Irritated GPN

General General TN & GPN (Old Site)
1

Hello, My name is Rick and I have an irritated GPN of which I'm currently being treated for.

My Neurosurgeon is Dr. Philip Stieg of NY Presbyterian hospital. When I originally saw him 2 months ago I was taking only 1 100mg of Carbamazepine(chewable) daily. He said you seem to have your problem under control with just 1 pill daily. He referred me to Pain Management. Here they injected me with cortisone in the back of the tongue with no relief at all. Then we tried nerve block by way of interventional radiology which is an injection to the neck guided by ct scan.This was done just last week

The nerve block procedure gave me no relief at all. BTW: The pain has worsened and I'm now taking 500 to 600 mg daily. My options are running out as I'm trying to avoid surgery. The pain mgmt Dr. was on vacation and returns tomorrow. I'm being told that accupuncture might be a viable way to go. If that does not work exploratory surgery might be the only option left. I've had mri's taken where there is no visual signs of compression of which I'm being told that might not be the case because you can only see so much from a picture. I had this last year for 3 months or so and it just went away on it's own. The Neuro Surgeon said the same thing. I know it's wishfull thinking but I'm hoping that it just goes away on it's own.

Rick

2

Hi Rick, I've had a few nerve blocks for spinal injuries each year. They tend to go one of two ways: blissful relief, or make it a lot worse for a while, but settles down. So hang in there, it sometimes takes a few weeks for it to kick in if you get an initial exacerbation of pain and symptoms.

3

Good morning Rick,

I have been living with GPN for over 8 years now. My pain attacks still flair up from time to time. When they do, my Neuroligist will put me on high dosage of meds daily (3600 MG of Gralise and 600 MG of Trileptal). The attacks will usually subside after a few days and the Dr. will then start gradually reducing the dosage after a few weeks. I currently am taking 1200 MG of Gralise and 150 MG of Trileptal daily while the pain attacks are in remission. I hope your Dr. can find a combo of meds that will get your pain under control. Those of us who suffer from GPN understand what you are going trough. Hang in there!

Zman

4



Smiley said:

Hi Rick, I've had a few nerve blocks for spinal injuries each year. They tend to go one of two ways: blissful relief, or make it a lot worse for a while, but settles down. So hang in there, it sometimes takes a few weeks for it to kick in if you get an initial exacerbation of pain and symptoms.

I'm finding it extremely difficult to navigate on this web site !!! got any hints ? When I reply there is no enter here or reply here icon.....very frustrating

5

2nd attempt to reply !!

Hi Zman, I had GPN last year and it went away on it's own. This year seems was more intense where I had to take meds. I'm currently taking 200mg of Carbamazepine twice daily. My symptoms are pain while eating & speaking. Although on meds I'm fine with just a few twinges in the morning. I think and hope that I'm on the way out with this years episode. How long do your episodes last ? and are they more intense when they come back ? Have you considered any of the procedures, nerve block with steroids or mvd surgery or even accupuncture ? I hope you get this reply..

Talk soon, Rick

Zane said:

Good morning Rick,

I have been living with GPN for over 8 years now. My pain attacks still flair up from time to time. When they do, my Neuroligist will put me on high dosage of meds daily (3600 MG of Gralise and 600 MG of Trileptal). The attacks will usually subside after a few days and the Dr. will then start gradually reducing the dosage after a few weeks. I currently am taking 1200 MG of Gralise and 150 MG of Trileptal daily while the pain attacks are in remission. I hope your Dr. can find a combo of meds that will get your pain under control. Those of us who suffer from GPN understand what you are going trough. Hang in there!

Zman

6

I had left GPN off and on for 6 years. The CT and MRI were read as negative by the radiologists back then.

The pain was horrible, but usually the attacks went away after 2 months. This latest episode in 2012, it didn't go away, I went to Duke University pain clinic, they Rx'd me with carbamazepine, I got weird side effects.

The pain went away briefly but came roaring back, and after a total of 6 months, I lost 20 pounds rapidly, so I got my LMD to approve an appointment with my neurosurgeon, Dr. Fukushima in Raleigh, who said he saw the offending blood vessel in my 5 year old MRI. So much for negative studies. You need a specialist to read them, and even then the blood vessels may not show up.

His office told me they operate on symptoms, not studies, but the MRI was a plus in my case. They said the vessels don't usually show up.

I had MVD just about 2 years ago. I woke up pain free, had temporary surgical side effects and overall weakness for months, but now am fully recovered, no GPN pain at all! Once in a blue moon I feel a small ping in the left eardrum.

If I had it to do over again, I would have had the surgery at the beginning. YMMV. Good luck in your future.

