Posted by Janis Walker on January 21, 1999 at 13:38:56:
In Reply to: Surgery - HELP posted by Barbara D. on January 19, 1999 at 12:00:47:
Hi, Barbara,
The surgery I had was called, not sure of spelling, Trigenital. It means that they cut 3 nerves. Nothing worked for my headaches. My headaches RULED my life. The only med's that "helped" me were irgotamines. I used Caffergot Suppositories. And, yes, I abused them. Took too often. But the pain was just umbareable.
The reason I had the surgery was because the cafergot was shutting down my vascular system. I had a slight pulse in the ancles and low blood pressure. The drugs I took, (not proven, but my dr's believe it was the cafergot) caused the lining of my heart to thicken, which caused me to have the mitral valve replaced. It was very debateable whether or not I had had Rhuematic Fever. But, after surgery the dr's tested the tissue and said NO ... I had not had rhuematic fever.
My surgery was done at Piedmont Hospital in Atlanta, GA. I was scared. I was told that I would probably lose the hearing in my right ear. Did not. :-) Was told i may have paralysis of the right side of the face, that a plastic surgeon could fix. Did Not. :-) And lastly, that i may be paralized on the right side of my body. DID NOT. :-)
There was no real pain from the surgery. They shaved about 1/3 of the right back portion of my head. Because I was numb after the surgery on the right side of my face and head, I had no pain from the surgery.
Also, let me mention this. I had chronic Cluster Headaches for 17 years. Never had a true break. My best days were 2 or 3 headaches lasting 20 mins. Have had as many as 16 per day.
I have RP, Retinitis Pigmentosa, which is a genetic eye disease causing nightblindness and tunnel vision. Cluster Headaches are classified as an Ocular Headache. There are others on the RPList who suffer from CH. I beleive in my case that Horner's Syndrome / CH and my RP are all related, may be the same disease. Mine is a recessive gene many that there is no family history of CH or RP.
For me, the surgery gave me a new life and I have no regrets. If I can answer any of your questions, please do not hesitate to ask.
Best of luck.
Janis