Hello - I have been following the posts on this website. I am 75 years old - it took me 13 doctors and 2 years to finally get diagnosed and treated for GPN. I had a calcified tonsil out because I was told that was the cause, i had an endoscopy, multiple cat scans and MRIs. I was on Lyrica, Gabapentin and Amitryptiline (at separate times) - all of which made me feel weird. I made comments about life not being worth living with this pain. When a pain specialist finally identified GP neuralgia I had it confirmed at the Mayo Clinic in Jacksonville. The neurosurgeon there told me flat out that to get rid of the pain I needed the MVD procedure - not a nerveblock as I had originally anticipated. He said that would not address the issue and the pain would eventually come back. I did an extensive internet search and also came across the MVD youtube video. It really scared me. Additional discussions with the neurosurgeon also made me aware in no uncertain terms that this procedure is not to be taken lightly. Yes, there was doubt if this is the right thing to do, but to have any quality of life my wife and i decided to go ahead with the surgery. I had it done May 10 at the Mayo. The surgeon said the GP and the vagus nerve were wrapped abound an artery. He severed the GP nerve and put a teflon pad between the vagus nerve and the artery. I was one night in the ICU and another 3 days in the hospital. I had really bad headaches the first few days but a week post surgery I was pain free. I have my life back. It is nothing short of a miracle.
For those of you who are contemplating surgery - for me it has worked. According to the neurosurgeon there is no reason to think it will come back. I'll be glad to provide additional information for anyone considering this surgery.
Glad you are doing better and the surgery worked for you. I am not sure though about why they severed the GP nerve? Did they actually cut through it? If so then how do you swallow, is that a problem? If the nerve has been cut then that is probably the reason you're not feeling any pain. I just didn't think they cut the 10th nerve. Sounds like the since the GPN was wrapped around the Vagus nerve, so since we NEED the vagus nerve more, the Dr. cut the 10th nerve since unwrapping it from the vagus nerve could have either or both nerves being severed? But glad everything turned out so well!
In my case the GP nerve was so wrapped around the artery that the surgeon actually cut it in 2 places - he said there should be no effect and I have not noticed anything. I have no problem swallowing. The vagus nerve has the teflon pad.
Terry
Kim Kaleher said:
Hi,
Glad you are doing better and the surgery worked for you. I am not sure though about why they severed the GP nerve? Did they actually cut through it? If so then how do you swallow, is that a problem? If the nerve has been cut then that is probably the reason you're not feeling any pain. I just didn't think they cut the 10th nerve. Sounds like the since the GPN was wrapped around the Vagus nerve, so since we NEED the vagus nerve more, the Dr. cut the 10th nerve since unwrapping it from the vagus nerve could have either or both nerves being severed? But glad everything turned out so well!
Taylor2010, how did you get referred to dr Wharen? I saw a neurologist at mayo today, he was
Very nice but did not seem to be in support of surgery for gpn.
thank you,
Ernestine
Hello Ernestine: I had made initially an appointment with Dr. Rubin at the Mayo. After he diagnosed GPN he gave various options for treatment including a nerve block. For that he referred me to the neurosurgery department where I was seen by Dr. Wharen. Dr. Wharen then talked about the treatments - medications that make you sick from the side effects, and nerve blocks which may or may not work and need to be repeated after a time. He said the only permanent solution for the pain is the MVD procedure. What is the neurologist you are seeing recommending?
I am glad I had the operation - it has changed my life.
I am so happy to read of your success story. I also suffered for many years without a diagnosis and now have been just treating with drugs for the last 15 years.
I thought I was alone with this gpn, so great that to find other people with gpn. I have read others who have had the MVD procedure but talk about it only being effective for a certain period of time, perhaps a couple of years or less but pain of a lesser severity perhaps. How long ago did you have your MVD procedure and have you had any signs of any returning pain? Well any insight you can offer would be appreciated.
One more question: I have tried several drugs, has anyone had a drug or combination of drugs that relieve the pain at least partially? After gabapentin and trileptal, I am recently taking tegretol with some topiramate. It was working to relieve pain somewhat but now it seems to be back in force. My pain episodes come on strong during the night and if I have a bad night it is hard to get the pain down during the day. Eating is a huge trigger.
I take topamax to help relieve the pain. It is the only medicine, and I have tried many and many combinations over the last ga-jillion years. It is a nasty drug but it does offer some relief. It doesn't take all of the pain away but it does take the sharpest, what I call 'electrical' stabbing pains that would totally debilitate me when they would come for a few minutes in a wave and then subside. The medicine hasn't helped at all with the constant soar throat and nagging ear ache that I deal with everyday, 24hr -7. I take a pretty heavy dose of 400 mg a day spread through a morning and evening dose so it does "dope me" quite a bit and I have to choose to not take it some days at full strength if I need to do something. I hope this helps, but I hope you are able to find something else that works for you besides topamax. Good luck.
Terry, thanks for your response. And so glad to hear you are doing well. Neurologist recommended continuing neurontin. I can't say neurontin has been a total failure, but basically I do the minimum at work, get home and barely have the patience or Energy to care for my family due to the pain. Mostly just get home and Lie down trying not to talk or laugh - which seems to aggravate it the most. I should have been more forthright about the debility of the pain. It has been three Months of symptoms, came relatively quick To a diagnosis thanks to the ent, and I think I'm Still holding out hope that this will miraculously disappear. Also although the neuro Agreed the symptoms fit, he mentioned just how rare it is, so I think he was Questioning it. However it gives me hope to know your story, and I'm only two hours from Jacksonville.
