Gamma Knife or MVD???

[jamiebright5]

I have had TN for about 2 years now. I stopped taking my meds and was blessedly pain free for about 3 months. Now, the pain is back with a vengence. I am trying to see a neurosurgeon, but I am terrifed of both the gamma knife and the mvd. My previous neurologist said that he did not see any blood vessels or tumors pushing on my nerve when he reviewed the mri and cat scans. I just don't know which way would be the lesser evil. Also, I would love to have another child within the next 2 years and I wondered how the radiation of a gamma knife would affect that. I have been on tegretol forever and I hate it. The last 3 months that I was off it, I was a different person. I had so much energy and was like my old self. I am tired of being a brainless zombie who just wants to sleep all day. The tegretol is not working as well as it used to so I am going to have to do something. Any opinions would help. Thanks.

[nancy99n]

Any surgery is scary and you need to find the best neurosurgeon with LOTS of experience helping TN patients.  You need to ask the tough questions -- what's the best and the worst scenario?  What are the side effects?  How many TN procedures has this surgeon performed?  

MRIs are notorious for not showing blood vessels, but Dr. Janeta (Pittsburgh) and Dr. Casey (Michigan) both experts -- have stated that invariably they find a blood vessel or vein when they perform an MVD.

All the experts say that MVD is the best option.  It gives you the longest lasting results.  I had a Gamma Knife and my neurosurgeon estimated it would last about 8 years.  I've also had two balloon rhizotomies -- his estimate is 2-3 years for me (I also have MS) and 5-6 years for a "normal" (non-MS) TN patient.

I agree with you that the drugs can make you a zombie -- and I just read an article that Tegretol is not good when pregnant.

I went thru three procedures in the last 2 years.  All were scary decisions to make.  But I am now pain-free and medication-free and I'm very glad I decided to have something done.  I was on Trileptal and it had started to mess up the sodium levels in my blood -- which could've caused kidney troubles.

My suggestion would be to keep doing what you're doing -- research and research some more.  Find an option that you can feel good about and go for it.  And most importantly of all find the very best neurosurgeon you can find -- that will make all the difference in your outcome.

Best of luck!

[redhead575]

Have you considered laser treatments for trigeminal nueralgia? There are no side effects and is noninvasive. You can google laser treatments for trigeminal  nueralgia and see if there is a center in your area. I highly recommend them having had them myself.