Radio Frequency Lesion

My CH attacks began when I was 13 years old but were mis-diagnosed for several years. CH was finally properly diagnosed when I was in my early 30's. I was prescribed almost all the medications available to treat CH and not one helped rid or even control the pain.

I was a typical C-Head. My pattern was once a year, beginning around October and lasting for 3 months. Like clockwork, I had 2 daily attacks with runny nose, droopy eye, etc. - each lasting 40 mins. Then I would go approximately 9 months pain free - only to get them again the following fall. It was the worst pain I had ever experienced, ever, and it lasted 23 years of my life, until that final attack 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 Massachusetts General Hospital in Boston by Dr. William H. Sweet, who was 78 years old at the time. I will never, ever forget him and am so thankful to him.

The procedure, in my non-trained medical words, is that he burned 1 of the 3 branches of the trigeminal nerve. I am, and have been totally numb (very similar to a dental Novocaine) 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 - 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 there were risks with the surgery, i.e. loss of facial expression, hearing in that right ear, or visual risks, 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 does my CH free life. I'm told that the feeling in my face may one day return 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.

Last modified: 2002