanent. Hang in there.
chris
I'm sure everyone is slightly different. What my neurologist told me is the glosso nerve has rubbed itself raw in a sense. What causes the pain is when the nerve rubs back and forth against other nerves in your neck it causes stabbing and shocking feelings. They prescribe me anti-seizure medicine to keep the nerve under control. When I ask about a permanent solution they say there really is none unless you want to have a very risky surgery in which they go into your neck and try and find the damaged nerve within a bunch of inter-twinded nerves and insert a pad on the raw area of the nerve to relief the iteration. They highly suggest avoiding this surgery and suggest taking medicine the rest of my life.
Hi chrisB
You are the first I've heard say the pain comes from nerve rubbing nerve, very interesting.
Everything I've read talks about a Vein rubbing the nerve as the main cause for pain.
anyway thanks for the info, good luck with your battle.
ChrisB said:
I'm sure everyone is slightly different. What my neurologist told me is the glosso nerve has rubbed itself raw in a sense. What causes the pain is when the nerve rubs back and forth against other nerves in your neck it causes stabbing and shocking feelings. They prescribe me anti-seizure medicine to keep the nerve under control. When I ask about a permanent solution they say there really is none unless you want to have a very risky surgery in which they go into your neck and try and find the damaged nerve within a bunch of inter-twinded nerves and insert a pad on the raw area of the nerve to relief the iteration. They highly suggest avoiding this surgery and suggest taking medicine the rest of my life.
Hi Vicdoc,
I along with you my MRI images did not show any signs of compression. I'm being told that if that's the case then they do exploratory surgery. Is this what you had done ? Do you know what they found and what they did ? Your positive results results through your MVD is very promising to me and everyone else on this site. Can you tell me what caveats your surgeon made you aware of before your surgery. I'm going for a consultation for possible MVD in a month from now.
This is my 3rd bout with GPN and I'm currently on 900mg's of Carbamezapine (Tegretol) I'm on a liquid diet, can't chew and the pills are making me dopey. Also constipation from the pills is my most current battle !!! Any insight into this horrible condition would be greatly appreciated.
Again, Great news on your successful MVD. Rick
Vicdoc said:
My neurosurgeon listens to the symptoms, said MRI usually does not show compression. My pain came in 2 month bouts, till the last one which went on 6 months. I wasn't willing to wait for the pain management Docs to work their magic so I went with MVD and have had no GPN pain for 2.5 years. I'd ask for a second neurosurgeon opinion. But it's your decision. Surgery isn't 100% for everyone.
Hi Rick, having had this for 18 years now I have learnt to deal with it in my own way and unfortunately I think this is what we all have to do. Mine also comes in bouts every 6, 12 even 36 months. I remain on medication namely Tegretol and when it comes back I up the dosage and also go onto Gabapentine and amphitryalyne even then I have to put up with some pain but it does eventually go. I will wake up one day and it has gone. The Tegretol gives me double and blurred vision most days so I had to stop working and driving.
Best of luck..
Phil
Hi Phil,
Thanks for your reply, You mentioned that you have dealt with this affliction for 18 years or so. I'm sure you considered MVD surgery. I'm curious why you haven't decided to do so. I'm somewhat new to this site and just saw on Kiwisurvivor's page some photos of the scars that the procedure leaves, my heart was racing for a whole day ! The only affected part in my case is my tongue, no throat,tonsil nor ear pain.Have you heard this with your 18 yrs with GPN. My appointment with the Neurosurgeon is in a few weeks and I know what he's going to say " If you can deal with the pain through medication then do so " This is my 3rd bout and I've had it about 6 weeks now and i'm on 800gm of Tegretol, My local Neurologist gives mt 100mg chewable which goes right into the blood stream which means that it works faster and he claims that it's less harmful than swallowing into the stomach. What's your opinion on that ? Wish me luck, Rick
chips987 said:
Hi Rick, having had this for 18 years now I have learnt to deal with it in my own way and unfortunately I think this is what we all have to do. Mine also comes in bouts every 6, 12 even 36 months. I remain on medication namely Tegretol and when it comes back I up the dosage and also go onto Gabapentine and amphitryalyne even then I have to put up with some pain but it does eventually go. I will wake up one day and it has gone. The Tegretol gives me double and blurred vision most days so I had to stop working and driving.
Best of luck..
Phil
Hey Tripper,
I have been dealing with GPN and TN for 5 or so years now but pain is daily. My treatment has been at Johns Hopkins, including one MVD with two nerves effected. It relieved the pain but now have further “damage”. Hopkins sent me to see Dr Jeffery Brown of Long Island, NY. He will be performing my 2nd (and most likely a 3rd on the other side :() in November. I HIGHLY recommend him!!
Good luck to you on your path to wholeness. We may feel like the Broken living in the land of misfit toys but when we band together it’s just not so!
TTFN…
I keep haunting this site to see if anyone has this from MS, and.................anyone had Juvederm while they have it? Juvederm is an injectable wrinkle filler that lights up the neuralgia as a side effect. I have had TN, GN for 20 years, and agree, if you can stand the pain and do not get it too often, the medication seems to work ok. Jury is out on the Juvederm ha ha!
:)
Funtsie