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Old 06-11-2010, 02:21 PM  
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KIMMERS's Avatar
Join Date: Sep 2006
Location: Colorado
Posts: 4

Hi Tina, I said I would respond so here I am. Many of you may not know me. I haven't posted here for several years. I frequent Brain Talk. I have bilateral TN. I've had it for 18 years. I've had an MVD on both sides, one successful for 9 years, one unsuccessful. I had Gamma Knife on the unsuccessful side. Like all of you, I've been on many many different drugs including the opiates which barely touched the surface. I didn't know what to do anymore as I couldn't live with the pain. A strand of hair would send me into tears. I finally found a dr. that would change my life forever and I didn't have to travel out of the state where I lived. We tried a few different cocktails without success. My dr suggested we try stimulation. The first stimulator I tried was a spinal stimulator. We believed this would work, the trial worked just fine. After the real battery was implanted and the leads were implanted into the spine it just didn't work. The leads had to be implanted so far up into the vertabrea to hit the right nerves that the leads moved. Then with the hospitals approval, since I would be the first patient to have the implant for this, we tried the PENS. Peripheral Neuro Stimulator. We did a trial period of 4 days to see if this would help with the pain. It did so we went ahead with the implant. The battery is implanted under my left arm along my bra line. The battery is about the size of a silver dollar but thicker. You can't even see it. It is rechargable. I have the control of turning it off or on, up or down depending on how much pain I'm in. About a year later, the pain on the right side started coming back. We made a decision at that time to go ahead implant another stimulator since I've had such a great success with the other one. Insurance fought me a bit on this one, but we won. I was asleep for the entire procedure on both of these. It's usually only the spinal stimulation that you're asleep and awake so they can tell which nerves they are stimulating. My leads go up my back, into the back of my head, behind my ear and into my cheek and one over the upper teeth. Each lead has 8 electrodes on it. They have literally saved my life.

Don't get me wrong. I still take a few meds. I talk trileptal, topamax and a very low dose of trileptal. This doesn't mean the same for you. I was on a heavy dose of narcotics before the the implant to the left side. The stimulator isn't designed to give you a 100% pain free life. I have several days where I am pain free because of the stimulation and the meds. In the winter or when the weather is not so good, my pain levels go up. This is what the stimulator is for. It is such a relief. I've had my stimulators now for about 6 years and I still see the same dr. I will NEVER see another dr. for my TN. He is a Pain Management Specialst. This is it in a nut shell. Just be sure that your dr. has done this before and knows where to run the leads to get the correct stimulation to block the pain. The stimulation sends a message to the brain basically telling it that there isn't pain there. So where you're having an attack or a bad attack, it blocks a lot of those signal or mis-fires.

Please feel free to ask me any questions you might have.



Last edited by KIMMERS; 06-11-2010 at 06:58 PM.
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"Thanks for this!" says:
Burntmarshmallow (06-11-2010), Mark56 (06-11-2010), Rrae (06-11-2010)