I've gone as far as to talk with a neurosurgeon about this procedure.  FOR ME, it would be an option of absolute last resort.  Please think very carefully before considering this as an option.

Ray

Ray wrote on Jan 25^th, 2009 at 5:54pm:


Yeah, I intend to think hard on it. Friday I'll be seeing pain management to discuss all of my options. They're working WITH neurology at the clinic I go to, so my neuro will be in on all of the discussion, along with my family.

But, I figured since I found no real results with searching, that I'd ask if anyone else had some experience with this procedure.

Mystina

A few years ago my neuro recommended I sit back and wait for this one to improve. She seemed to think it had the best chances. If I remember correctly the study she showed me was ablation of a small portion or the lower anterior hypothalamus, published in one of the neurological journals maybe 3 years ago or so.

I think the problem with surgeries in general is that at first they seem to work--CH ends for a while, but eventually attacks return. Seems any kind of trauma activates that stop-loss mechanism in the brain that makes you only focus on the most serious trauma. Kind of like that episode of house a few years ago where he broke his finger to distract himself from his leg pain while in a bet with Cutty that he could live without Vicodin for a week. Eventually the broken finger or brain or whatever starts to heal and you get hit again. In fact you were probably getting hit the entire time, you just didn't feel the pain. The same process is probably what causes phantom hits--if the blood vessel has swollen enough to trigger autonomic reaction such as fever, flushing, horner's syndrome etc it has certainly swollen to the point of causing pain. The stop loss thing is my theory for why deep brain stimulation seemed to work for the first year or so but after that there were diminishing returns.

Ablating the portion of the hypothalamus that is having the malfunction serotonin-histamine storm seems like a much more likely scenario long-term for a "cure". How that will affect other areas of people's lives (endocrine systems and related hormones indirectly controlled by the hypothalamus), other areas affected by histamine (immune system) and serotonin (digestive system, moods) remain to be seen. Not to mention, the hypothalamus is deep within the brain, making the surgery risky.

What have you heard about this procedure?

Katy

Well, at this point, it's not considered an option for me.

Due to how badly I reacted to just lidocaine being injected around the nerve  (no steroids could be used) they felt like it could possibly cause me constant pain, rather than the opposite. The nerves in the left side of my face hurt for 2 days afterwards, constantly. The clusters were godawful, and I could tell when one would hit. I was miserable.

Mind you, I don't know if the doctors are just afraid to treat me, or if this could actually be a result.

So I'm gonna just stick with my D.H.E. and 02.