Posted by henry momberger (209.255.180.245) on August 18, 2000 at 19:05:06:
It's been two years since my last round of clusters. They started again and I hit the web and found this site. 7 or 8 years ago, before imitrex, I was wiped out and ended up in the emergency room numerous times until there was no choice but to admit me. An expirimental procedure was done (at that time it had been performed on 3 or 4 others in Texas) the possible benefits outweighing the risks of the surgery. The exact name escapes me but it was an adaptation of a procedure used to treat TIC. If you provide the following to your neurologist, he should know what you are talking about. the important words in the name are Radiofrequency neuaralgia of the trigeminal nerve. The basic procedure is as follows:
The patient is put completely under and an electrode is run through the cheek and up through a canal in the roof of the mouth to the base of the brain. The patient is then brought into a twilight sleep to assist the surgeon. The surgeon gives the patient shocks until a shock produces a sensation in the area where the CH pain is felt. The nerves in that area are then destroyed and additional shocks are given until another area is found and again, the nerves are destroyed.
According to the surgeon, he wanted to perform 3 lesions but I got a CH while on the table OR the procedure was so painful, that it got real ugly real fast and was aborted after performing only 2 lesions. However, I did not have another CH for five years. Because the procedure was an adaptation of the TIC procedure, the nerves were expected to regenerate in four or five years, at which time the procedure could be performed again if needed. This was complete relief, with absolutely no indication that I'd ever had a CH.
After 5 ½ years they came back with the same intensity and I went for the surgery again. Unfortunately, the same surgeon was unable to get the electrode thru the canal, became completely flustered and gave up after 6 or 7 tries. I sought out another surgeon, he attempted it and was also unable to get the electrode where he wanted it and gave up rather than causing additional trauma. But guess what, the Chs stopped anyway. My own wrong opinion is that even though the two procedures were aborted, something happened and I again had total relief for 2 ½ years. (It's theorized that the canal originally used closed up for some reason. )
Conclusion: I highly reccomend this procedure be considered. Another option that is supposed to be as effective is by glycerin injection. Rather than destroying the nerves, glycerin is injected and it's supposed to have the same effect. If I have the procedure again, I think I would have them administer a shot of Imitrex immediately before the procedure, anticipating that a CH might occur during the procedure and that the Imitrex would abort the CH. If the procedure were to take over an hour, then I would request that the second shot be given whether it was needed or not just in case. Good luck to all