I received an email from someone who had read the blog and had a lot of questions about my surgical and treatment history.
I realized I have not shared that with you. For those who wondered here is a quick rundown:
I was diagnosed with trigeminal neuralgia in 1976.
In 1977 I had a decompression procedure, not an MVD which many people know as a major surgery suggested for TN. As a result of the birth defect that caused the tn there are dozens, maybe more, of tiny extra blood vessels throughout the left side of my brain (the affected side). The first surgeon decompressed/ removed as many of them as possible. As a result I was immediately 100% painfree.
Unfortunately the blood vessels grew back. 3 months later the pain returned with the same vengence as initally.
I then tried a rhizolysis (a procedure where a needle in placed into the trigeminal nerve, entering through the cheek). It was done using Marcaine, an anesthetic. There was no benefit or problems. This was 1998.
In January, 1979, I had a thermocoagulation rhizolysis, the same procedure only this time using heat in an effort to kill the nerve.
That also did not help but also caused a lot of problems including phantom pain and numbness throughout the entire left side of my face, loss of feeling in my left eye. There were also some problems swallowing. In addition I lost the sensation and taste in the left side of my mouth and tongue.
In March, 1979, Dr. Peter Jannetta did an MVD, also called a Jannetta Procedure. This did not help but left me with a 100% paralysis of the left side of my face.
1980 - another decompression, like the first. This was during the summer when the pain was somewhat better just because I could tolerate the weather better - no wind, little breeze or cold. As the weather worsened so too did the pain.
In 1981 was a trigeminal tractotomy. This is done through the back of the neck in an effort to cut the nerve close to the root.
In 1986 I had my first implant, a dorsal column stimulator. This worked about 85%, I could wash my face, walk in the wind, etc. The eye pain remained unchanged.
Sadly the next few surgeries were from problems with the implant.
I lost the first that helped so much, and then the second, which did not help at all, to infections. In both instances there were external reasons for the infections and not directly related to the surgery or the device.
In 1991 I had the current experimental implant placed on the covering of the brain stimulating the sensory cortex.
Given the problems I am having, that I wrote about in the last couple of posts, I am becoming more convinced that it may have to come out. If it does I do not know what the next step will be. Or if there is another option.
At any rate, this is my story.