7

Hi VicDoc,

Your reply was very encouraging. Like I said I hope I'm on the down swing fron this 2nd episode that lasted 3 months.

If I'm correct i'll wait it out until the next episode which might be next year , it always happens July to Oct ?? Your the only other person that mentioned carbamazepine where all 3 of the neurologists I saw RX/d it. Have you any stories where people have had an episode or 2 and then became episode free.? What were your symptoms ? Mine were pain while speaking and eating on the right side. As I said in my 1st discussion my pain was less the 1st episode than this 2nd episode. I want to avoid surgery but if it roars back a 3rd time I'll consider mvd like you had done. Glad to hear you had success from your mvd. This site references alot of people that did not have too mich success.

Hope to hear from you, Rick

Vicdoc said:

I had left GPN off and on for 6 years. The CT and MRI were read as negative by the radiologists back then.

The pain was horrible, but usually the attacks went away after 2 months. This latest episode in 2012, it didn't go away, I went to Duke University pain clinic, they Rx'd me with carbamazepine, I got weird side effects.

The pain went away briefly but came roaring back, and after a total of 6 months, I lost 20 pounds rapidly, so I got my LMD to approve an appointment with my neurosurgeon, Dr. Fukushima in Raleigh, who said he saw the offending blood vessel in my 5 year old MRI. So much for negative studies. You need a specialist to read them, and even then the blood vessels may not show up.

His office told me they operate on symptoms, not studies, but the MRI was a plus in my case. They said the vessels don't usually show up.

I had MVD just about 2 years ago. I woke up pain free, had temporary surgical side effects and overall weakness for months, but now am fully recovered, no GPN pain at all! Once in a blue moon I feel a small ping in the left eardrum.

If I had it to do over again, I would have had the surgery at the beginning. YMMV. Good luck in your future.

8

Rick,

My pain was a sharp, severe stabbing pain in the left tonsil area, when I ate, swallowed, yawned, coughed, laughed, sneezed, brushed my teeth, washed my hair, etc. If it happened in 2 or 3 times in short succession, a triggered pain lasting 5 to 10 minutes which felt like a knife in there being twisted would happen, radiating up the ear canal to the eardrum and left cheek.

Once the nerve was exhausted, there was a brief 3 to 5 minute period when I could eat anything with no pain. Then the stabbing could come back.

Many folks here have the periodic attacks, which come and go. Mine usually lasted about 2 months, but this last time it showed no sign of going away after 6 months. I was at my rope's end, and I'm ashamed to admit it, I considered ending it all by various means at about 4 or 5 months. It was that bad. Even now, I have this feeling of terror on occasion, like a flashback. Surgery gave me hope that the pain clinic didn't. They said "we have some tricks left up our sleeve: many of our patients with Trigeminal Neuralgia have 90% reduction in their attacks by a year". I could not see lasting a year. I was his only GPN patient.

Surgery was rough, as was the recovery. But it worked, and gave me my life back. I regained about 10 pounds of my lost weight. I don't eat as much as I used to, food just doesn't have the same allure it had.

I am not sure you can look at a site like this for true numbers as far as success is concerned. There are papers out there showing very high success rates. The truth is probably somewhere in between, depending on the experience of your surgeon. For sure if you decide to have surgery, ask him/her how many GPN MVDs he/she has done, and how many successes he has.

My surgeon told me he has a 95% success rate. However, a girl who had her MVD 2 days before me at the same hospital had no relief and all sorts of problems.

I wish you pain free days!

Vic

9

Hello Rick

Sorry to hear about your condition.

The only medicine that keeps my glosso and facial pain in check is 100 to 150 mg of Tramadol and 0.5mg clonazepam daily in the morning. (300mg Tramadol is the maximum allowable daily dosage)

All other painmedication and antidepressants failed or even made my pain worse.

I had a Glossopharyngeal MVD in early August 2014 and since then my pain has doubled. The MRI pictures nevere showed any problems until I made some kind of HIGH RESOLUTION MRI. There the doctors could see a compression of the Vagus group of nerves.
During the surgery my doctors found a huge mess inside my head with the glossopharyngeal and vagus nerve severely compressed by an atery and my nerves were overgrown by some (strange) tissue. I don’t remember what kind of tissue is was.

Anyways Inhad the surgery and things got worse.

I will go and have a Rhizotomy of the 9th and 10th cranial nerve performed. Last chance to get rid of the pain.

I tried all kinds of medications, acupuncture, meditation, psychologist … you name it.
The only thing helping pretty well is Tramadol.

