Author |
Topic: blood vessel encircling trigeminal nerve (Read 6569 times) |
|
Tom
New Board Veteran
I love YaBB 1G - SP1!
Gender: 
Posts: 208
|
 |
Re: blood vessel encircling trigeminal nerve
« Reply #25 on: Nov 27th, 2002, 4:13pm » |
 Quote  Modify
|
I dare to say that even after the PET findings of Prof. Goadsby (i.e. the abnormal hypothalamus we all have, as said...) the CH still remain a riddle:
- how was it possible that hdbngr got relief from CH for ±one year due to trigeminal decompression only, as the hypothalamus wasn't touched ? - I wouldn't have expected that possibility...
- the PET results, the success of shrooms/triptans/lithium, the Italian electrostimulation of the hypothalamus, the sometimes described success of melatonin, and even the success with sex and/or other physical exercises (Charlie's Method included !) give evidence for a central (hypothalamus and serotonin borne) cause of CH.
- but tooth treatment, anesthesia or electrostimulation of peripheric nerves, peripheric botox injections, and the trigeminal surgery seem to be successful too (sometimes...).
- and the not appreciated opiates seem to work sometimes, too.
- Furthermore: CHeads report first manifestations of CH after head injuries, tooth extractions, different operations etcetc
Thus, the more informations I get about successful CH treatments and about their possible causes the more I doubt that CH are a homogeneous desease and the more I beleave that they are a "syndrome", i.e. "only" symptomes of possibly very different pathological agents.
Well, it's not even my opinion, it's only my impression so far.
Thomas
P.S. Please don't misunderstand this post as a lobby for Ali's surgery !
|
| « Last Edit: Nov 27th, 2002, 4:56pm by Tom » |
 IP Logged |
Thomas/Munich
|
|
|
dannyboy
New Board Old Timer
Docs didn't design the machine they're working on
Gender:
Posts: 329
|
|
Re: blood vessel encircling trigeminal nerve
« Reply #26 on: Nov 29th, 2002, 9:04am » |
Quote Modify
|
Would a headache that came in exactly the same cycles as a CH but only ever reached a kip 3, still be a CH?
|
| « Last Edit: Nov 29th, 2002, 9:09am by dannyboy » |
IP Logged |
Bedside manner is no substitute for a correct diagnosis - Bill Gates
|
|
|
hdbngr
New Board Old Timer
Gender: 
Posts: 257
|
|
Re: blood vessel encircling trigeminal nerve
« Reply #27 on: Dec 2nd, 2002, 10:50am » |
Quote Modify
|
Tom -to answer your question:
Me either, except what was done wasn't only a microvascular decompression. From what was explained to me, my procedure was experimental, and I was the ninth person in the U.S. to have it done, ever, and the first in my state. The Doc consulted with two others physicians, one at Yale, and one in Oregon, on how to do the procedure. This was some sort of variant procedure.
They mucked around in there quite a bit, hence the long recovery time. I have the notes from the procedure, which I don't claim to understand half of, but I know the nerves were separated along the entire brain stem, down into the neck. But when a Doc said he thought he could help, I had to try it. The Doc was horrified that physicians were cutting the nerves on other patients, he already knew that procedure didn't work.
When I said relief, I didn't mean to imply"cure". I was not pain free, and still had flare-ups, but they WERE reduced. Why? If I could explain that, there would be a cure availalble.
What is interesting is they did find something wrong with the nerves, stuff that did not show up on any of the tests I have had in the last six years.
The hard part is wondering if my body would have taken that "break" anyway, had I not had the procedure? I will always have to wonder about that, but at the time, I had no alternatives at all. I was miserable, and when brain surgery starts to sound like a good idea, you know you have hit the bottom. I was pregnant at the time, and was not allowed any meds. They had abrubtly discontinued my Sansert/Lithium combo which had been helping because of the side effects associated with pregnancy.
All of you know the intense pain and stress of cluster headaches, and with no meds at all, preventative, abortive or pain (beyond Tylenol) the body can't handle it. The headaches were inducing labor at a very early stage, and the OB and neurologist felt surgery was a viable alternative to the constant pain. Any of you who want to know, brain surgery is less painful than a cluster headache cycle, so is childbirth. Cluster head pain is much, much worse.
Again, I wouldn't do it in the face of alternatives, but wanted to offer information to those who were thinking of trying such a procedure at their Doc's urging. Mine was very honest with me, and said he could offer no guarantees of long-term relief. If a Doc does guarantee results, run screaming, he's a quack.
It's still me and my pain, and I don't know why I hurt or where it originates. The latest theory from a new neurologist is they didn't go far enough down???, and I am looking into the hypothalmus research closely, which I don't believe was available in 1999 when I had this done. As I mentioned before, proceed with caution. One important note: I have a healthy three year old little boy now, that I don't think I would have carried to term otherwise.
|
|
IP Logged |
Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss