Hello all! I had a MVD in November which made me feel better for 3 or so months. Now the pain is back, and my neurosurgeon is recommending Gamma Knife. Looking at info on the web, it looks like a great idea, but I was hoping to get some real life advice from people here. Tegretol is helping, but the side effects are awful and it doesn't make the pain go away all the way. I am sure I have type 1 since I've had some major shocks after the surgery, but I still think I may have some type 2 since the pain doesn't go away in the evening. I've read that Gamma Knife can make type 2 worse, so I'm really worried about that. I'm not sure my neurologist knows what he is doing. He has only tried me on 2 medications.
My brain is in a fog and I think I will rush into anything that has a chance of making everything better. Is there any big reasons I should hesitate about this?
50% of all first-time Gamma Knife patients have pain recurrence within three years. The stats are even worse when GK follows another procedure. I agree with Dancer that you should first wait several months to a year and see what develops as your MVD settles down. Then if you still have a failure situation, you might consider one of the trans-cranial stimulation devices. Dr. Ken Casey speaks of these alternatives in a video which has recently been linked from our Main page. I strongly suggest that you sit through the two hours of the video. It is highly informative.
Hi Jenny,
I agree with the rest… It can take awhile yet to see increased results from your MVD . In my case my neurosurgeon ( who performed my MVD a year ago) has advised my Neuro, GP and I that any further procedures ( like GK) could worsen my condition even causing AD. My MVD side is predominantly TN2, but also TN1.
I’m currently exhausting the medication route some more ( side effects & all) and trying some holistic methods before looking further into other possible options such as the stimulation devices Red refers too. My doctors are really hesitant about it for me for some reason…
Maybe talk to your doctor about possibly adjusting your med or dosing to help alleviate the side effects. Sometimes a slight increase can make a big difference.
(( hugs )) Mimi
I'm 4 and a half months out of my MVD and starting to get little twinges every day or 2…not really painful but quick little shooting thing that gets my attention…maybe the crazy spring weather too….I'm really hoping this is part of the MVD "settling down" :/
Thank you all so much for the replies! I don't like waiting, but the thought of ruining my best chance of this being better (MVD) is pretty scary. I want SO badly for life to get back to normal. I want to drive my kids places for the summer! And yet, I also want to drive them places until they can drive themselves. I will wait. Impatiently ;) Perhaps my doctor can prescribe a different medicine to add to what I'm on. I'm on 1200 mg of Tegretol and my vision is all whacky. Don't think I can take any more of it.
Thank you, Red, I will look up that video of Dr. Casey. As soon as I figure out how to find it...
Tunetokyo, I hope your MVD is settling and that everything goes smoothly!
Just my two cents, but I had my nerve stimulator implanted 7 months after my MVD failed to resolve the TN2 pain. In my case, the TN2 pain had been present for almost 10 years , so my NS felt the nerve was not going to heal.
Found a link to the video in my email, very handy! Will find time to watch it next week.
Christine, how long after the MVD did they put in the nerve stimulator?
My neurosurgeon hasn't been helpful with the TN2 type pain. He told me to go see a dentist for any pain that wasn't the TN1 pain! I cried when he told me that. I already had 4 teeth extracted and too many root canals. I'm pretty sure my teeth are not the problem. Really made me mad that he even suggested that. I wish doctors knew as much as they pretend to know.
Feafee ,
I had my MVD in January, and went back to my surgeon in July because the TN2 pain had returned. After doing another MRI to be sure there were no new compressions (mine were veins, so there is always the chance of new ones compressing the nerve) he suggested the PNS. I had the implant in August. My doctor is a TN expert. He practice is totally focused on TN, and he is one of the few that use the nerve stimulator for TN. I traveled from Georgia to NY to see him, and would do it again in a heartbeat!