What I am trying to tell you is that there is no treatment that guarantees pain relieve and like in your current situation and in my case, some treatments even make things worse.
You have to assess your own current live and describe how much risk you are willing to take, to get your health and life back.
I came to the conclusion that I will go to the ultimate surgery to possibly get my life and pain under control again. Also no guarantees there.

Do your own research and don’t trust the doctor too much and always get 2 or 3 professional opinions. Asking 3 doctors usually gives you 3 different opinions from black to white and A to Z.
This web forum and the experience of the people here are a huge help to find answers what might be wron or right for you in your particular case.

Thumbs up

Mike

10

Hi Vic,

Wow !! Now you really scared me with the depth of your condition prior to the MVD. With your middle ear, ear drum, tonsil, throat, and everywhere else. I just have at times speaking & eating...thats it. I'm taking 1 pill at 7am and another at 7pm and all I get is maybe 3 or 4 twinges a day,so it's under control and hopefully on it's way out which ends another episode (2nd) that lasted 3 months of which 1 month was pretty bad but nothing like what you went through.

My current Neurosurgeon is a top Dr. at New York Presbyterian who told me that some times these things just go away on their own. He failed to mention that they can come back on their own. I have another appointment with a Dr.who runs the Nuerology dept. at NYU on Nov 5th. I'm being told that he spends 2 hours on the 1st consultation ? we'll see

He's in his 60's so I'm hoping that he has experience with GPN...The Dr.'s at N Y Presbytrrian are much younger and don't have too much if any to experience with GPN. I had a nerve block procedure where they injected a steroid in my neck with no improvment. I was his 1st victim...They came mm's between my corroroded and the vagas nerve.The injection was guided by ct scan and I was literally cemented to the slab I was on...DON"T MOVE was what they kept saying...never again with that. I'll keep you posted on my condition and my appointment 11/5/14

Talk soon, Rick


Vicdoc said:

Rick,

My pain was a sharp, severe stabbing pain in the left tonsil area, when I ate, swallowed, yawned, coughed, laughed, sneezed, brushed my teeth, washed my hair, etc. If it happened in 2 or 3 times in short succession, a triggered pain lasting 5 to 10 minutes which felt like a knife in there being twisted would happen, radiating up the ear canal to the eardrum and left cheek.

Once the nerve was exhausted, there was a brief 3 to 5 minute period when I could eat anything with no pain. Then the stabbing could come back.

Many folks here have the periodic attacks, which come and go. Mine usually lasted about 2 months, but this last time it showed no sign of going away after 6 months. I was at my rope's end, and I'm ashamed to admit it, I considered ending it all by various means at about 4 or 5 months. It was that bad. Even now, I have this feeling of terror on occasion, like a flashback. Surgery gave me hope that the pain clinic didn't. They said "we have some tricks left up our sleeve: many of our patients with Trigeminal Neuralgia have 90% reduction in their attacks by a year". I could not see lasting a year. I was his only GPN patient.

Surgery was rough, as was the recovery. But it worked, and gave me my life back. I regained about 10 pounds of my lost weight. I don't eat as much as I used to, food just doesn't have the same allure it had.

I am not sure you can look at a site like this for true numbers as far as success is concerned. There are papers out there showing very high success rates. The truth is probably somewhere in between, depending on the experience of your surgeon. For sure if you decide to have surgery, ask him/her how many GPN MVDs he/she has done, and how many successes he has.

My surgeon told me he has a 95% success rate. However, a girl who had her MVD 2 days before me at the same hospital had no relief and all sorts of problems.

I wish you pain free days!

Vic

11

Hi Mike,

Your reply was informative and also alarming as to the severity this GPN can havoc. Like I was telling member VicDoc my symptoms are nowhere a severe as the both of you. What I did get from you was: (your quote below)

What I am trying to tell you is that there is no treatment that guarantees pain relieve and like in your current situation and in my case, some treatments even make things worse

These NY Doctors told me theres a 1 in 125,000 chance of having this GPN, that's 8 in a million chance.

Aren't we lucky !! I have another appointment 11/5/14 I'll keep you posted as to what they say.

Talk soon, Rick

.

Mike said:

Hello Rick

Sorry to hear about your condition.

The only medicine that keeps my glosso and facial pain in check is 100 to 150 mg of Tramadol and 0.5mg clonazepam daily in the morning. (300mg Tramadol is the maximum allowable daily dosage)

All other painmedication and antidepressants failed or even made my pain worse.

