Posted by Larry (216.145.146.164) on September 28, 2000 at 21:07:20:
In Reply to: radiofrequency posted by penny on September 28, 2000 at 20:27:01:
The procedure is called radiofrequency trigeminal rhizotomy I believe. It was about 15 years ago and the Dr. name was Robert Maxwell.
He probably isn't in practice anymore but that is a teaching hospital. Their was quite a group of young people in the room so I would
imagine someone there can still do it. I am sure all of my records are lost or where I can't remember. You should be able to get through
by contacting the Neurology Dept. I don't remember the cost but I think our ins. took care of most of it. As I remember it isn't done unless
there aren't many, if any, options left. The procedure itself is an experience but worth it. It would probably involve 2-3 days for you.
The first day he went in and found the cluster of genes and froze? it. Then I spent the night. Since my worst attacks were at night he would
know if I was able to sleep, he had the right area located. The next morning he asked me about the night and I told him it was the first night
I had rested all night with no pain in weeks.
Later that morning he did basically the same thing only used different instruments. From the name I would assume it was radio waves to deaden
part of the genes.
They have to stay away from the eye because it is easy to paralyze the Cornea. That as I understand leads to a lot more problems such as keeping
your sight. That is why you need a Neuro who knows what he/she is doing.
It can be done more than once if things get real bad again; as I understand it. Like I stated in the
original message, I would definately have it done again as it seemed to help me. No cure but help.
I still take 480mg of Verapamil and 20mg of Oxycontin a day. Oxygen as needed and if the attacks reach the 10 level I go and get a shot of Demoral.
The Demoral puts me out so I can't do that unless I can go right home for the duration.
The combination of things have helped me to have a fairly nomal life. At least compared to what I was going through before that.
I've seen this procedure mentioned somewhere else, I think on this website somewhere. Keep looking and you may find it.
I wish you and your husband all the best. You have to keep fighting this demon and searching to find the right combination of things
that will make your life as normal as possible.
My prayers are with you.
Larry