I'm new here & have questions - looking for help!

General General TN & GPN (Old Site)
1

Greetings all, great to find a site like this online. My trouble began over a year ago with pain only when I swallowed. This came & went sporadically for a year, pain level was maybe 6/10 at its peak. I had a barium fluoroscopy in May, they told me I had acid reflux. That was wrong. After being misdiagnosed by my family Dr. for a year, in mid September the pain suddenly became 9 or 10, and prevented me from talking, eating, & swallowing was hard to do. Misdiagnosed by several other docs at my local hospital emerge dept. over 2 weeks, I was finally diagnosed in early October by a Dr. in Ireland who read my symptoms in an email. I am in Canada.

I couldn't speak, eat or swallow w/o severe pain/shocks in the left side of my throat/tongue. I took a print out of the GPN info to emerge once again & the ENT residents had a neurology resident spray xylocaine into my throat. Voila! I could speak briefly w/o pain. I was dehydrated so they admitted me for 5 days until an MRI was conducted to confirm GPN. They did say that 2 blood vessels were not obviously looped onto the 9th nerve, but seemed close.

I am taking 1200 mg daily of carbamazapine, which took about a month to kick in to totally mitigate pain initially. Recently I noticed short, sudden spasms of my hands on occasion. Almost like the onset of Parkinson's. I've also recently noticed pain returning when I chew or talk loudly or at length. The pain is in the area of the left side of my jaw, can be 4-7/10.

I have my 1st scheduled appointment in late February with a neurosurgeon. I understand because we have free health care here, sometimes things move very slowly. I have some questions, hopefully someone can try to answer from their experiences:

- should I wait this long (5 months) to see a neurosurgeon?

- if others have taken similar meds to mitigate pain, has the pain over-ridden the meds eventually?

- are the small hand spasms expected with these meds?

- Docs here try to manage GPN by meds vs surgery, which is a last resort. I am over 50 & don't really want to take meds the rest of my life, nor deal with the pain I have when talking & eating.

- has anyone had surgery & been totally cured? If so, what surgical procedure was it, & where did you have it?

Thanks very much for reading.

2

Surgery worked for me and I’ve been pain free for 2 years so far. It might not last but I’d do it again. It doesn’t work for everyone.

3

I have herd very negative reviews of surgery. Low success rate and even coming out with new issues you didn’t have prior to surgery. I control my gpn with meds. 200 mg topamax 2xday it keeps the attacks from being sporadic and dulled the pain and heat sensation spreading them out. I don’t mind taking a pill 2 times a day vs risking my life for surgery

4

Hi there,

I was diagnosed with GPN almost a year ago by a neurologist who ordered an MRI of my brain/nerves. It showed blood vessels pressing on the 9th cranial nerve as well. He told me that I was most likely born with it, and he wasn't sure why it began when it did. I am 49 years old. My doctor prescribed Neurontin 300mg. up to 3 times a day and I have been pain free ever since, thankfully! I am actually able to only take 300mg. twice a day with no symptoms. Good luck!

5

I had GPN symptoms with increasing frequency for over 6 years, along with increasing dosages of meds, when the medication side effects became debilitating (extreme fatigue, difficulty concentrating, and slurred speech, but no spasms or tremors that I recall) and the pain became uncontrollable. I could no longer work, was losing weight because eating was so difficult, and couldn't laugh or talk without attacks of pain. I had no life anymore, so surgery was my only hope. I underwent MVD over 5 years ago at the University of Minnesota Medical Center by Stephen Haines, MD, and had immediate relief from my GPN pain. I have had no GPN pain since.To have the surgery was the scariest decision I've ever made, but it was also the best thing I've ever done. I got my life back, and I have had no deficits related to the surgery (other than a little numbness around the scar, which has improved over time). I know there are no guarantees, but there is hope for a good outcome. I wish you the best.