Did dr Wharen order the fiesta MRI to see he artery nerve anatomy? So far my regular MRI/mra, MRI neck, ct neck are all normal.
Thank you, and thank you for sharing your story and hope! Ernestine
taylor210 said:
Hello Ernestine: I had made initially an appointment with Dr. Rubin at the Mayo. After he diagnosed GPN he gave various options for treatment including a nerve block. For that he referred me to the neurosurgery department where I was seen by Dr. Wharen. Dr. Wharen then talked about the treatments - medications that make you sick from the side effects, and nerve blocks which may or may not work and need to be repeated after a time. He said the only permanent solution for the pain is the MVD procedure. What is the neurologist you are seeing recommending?
I am glad I had the operation - it has changed my life.
I was taking neurontin, then when that wasn't working, Trileptal, now Tegretol with a bit of Topamax at bedtime to keep the ear-stabbing pains away at night but they still come, just not quite as bad. Yes, eating and talking are my main triggers for pain during the day, its the worst in the morning. I am starting with an occupational therapist to learn how to live with this. Even though I was diagnosed with GPN over 7 years ago, just in the last year has the pain become debilitating.
Congrats on a successful MVD operation. I'm so glad you are painfree. I have lived with this since the mid 90's and I don't know how much longer I can stand it or the mind numbing drugs I am on to ease the pain. I was wondering if you lost sensation because of cutting the GP nerve? I know that loosing some sensation would be minor if I could get rid of all of this pain but I was wondering and I also don't know what areas that nerve controls or affects? I also have MS so they aren't sure if my gpn is caused by that. On one of my MRI's they aren't sure, but there might be a lession in that area or they say it might just be an 'artifact' or 'ghosting' on the film since it isn't on other MRI's that I have?? Not very conclusive. Presently waiting for Dr. McLaughlin to consult with Dr. Janetta on my case to see if I may be a candidate for MVD. Well, if you have some thoughts to my questions I would appreciate them, otherwise enjoy your time with your wife now that you are pain free. Oh, one more question, who was your surgeon at the Mayo and what did you think of him?
Holly: My surgeon was Dr. Wharen at the Jacksonville FL Mayo Clinic. Initially I went to see him to get a nerve block which my neurologist had recommended. But I thought he nailed it as far as the diagnosis and the treatment were concerned. He said the cutting of the GP nerve would have no effect on any sensations and so far it has not. In my case the GP nerve and the vagus nerve were entwined with the artery in that area. He cut the GP nerve and put a teflon pad between the artery and the vagus nerve. By now everything has healed and I have no after effects. By the way I have myasthenia gravis, so the surgery and the required anesthesia were of concern, but I am glad I did it because I had no life with the pain and the various medications.
Thank you for your response. I am very interested in having this performed, still waiting for my doctor to get back to me. Evidently Dr. Janetta is away so the consultation has been delayed so I am still patiently waiting. In the mean time I am trying to gather information so I hope you don't mind if I ask a few questions? I wanted to know how you would describe your post op experience? How long would you say the recovery is? Would you say the elimination of the pain is gradual after surgery or immediate? I am asking the last question because I had considered gamma knife before and the doctor told us that we would need to continue my meds for several months and that they would slowly be reduced to see if the gamma knife worked?? That seemed odd to me, probably why I didn't elect to do it and have saved that for a very last choice option which I still have not opted for. It is a good thing because I would definetely not be a candidate for MVD had I already had gamma knife, so that was at least one good thing. So.... if you get a chance and have some thoughts or answers for my questions, I would like to know what your post surgery experience was like.
I hope the following will be helpful to you in making your decision: at 75 years old I did not want to experiment with any procedure that did not provide me with permanent relief. I do not know anything about the gamma knife procedure - it was never brought up by my surgeon. He told me the only permanent treatment was the MVD. I my case the GP nerve was cut because there was entanglement of 2 nerves. My surgery took 3 hours. I was in ICU overnight and then in a regular room for another 3 nights. The surgery was on a Thursday and I went home on Monday. I stopped the Amitryptiline I was on (low dose). The surgical pain was controlled with morphine initially and then hydrocodone which I stopped too as soon as I got home. The pain from the GP nerve was gone immediately after surgery. I was not allowed to drive for 4 weeks. I had physical therapy for 2 weeks which really helped my coordination after surgery and the anesthesia (they had to use different drugs because of my myasthenia gravis). After my follow-up visit a month later I was pretty much back to normal - without the pain. Now, 3 months later I have absolutely no after effects. This was my individual experience. I am sure it is different for each person. Let me know how I can help. I think it is essentiaI you have a neurosurgeon (not a neurologist) who is experienced with this type of disease and the surgery involved.
Terry
Holly said:
Terry,
Thank you for your response. I am very interested in having this performed, still waiting for my doctor to get back to me. Evidently Dr. Janetta is away so the consultation has been delayed so I am still patiently waiting. In the mean time I am trying to gather information so I hope you don't mind if I ask a few questions? I wanted to know how you would describe your post op experience? How long would you say the recovery is? Would you say the elimination of the pain is gradual after surgery or immediate? I am asking the last question because I had considered gamma knife before and the doctor told us that we would need to continue my meds for several months and that they would slowly be reduced to see if the gamma knife worked?? That seemed odd to me, probably why I didn't elect to do it and have saved that for a very last choice option which I still have not opted for. It is a good thing because I would definetely not be a candidate for MVD had I already had gamma knife, so that was at least one good thing. So.... if you get a chance and have some thoughts or answers for my questions, I would like to know what your post surgery experience was like.