I truly do understand what you are going thru. I had MVD 3 yrs. ago and I'm also miserable. I think I waited too long and I had also had Gamma Knife, which I never should have done either. My well known surgeon had now diagonased me with Anesthisia Dolorosa and I'm miserable. No one understand it. But I'm getting pretty desperate. I'm so miserable. I have a complete melt down about one a week then pick up the pieces of me that are left and try to go on. No one understands it. All i know is I don't know how much longer I can take this discomfort.
Timtam said:
Hi all , I had Mvd done over 3yrs ago now and my whole left side of my is still numb , and no doctor will help me and no one understand just what I go through every day.
Thank you SO much for all the great replies on this thread. I have read every one of them however I was out of town and had a hard time reading on my little iPhone until today.
So sorry Santafered about your experience. Please hang in there and have hope. I know that this is a rare disorder but I have read that there are some researchers busy trying to figure it all out. Also know that there are others on here who literally feel your pain. It helps sometimes just to know that. I will pray for you.
I see that some of you had the MVD sooner that later as I desire. I will wait until the end of the summer and until I've tried a couple more drugs (my Trileptal which was perfect at first is now quickly fading out even with huge increases). I'd rather have brain surgery when my kids are back in school. By then I will be at the 6 month mark or a little more and have tried 2-3 drugs so my neurosurgeon will know that I have given that a shot. He is very experienced with this disorder and surgery and respected as among the best if not the best neurosurgeon in Indy. He has a special interest in TN and has devoted a good part of his career to it. He trained under Dr. Tew in Cincinnati who is well known to TN patients.
Again thanks all for your wonderful responses and let's keep this loop running as it seems to be helpful for many :).
Unfortunately I waited 10 years. Way, way too long. I had Gamma Knife, the Mvd. My surgeon was in Dr. Peter Janette's group in Pittsburg. He created the MVD surgery. But Dr. Sekula really thinks with the Gamma Knife and the amount of time the trigeminal nerve was severely damaged. The original pain is gone, and I had no trouble getting over the surgery. But now he has diagnoised me with the other. I went to Pitsburg to him. Are you in Cinn. area? I'm in Lexington, ky. My advise is just don't wait too long. I think that is what started mine to become so bad. But my job was important, as my husband had been disabled for quite some time. So I tried all other options. The first 6 1/2 years I was on strong dose of Trileptol. Then all of a sudden, it quit working at all. Good Luck.
mybell said:
Thank you SO much for all the great replies on this thread. I have read every one of them however I was out of town and had a hard time reading on my little iPhone until today.
So sorry Santafered about your experience. Please hang in there and have hope. I know that this is a rare disorder but I have read that there are some researchers busy trying to figure it all out. Also know that there are others on here who literally feel your pain. It helps sometimes just to know that. I will pray for you.
I see that some of you had the MVD sooner that later as I desire. I will wait until the end of the summer and until I've tried a couple more drugs (my Trileptal which was perfect at first is now quickly fading out even with huge increases). I'd rather have brain surgery when my kids are back in school. By then I will be at the 6 month mark or a little more and have tried 2-3 drugs so my neurosurgeon will know that I have given that a shot. He is very experienced with this disorder and surgery and respected as among the best if not the best neurosurgeon in Indy. He has a special interest in TN and has devoted a good part of his career to it. He trained under Dr. Tew in Cincinnati who is well known to TN patients.
Again thanks all for your wonderful responses and let's keep this loop running as it seems to be helpful for many :).
15 months after initial diagnosis and medicinal treatment which worked somewhat but was unacceptable long term ( too much lost mental dexterity). Good luck. (P.S> totally pain free since my MVD last July 17, very fortunate)
Surgeons typically want to wait until the meds stop working before they will perform surgery. However, you have to be careful not to wait too long because you may not be a candidate for MVD due to age or other health issues. Also I understand that the more damaged the nerve, the less chance of a pain-free outcome. The trend seems to be moving towards doing surgery earlier. My surgeon left it up to me and I kept putting it off until I could no longer stand the pain. I wish I had done it several years earlier. I took meds for over 6 years and spent all that time drugged up on Tegretol. It feels so good to have a clear head and no pain.
I was told by my Neuro that there are many reasons for TN and it is not always due to a compression, he told me to wait and see how I got on with medication. I am now in remission and have been for two years, I think this is why they do not rush into it. I would wait 12 months unless of course it is unbearable.
I had my MVD 25 years after my initial diagnosis, and it didn't make much of a difference, so I wouldn't recommend waiting too long . My first occurance of TN was in 1985. It only lasted a couple weeks, followed by a 12yr remission. In 1997 I suffered for about 2 month, followed by a 7 year remission. In 2004, the sessions of pain lasted several months. I decided to do the MVD when the periods of pain were longer than the periods of recession.
I interviewed 3 Neruologists and each recommended the surgery. My insurance wouldn't cover the surgery unless I tried a variety of drug treatments without success.