I had an appointment with a neurosurgeon yesterday. He was able to pull up my MRI on the computer and explain it to me. He showed me very clearly a blood vessel on the right side next to the trigeminal nerve. There was no such vessel on the left. So, it would seem this may be the cause of the V3 pain I have been experiencing. My neurologist is the one who ordered this MRI in Jan/2011 and all he told me was that it was normal. He did not show it to me or offer any further explanation. I wonder why this anomaly was not seen by the radiologist who read the MRI or my neurologist?? This neurosurgeon said that he does not typically recommend surgery until a patient fails 3 medications. But he also said with a clear indication of a vessel on the nerve he would not see the need to suffer for years with this pain if I decide to go the surgical route. I am to see him back in 3 months and he will discuss my case with his partners for their opinions in the meantime. I will be getting a second opinion from a highly esteemed neurosurgeon at Duke in a week. I will be interested to see if he has the same opinion. Thankfully, my pain is being greatly controlled after 3 weeks of being on Trileptal. However, I have conflicting feelings on whether taking this medication for years is any safer for my body than taking the risk of surgery. I just thought I would share my experience as it made me feel validated for pushing and seeing multiple doctors in a search for the cause of this condition.
Wisdom is leading you, keep up the good work! Please be sure to share after your second opinion. You might ask the doc ar Duke to weigh the mvd risk against a long term use of these meds we take. I havw been concerned for years, and when I discussed my concerns with my gp, he said that since my body has been doing well all these years, he has no reason to think meds would have adverse effects in the future. I hadn’t thought in those terms prior, so I think it’s good to bring them to the docs. So glad the med is working!
it is always a relief to feel validated especially after more than a year of not. PLease let us know what the second opinion is.
The way it was explained to me was that the MRI (even with the vessel on the nerve) is technically considered normal. That is why a neurosurgeon is more interested in seeing the disc of the MRI vs. the report. They look for more specific things that could trigger the pain while the hospitals look for things like tumors, signs of MS, etc.
As far as the medication, I have the same questions as you regarding the effect it has on your body. I can't handle the memory loss, forgetfulness, being off balance, fatigue, etc. That is why I have chosen to have the MVD surgery. I actually go in on March 28th. Just over 1 week to go. I feel that I have a great surgeon and will hopefully feel a lot better in a few weeks and get off these meds.
Good luck to you & continue to do the research yourself. You will find so much info in these sights.
good luck . please update