Hi there,

I have had GN for 17 years.I have been on 1200mg of Carbatrol for nine years and have developed more side effects and pain in spite of it. Now I am faced with the surgery. My question is about the results of the surgery. At Mayo Clinic, they plan to decompress and sever the nerve. I am concerned about what I will lose besides the pain. Has anyone had this surgery with the nerve being severed? As far as I have learned in reading, the nerve goes to the tympanum, controls the bitter taste buds at the back of the tongue, and goes to the pharynx that aids in swallowing. The taste buds will die, and I don't know what else will happen. Will I no longer be able to swallow? I have the surgery scheduled for next month, but need more answers.
Thank you,
Tammy

Well, it looks as though this forum has been dead for a few months. I hope that means that everyone is in remission.

I am a 43 year old male who was diagnosed with GN 5 years ago. When I first felt it, I thought I simply had a sore throat. Although I could tell there was something different about it. It went away for a few weeks and then came back and was very painful. I feel fortunate that it was diagnosed quickly. I tried several meds but none were really helpful. After a couple of months it went away. I thought it was over. But about 7 or 8 months later it came back. This time, although painful, I was able to control it with both Neurontin and Trileptal. I don't remember the exact dosages, but for the most part the combination of both seemed to work. Again, it went away after a few months only to return the following spring. As before, the meds did a decent job of keeping it at bay. It was just a pain in the rear having to take all of this medication, but it was certainly better than the alternative. My neurologist had mentioned a surgery in which they cut the nerve and was actually pushing me to do this. I wanted no part that and switched neurologist. Again...remission. Last year when it came back it seemed as if it was either worse, or the medication was losing its effectiveness. My neurologist suggested a steroid pack. His basis for this was that his mother had TN when he was young, and she would always do this when it started and it seemed to help a lot. It didn't help me. One Sunday afternoon I was on the couch with my kids, reading them a story, when I had one of the most painful attacks of pain I had ever had. Now I am a 43 year old man. I've never considered myself to be an overly tough guy, but I'm not a wuss either. This attack put me in the floor screaming in pain. I don't care to tell you that there was water in my eyes. These kind of attacks continued for a few days and I decided that it was time to talk to a surgeon. Enough is enough. Being in a small town just outside of Knoxville, Tennessee, I figured that there probably wasn't many surgeons in this area that was familiar enough with GN. I asked my neurologist to refer me to one outside of the area and he did. Problem is, that by the time I met with him...you guessed it: remission. He spent a lot of time with me going over the surgery and suggested that we not do it at that time because he had seen cases where GN had went into remission and never returned. I agreed with him and decided to wait and hope that it was gone for good. Yeah, right.

Fast forward to this past spring. My GN returned. I don't know how it comes back for the rest of you, but in my case it always starts mild and gets worse in time. My problem was that to control my GN, I was taking a lot of medication. So much so that it was impossible to do my job and take my meds both, because I drove a company vehicle. So, like a dummy, I backed off of my medicine. On the last day of June, I was having a bad day with pain. It wasn't unbearable to this point, but I could tell it was getting worse. Toward the end of the day, I coughed and it was like a firecracker went off in my left ear. I hit the ground wrenching in pain. About 15 minutes later..another one. At this point I called my supervisor and told him I had to go home. He was aware of my situation and understood. I have not been back to work since. Once I got home and was able to start taking my full dosage of medicine every day, I was okay for a few days. On July 3rd I went to bed and stayed there until about 4 days ago. Over a month in bed due both the pain from GN and the side effects of my medication. I would take medication 4 times daily. Each dose consisting of 500 mg of Trileptal and 1200 mg of Neurontin. That's 2000 mg of Trileptal and 4800 mg of Neurontin daily. At the beginning of this stay in bed I also mixed in some Tegretol which led to a trip to the Emergency room. I already had made an appointment to once again talk to the same neurosurgeon from a year earlier. During my month of doing nothing but lying in bed, I would have liked to go and see my neurologist. But they would not see me until September (this was July), even after I told them of my trip to the emergency room. I think I am going to find a new neurologist.

SATURDAY AUGUST 7TH: As I sit and type this at 4:30 in the morning, my GN is heading fast toward remission. I now take medicine only 3 times daily (5oo mg of Trileptal and 900 mg of Neurontin). I could probably even back off of that a little more. I still feel a little something every so often, so I know it's not completely gone. But it doesn't matter. I'm not putting it off for another year. I have been a slave to this monster for five years and I refuse to do it for another. In two days I go to Vanderbilt to undergo MVD surgery. This surgery does not consist of cutting the nerve, but I told the surgeon if that is what it takes, then so be it. I'm tired of the pain, and I want my life back. I am glad that I have found other people that know what this is like. I think the worst part of this, is that no one else knows the kind of pain that we have to endure. I will check back in a few days, hopefully after a successful surgery. I wish all of you the best, and will pray for each of you.

Hi all,,, I am Tess. Newly diagnosed with GPN but have sufferered for at least 3 years with it. I am a Righty with the pain focused under my upper tongue and my back teeth and gums and right side of the throat. I kept running to the dentist thinking my teeth had cracks in them. Spent more money than I care to recall getting unneeded dental work done. Finally went to a root canal specialist who tentatively diagnosed it and recommended an MRI and a trip to the Neurologist. Geez,,, guess what happened? I went into remission for a year. I nearly forgot about it. Met the love of my life, had a beautiful Grandaughter. Many blessings! Now I have been in hell for 2 months. My PCP was beside himself and clueless. It took a month to get in to see a Neurologist and she said "You have a very rare disorder and there isn't a whole lot to be done other than medications." <Yes, I waited a month for that.> I will have an MRI on Monday. Very low dose Tegretol because it makes me very tired and dumb and I am trying to keep my job. What a life! I have had a few good days in a row and am praying for remission.

Tess, check into Surgery. I fought this thing with medication for 5 years. I just had my surgery and will write about it a little later. But do not be a slave to this disorder, take your life back.

Why are they severing the nerve?

The nerve does not, should not, be severed. They need to place a teflon sponge in between the artert and the nerve. Boom. You are fixed. No severing.

My thoughts exactly.

Diagnosed few days ago... pain has been on and off for several years.. followed typical pattern. treatment for sore throats,,T&A age 40, metal taste in mouth,,dental work,acid reflux, the last year has been 50% full of pain... just started triliptal and tapering up to 2400mg over next month with nuerologist orders... day three and nausea begins... Any how any informations will be helpful!... tips for pain releif,,,, work,,,dealing with focusing,, i seem to have short term memory issues,,

Unfortunately, the only tips I can give for pain relief is the medication. I was taking a ton of it before I finally decided to have the surgery. It got to the point that the pain from the GN, and the side effects from the medication were both equally bad. I like not having the pain now. But I am also thrilled to not be taking a ton of medicine. I never had the taste problem that others seem to have. If the pain is that bad, I would strongly consider surgery.

I find it quite difficult to navigate this forum. Please **message me** and I will tell you of my happy news !!

Tess