I am so fed up with the side-effects of Tegretol - along with about 10 other medications I have to take and after almost 3 years with the pain - I have opted to go for the surgery as my doctor assures me that 95% of people who have it are pain-free after. The risks are scary - but the quality of life with this and trying various medications scares me more.
Anyone out there had the MVD surgery?
Linlouise, go to the groups tab above in the black header bar and find the MVD group and join, lots of great information, personal stories etc!
Louise,
Yes, I had the surgery in July of 2013 at Cedar Sinai Hospital in LA. It was a complete and 100% success to date. I did have mri/mra evidence of entrapment of the TN by the superior cerebellar artery on the side of my symptoms so the neurosurgeon Dr Michael Alexander felt very confident that I would have either full resolve or at least moderate reduction in my pain level. The surgery was about 3 hours from start to finish and I felt no pain coming out of the surgery and being wheeled to icu. I felt very thirsty, and a little nauseated and slightly dizzy which persisted for several days, improving each day after. At about day 4 or 5 I felt normally stable again. I really had no incisional or head pain and only took Tylenol from day one for any pain I had. The most uncomfortable thing I noticed was the 3 iv lines they had in and the catheter. It was just difficult to move and turn with all of this attached. These all came out but one iv line on day 2 so it wasn't that long to have to put up with. It is an emotional decision and your mind will go thru a lot of emotional thoughts about life and our mortality but it is a decision I would make again even if this was unsuccessful because the chance of having an improvement in my pain makes it all worth it. I look at it now as my greatest challenge and achievement in my life. Going thru this and coming out on the other side has given me a new out look on life and everything that seemed so large before is now of less significance in comparison. I hope that this is some help and that you will feel peace in your decision. Im sure all will go well and you will be on my heart and prayers.
Thoughts coming your way from here in North Idaho.
Had it 30 yrs ago and I was blessed. It was a complete success and gave me my life back. Have been pain free from that moment and blessed to be pain free 30 yrs later. You will do great!!!!
Am so grateful for comments from these people thank everyone for this website!!!!
I had MVD in April and ist was 90 % curative. My post-surgery was nothing short of arduous and very painful. It was the hardest thing I had to do in my life. Nevertheless, most people do really well. I was off work for 6 months and had a major 4 day attack. It is not a guarantee, but it is the best mode of treatment. I was different in that I had some serious post op stuff going on. I wish you the best