I had a Glossopharyngeal MVD in early August 2014 and since then my pain has doubled. The MRI pictures nevere showed any problems until I made some kind of HIGH RESOLUTION MRI. There the doctors could see a compression of the Vagus group of nerves.
During the surgery my doctors found a huge mess inside my head with the glossopharyngeal and vagus nerve severely compressed by an atery and my nerves were overgrown by some (strange) tissue. I don't remember what kind of tissue is was.

Anyways Inhad the surgery and things got worse.

I will go and have a Rhizotomy of the 9th and 10th cranial nerve performed. Last chance to get rid of the pain.

I tried all kinds of medications, acupuncture, meditation, psychologist .... you name it.
The only thing helping pretty well is Tramadol.

What I am trying to tell you is that there is no treatment that guarantees pain relieve and like in your current situation and in my case, some treatments even make things worse.
You have to assess your own current live and describe how much risk you are willing to take, to get your health and life back.
I came to the conclusion that I will go to the ultimate surgery to possibly get my life and pain under control again. Also no guarantees there.

Do your own research and don't trust the doctor too much and always get 2 or 3 professional opinions. Asking 3 doctors usually gives you 3 different opinions from black to white and A to Z.
This web forum and the experience of the people here are a huge help to find answers what might be wron or right for you in your particular case.

Thumbs up

Mike
12

Hi Rick,
I’ve had two Mvd surgeries, acupressure numerous meds but the only thing that helps me if Tegretol every 3-4 hrs, 200 mg each tablet. Please try this until the nerve calms down.
After my 2nd Mvd and the monster came back again 2 months ago I realized Tegretol works. Set your phone alarm and take it every 3-4 hrs!! Needs to be 200 mg xr
Trust me, 500 mg will not work.
I had met someone online and that was his advice and it worked.
Hang in there!!!
Lee

13

Btw mikes advice is great.

14

Rick, have you tried Baclofen. it seemed to work for my son who is only 10 years old.

15

Hello Lee



How does the tegredol work? I was offered it when I visited some Doctors On my trip to the US, but was afraid of taking it.



Thanks



Mike

16

I get some limited, short-term relief from acupuncture. Although it doesn't last, it does give me a break from the heavy pain meds and their side-effects. I have Blue Cross Federal, and they will pay some (about 1/2) of the fee for the first 26 visits. I exhausted those early in the year and now pay on my own. It's pretty expensive for just a few hours of relief, so I try to save it for when it's really bad.

That said, I am headed for a MVD in November and will post updates as soon as I am able. Having thoroughly researched this and had three medical opinions, I am fully "all in, "spiritually, mentally and physically (trying to exercise...keep lungs healthy and clear). I'm updating various items such as my will and advanced directives because that's what responsible people do, not because I am particularly concerned. I kept a log and spreadsheet of my pain levels (and some jottings of the meds) so that I was as fact-based as possible on my decision making. (You tend to be very emotional on high pain days and the meds can make you foggy, so I wanted a clear-headed decision-making process.) I found I was in untenable pain (level 8 with meds) on 40 percent of the days and barely in-check pain another 40 (level 4-7), and only 30 percent of my days were pain free. For me, the level of the pain the last two years has been the tipping point. I have a fairly high pain tolerance and a decent pharmaceutical regimen (tramadol day time and aleve or hydrocodone at nights) so I had been able to deal with this for years. But the constant level 8s have robbed me of the quality of life I want, so the trade-off for risk is worth it. My doctor says he'd rather operate on a relatively healthy 58-year-old than have me try to tough it out for years on end and ask for surgery at a later date. For me, it's time to do it!

Thanks to all of you on this support group for the realistic, factual information as well as the compassion and understanding. A special thanks for those who continually stay in touch past their surgeries.

17

Hello Rick

Yes please keep me updated.

ciao

Mike

18

Rick I have had a lot of help with topamax. I have severe GPN as well. It greatly reduced my symptoms. The heat that felt like a blow torch out my right ear is now spread across my head and down my neck at a much more tolerable level and is constant so I don’t even notice it. The pain is also spread out diminished and consistent so I don’t feel the shock of someone stabbing me with an ice pick at random times so it is a lot more tolerable to. Of course I am still looking for something more so I am not in any pain but this medicine has been successful for others in smaller doses I am just maxed out. Good luck on your search

19

Hi Vic

You are absolutely right with your assessment of the success rates. Many papers out there and yust figure out a number right in the middle.

My MVD did not help so far (2 months ago) and my doc told me that it might take several months to get pain relief.

Most papers on the net say that most patients wake up pain free.

What to believe?

ciao

Mike

20

I woke up pain free. But recovery was a mountain to climb.

Remember the nerve has been compressed for a long time and the damage can take a long time to heal. Nerves are fragile. Hope yours recovers.