My Experience with Neurostimulator Implants

I have suffered with Bilateral TN, and ATFP for almost 13 years now. I have posted 2 stories about myself on Facial Neuralgia Resources. Back in 1992 is when I first felt the pain begin, it took almost 2 years for the medical field and dentist to figure out what I had. I, like many others, went through dental work, but not to extreme. I had one tooth pulled and a root canal in another, which is more than was necessary.

After finally being diagnosed by my PCP, he referred me to a neurologist. I tried all the anticonvulsant med, antidepressants and nothing seemed to help. After about a year or so, he then referred me to a neurosurgeon. At this time, I had an MRI done, which showed plain as day, where the blood vessel was and what was going on to cause all the horrible pain. We talked about all the different procedures and decided since I was only 28, that I would be a good candidate for a MVD. We did the MVD and I was thrilled with the outcome.

Three years after I had the first MVD in 1996, I started to feel pain on the left side. I went into a state of denial at first, but then the pain was so bad, that I couldn't deny it any longer. It was 100 times worse on this side. I had all they same symptoms as before, but you couldn't even touch that side of my face without sending me into tears. It would send electric shocks, jabs, like someone had a knife in your head. I thought the first time was bad. I didn't want to live through this again. I always wondered why this was happening to me again.  I didn’t even know that someone could have this on both sides.  Back then, I didn’t have the internet like we do today to do all the research.

I again tried the meds, which didn't work, so my doctor did another MVD, this time I had a different surgeon as I had different insurance. This MVD didn't turn out like the first one.  My doctor couldn't find any compression, so he decided to cut the nerve a little. The only thing this did was help get rid of the electric shock feelings. I kept going back to him afterwards because I was still in pain and all he told me was, "I don't know what else to do for you." I have heard that statement more times than I can count.

I was ready to give up, I felt like I hit rock bottom. I have 2 children and a husband that I've been married to for 16 years. They have seen me go through all of this. It isn't fun to cry in front of your children, it is very upsetting to me, and to them. They feel very hopeless. Needless to say, this is a very hard disorder to comprehend. People look at you and don’t see anything wrong on the outside, but on the inside, we are hurting with pain and depression.

I have tried Gamma Knife, hoping to build up scar tissue around the nerve, this procedure was a total failure.

Finally some good news. In August 2003, I went to see a Dr. at the University of Colorado Anschutz Center, the first dr. was a neurologist, he referred me to the pain management clinic. This is the best thing that has happened to me since my first successful MVD.

Dr. Alan Brewer of the pain management clinic saw me and we tried a few things, a few new meds, then he tried nerve blocks, which I had never had done before, but that didn't work. In the meanwhile, he kept saying "I'm not giving up on you."

In January 2004, my doctor implanted a spinal neuro-stimulator, this worked well for about 3 weeks, but the leads somehow slipped, so my doctor had to remove them. We tried it again about 7 weeks later, but for some reason, the leads kept slipping and Dr. Brewer couldn't get the coverage where he had before, he said maybe because of the scar tissue. So, we didn't move ahead with that implant.

Instead, a new battery, by Advanced Bionics had just been FDA approved, so I waited for the hospital to approve the procedure. After approval, we moved on with the implant. This time Dr. Brewer implanted a peripheral neuro-stimulator. I have 2 leads implanted. One in my cheek, and one in my upper lip area. This is all for the left side of my face. The dr.'s are now calling it ATFP since the shocks and stabbing feelings are gone, and I'm left with just burning, pins and needles. I was in constant pain until the implant. It is a wonderful thing. I have not been without pain until now for a very, very long time.

On Feb 7, 2005, we did an implant of the same thing on the other side as the pain was returning from the first MVD.

If more people knew about the stimulators, which eventually they will, I think more people would be in less pain, especially those who aren't good candidates for a MVD.

I am working with a friend, Bridget Kelly, she is listed in the Striking Back book under Motor Cortex Stimulators, to help spread the word about the stimulators. There are more doctors doing them now than there were 2 years ago.  You just need to do your research and make sure your doctor is familiar with the different products available to you.  I believe when more doctors learn what the stimulators can do for the people with facial pain, which is one of the hardest pains to treat, they will want to jump on board.

Kimberly
email: datbaby1@msn.com