6

I also had a successful M V D on Cranial nerves 5,9&10 done by Dr. Haines 3 years ago with no side effects.
I had taken a combo of Tegretal and Trileptal in increasing doses until my sodium levels dropped too low. My pain was so severe that I was unable to swallow or talk.Surgery was my only option and I got my life back!!

7

Welcome to the support group Chetty. It is so valuable. Doctors do prefer to treat with meds in my experience, until they weaken in effect. I was on high doses of carbamazapine, as well and had similar side effects. I kept a log of my reactions and the list of meds is lengthy. Eventually, I underwent MVD, and am 100% pain free. It was done by Dr. Goodman @ St. Lukes Hospital in NYC. The journey was not easy, but I had a lot of help from family, church, and friends. I have no regrets. Best of health wished for you.

8

Hi Chetty,

I did not have success with medications because of other complicating medical conditions. I, too, am over 50 and I had MVD of cranial nerves 9 and 10 about 6 months ago and am about 90% pain free. I do have a few residual issues from the surgery which I am still addressing (paralysis of vocal cord and pulsatile tinnitus) but these should be resolved with time and I would have the surgery again if given the choice. I had surgery at Duke Medical Center by Dr. Fukushima and Zomorodi. I hope everything works out for you up in Canada.

Rudianne

9

Thank you KayJay!

KayJay said:

I had GPN symptoms with increasing frequency for over 6 years, along with increasing dosages of meds, when the medication side effects became debilitating (extreme fatigue, difficulty concentrating, and slurred speech, but no spasms or tremors that I recall) and the pain became uncontrollable. I could no longer work, was losing weight because eating was so difficult, and couldn't laugh or talk without attacks of pain. I had no life anymore, so surgery was my only hope. I underwent MVD over 5 years ago at the University of Minnesota Medical Center by Stephen Haines, MD, and had immediate relief from my GPN pain. I have had no GPN pain since.To have the surgery was the scariest decision I've ever made, but it was also the best thing I've ever done. I got my life back, and I have had no deficits related to the surgery (other than a little numbness around the scar, which has improved over time). I know there are no guarantees, but there is hope for a good outcome. I wish you the best.

10

Thank you very much Donna!

Donna said:

Welcome to the support group Chetty. It is so valuable. Doctors do prefer to treat with meds in my experience, until they weaken in effect. I was on high doses of carbamazapine, as well and had similar side effects. I kept a log of my reactions and the list of meds is lengthy. Eventually, I underwent MVD, and am 100% pain free. It was done by Dr. Goodman @ St. Lukes Hospital in NYC. The journey was not easy, but I had a lot of help from family, church, and friends. I have no regrets. Best of health wished for you.

11

Thank you Rudianne! It is great to hear of these current success stories :)

Rudianne Thomas said:

Hi Chetty,

I did not have success with medications because of other complicating medical conditions. I, too, am over 50 and I had MVD of cranial nerves 9 and 10 about 6 months ago and am about 90% pain free. I do have a few residual issues from the surgery which I am still addressing (paralysis of vocal cord and pulsatile tinnitus) but these should be resolved with time and I would have the surgery again if given the choice. I had surgery at Duke Medical Center by Dr. Fukushima and Zomorodi. I hope everything works out for you up in Canada.

Rudianne

12

Thank you all for the replies. As a personal update, the pain in my jaw is now at 10/10 so I cannot chew food at all. I just bought baby food to try & have been existing on protein drinks mostly. I had an appointment with a neuroligist this past Monday and advised her that the 1200 mgs of Carbamazepine I am taking per day are now basically ineffective. Severe jaw pain & throat pain when swallowing or talking above a whisper have returned. I had about 3-4 weeks of pain mitigation. So she started me on Baclenol (?) gradually, which is a muscle relaxant. So far there is no improvement. I am still not scheduled to see a neurosurgeon until late February.

I must say that reading the similar stories of others here is therapeutic in knowing that there are others who understand what we are experiencing. Please keep the contributions coming.