Hi to everyone!!
Most of you will not remember me ( or know me) but I have a long story which I will not bore you with. In short, I got TN in 2009. Doc did gamma knife. I should have done more research; but I was in too much pain. I have it in all 3 branches. The gamma gave me Anesthesia Dolorosa. In Jan. of 2010 I had MVD surgery. Took the attacks away; but the AD was still there. The AD was more than I could bare. I found a doc to put in a stimulator for it. A miracle...just can't find another word for it. It took 90% of the pain away.
Now for the bad news. As the years went by it seemed to work less. I would say about year 4 it was not as effective.....or I thought my pain was so much worse. Not sure?? At year 5 ( 6 years after I got TN) my TN attacks came back. Doc wanted a MRI to see how bad. No MRI with stim in!! It had been in for 5 years and just was not working as well so I thought I might as well have it out. My pain doc told me that they are great for about 5 years and then our bodies are so smart it knows a way around the problem. The AD is not so good without the stimulator; but my pain doc gave me lots more opiods and I get by.
I would encourage anyone who is thinking about getting a stimulator to get it as soon as you can. Even if it only lasts the 5 years and maybe yours would last longer. To get even the short amount of time was so wonderful. Like I said I have in all 3 branches. So many docs say they won't put it in if V3 is involved as it could break. That is not true. If they put a little slack in the wire ( just in that area ) it will not break.

If anyone is interested in talking about this ( or anything els ) please email me. I don't come to this site so I won't see a reply. Please email me at calewark@me.com.

Thanks for reading and I pray that all of you have some pain relief. Take good care of yourself. Your sister with TN also,
Cheryl