Posted by Pat Melchionno (166.68.134.174) on October 05, 2001 at 09:22:05:
In Reply to: Question for all episodics..please read!!! posted by Jayne on October 04, 2001 at 22:02:56:
For 23 years, it used to be once a year for 3 months, 2 a day for 40 mins. until that final year in 1988 when I had 'em for 11 months straight! Out of desperation, I finally opted for the sergery. Read my story below...
I am 48-year-old female. CH's began when I was 13 years old. I wasn't properly diagnosed until I was in my early 30's. I was prescribed almost all the medications listed in this site and not one help rid or even control the pain. I was a typical C-Head in that my pattern was; once a year, beginning around Oct. and lasting for 3 months. I had 2 daily attacks, like clockwork, runny nose, droopy eye, etc. etc., each lasting 40 mins. Then I would go approx. 9 months pain free only to get them again the following Fall. It was the worst pain I had ever experienced, ever and it last 23 years of my life, until -------- that final episode in 1988 when the pain was constant!!! I was into my 11th month straight when I finally underwent a surgical procedure called "Radio Frequency Lesion" at the Mass General Hospital in Boston by Dr Wm H Sweet, who was 78 years old in 1988 and who is either retired now or deceased, but who I will never, ever forget and am so thankful to him. The procedure, in my non-trained medical words, is that he burned one (1 of 3) of the branches of the trigeminal nerve. I am, and have been totally numb (very similar to a dental Novocain) from my upper right lip to the mid section of my skull, half of my nose over to the beginning of my ear! But guess what? I haven't had a CH since that surgery, not one!!! The procedure, as invasive and awful as it sounds, was a miracle to me having suffered for 23 years! The numbness is not a mistake from the surgery, it was the intent; it was a part of the procedure. I absolutely hate the numbness and not one day goes by that I don't think of it and feel its effects but if I had to do it again, I'd hate to, but I would...in a heartbeat. We C-Heads know what that pain is all about and as bad as this numbness is, it's not as bad as even one attack! Although it was possible that I could loose my facial expression or hearing in that (right) ear, I still took the chance but was fortunate or lucky enough to have none of those problems. I have more reason to smile now than I ever did and if you look at me, you'd never know I ever had any procedure done. I was awake during the procedure and they just put some kind of laser needle into your forehead area to get to the trigeminal nerve. You can feel the buzzing sensation and it's a little uncomfortable, but nothing to write home about. It's been 13 years now and although the numbness remains so doesn't my CH free life. I'm told that the feeling MIGHT come back someday and my only hope is that if the CH's come back too, there'll be a less invasive way of curing this debilitating demon, if not, I'll do it again! I'm not sure if this is an option or consideration for anyone else, it's a personal choice that I wanted to share with you. Thank you for your time, good luck and God Bless. Keep the faith!