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(Message started by: atwitsend on May 20th, 2003, 12:09pm)
Title: newest news in the usa
Post by atwitsend on May 20th, 2003, 12:09pm
First of all - sorry if i confused anyone with my message from last night - rambling i guess - was anxious to see what my news station had to say about the neuro-stimulator I am considering to have implanted.

Anyway - not alot of info was given through the tv report last night but I am in the process of finding a way to contact the doctor who was responsible for placing this device into a CH patient that is located in my state.  

not too much to "ramble" about for now - will update later.

I am hoping to have a bit more info on this neuro-stimulator surgery & it's results.  My object for sharing this info with all of you is so if it works out & I have beaten the beast - I will be able to help everyone out on this site with info so you yourselves may consider this option.
Title: Re: newest news in the usa
Post by cathy on May 20th, 2003, 12:22pm


Hi Kev...glad to see your a bit more positive about things....let us know how you get on if you go down this road, or not....would be interesting if you could get any info about the chap that already has this implant. PF vibes to you.

Cathy.. :)
Title: Re: newest news in the usa
Post by TomM on May 20th, 2003, 12:25pm
Am I off base here? I smell snake oil.
TomM
Title: Re: newest news in the usa
Post by cathy on May 20th, 2003, 12:36pm


And you wonder why people don't share new info.... >:(

Cathy
Title: Re: newest news in the usa
Post by TomM on May 20th, 2003, 1:05pm
Cathy--I asked and I call it like I see it.
Tom
Title: Re: newest news in the usa
Post by Margi on May 20th, 2003, 1:12pm
um, Tom?  how is a near suicidal sufferer asking about a surgical procedure considered snakeoil?  Atwitsend posted last week and he really WAS at his wits' end.  His doctor recommended he have that occipital nerve stimulator implanted and he was seeking our advice as to whether it's worth it or not..he's not trying to sell anyone anything.
Please be careful ....jumping to conclusion and mislabelling could very well be lethal.  
Glad to hear you're doing ok, Atwitsend.  Glad you're hanging in there, friend.
Title: Re: newest news in the usa
Post by TomM on May 20th, 2003, 1:19pm
Margi--Geez, I thought I was giving an opinion. I've been suicidal but would never consider this. Messing with your optic nerve can be blinding.
IMHO. OK?
Tom
Title: Re: newest news in the usa
Post by cathy on May 20th, 2003, 1:26pm


Tom as I read it you were not giving an opinion. However if could have been bothered to give Kev your opinion on the subject and not just thrown in a stupid remark, then maybe I wouldn't be pissed off, but in my opinion you were ridiculing (sp?) his post. Here is someone about to undergo a radical treatment and is willing to share the results good or bad. I think you should be thanking him not taking the piss!!!

Cathy
Title: Re: newest news in the usa
Post by Margi on May 20th, 2003, 1:29pm
sorry Tom - didn't mean to come across that nasty, I just worry that labelling someone that quick and not knowing the whole story could cause the new person to be afraid to post and lose a valuable resource in the process.  More of a general heads up for everyone than a personal attack on you, Tom.  I apologize.

This procedure actually is producing some interesting results - it's detailed over at the OUCH website.  
Title: Re: newest news in the usa
Post by TomM on May 20th, 2003, 1:43pm
Just to set the record straight, the snakeoil comment refers to the device and in my opinion, is dangerous when dealing with the optic nerve. Nothing malicious intened toward Atwitsend.
Tom
Title: Re: newest news in the usa
Post by cathy on May 20th, 2003, 1:47pm


Okay Im sorry then Tom I misunderstood your post.....do you know much about the device how does it work then, Im genuinely interested...

Cathy
Title: Re: newest news in the usa
Post by Margi on May 20th, 2003, 1:50pm
Tom and Cathy
f you go to the OUCH website, click on the surgery button in the first menu on the left above the map.  The procedure is detailed there and is akin to the theory of a pacemaker.  here....I forgot to say you need to click the research library first.  try this:  http://www.clusterheadaches.org/library/surgery/occipital_block.htm

It actually could make a lot of sense. WAY less scary than gamma surgery.

Atwitsend, we really are interesed to hear how this turns out for you and can't stress enough how much we want you to find pain freedom.
Bring your family here so they can start to understand what you go through.  
Title: Re: newest news in the usa
Post by cathy on May 20th, 2003, 2:01pm


Thanks Margi....that was really interesting....this is interesting stuff, they are having a degree of success with this, one chap has gone from being chronic to 7 months pf....still maybe he's just gone episodic again...who knows.

Cathy
Title: Re: newest news in the usa
Post by Margi on May 20th, 2003, 2:13pm
you know, Cathy, sometimes I have to wonder about some of these 'cures' we hear about.  Did it really work?  or did the cycle just end on it's own?  But hearing that a chronic did go pain free for any time at ALL is encouraging.  (I think chronic and episodic are two entirely different beasts.)

We thought for a long time that shrooms kept Mike in remission for almost 3 years.  Maybe they did.  Or maybe he was just pre-destined to have a long remission that time.  They sure didn't do diddly for him once he did go back into cycle and had the longest cycle EVER.  Did the prednisone, then the lithium/verapamil help?  Or did the cycle just finally die out after 6 long months?  I guess we'll never know..

Kinda like tryin to stop a sunrise sometimes, isn't it?
Title: Re: newest news in the usa
Post by brain_cramps on May 20th, 2003, 2:17pm

on 05/20/03 at 14:01:02, cathy wrote:
...one chap has gone from being chronic to 7 months pf....still maybe he's just gone episodic again...who knows.

Having never been chronic, I might be way off-base with the next comment, but here goes...

If I was chronic, I would love to be episodic.

Just my 2 cents (CDN) worth,   (after exchange rate, probably worth about 1.45 cents US   ;))

grant     8)
Title: Re: newest news in the usa
Post by Margi on May 20th, 2003, 2:24pm
I dunno Grant...

I've talked to Elaine, Linda, Ted, etc. about this very subject.  They all feel real sorry for the episodics.  (As the episodics feel bad for the chronics I guess.) Someone made the analogy that a chronic is like a life jail sentance.  Yes, it sucks bad but you get used to it.  Being episodic is like being punished and tortured once every year or so for the same damn crime.  Being given the freedom and then having it yanked out of your grasp again and never really knowing when you're going back to jail and for how long?  Yeah, I see that point.
Title: Re: newest news in the usa
Post by cathy on May 20th, 2003, 2:27pm

on 05/20/03 at 14:17:50, brain_cramps wrote:
If I was chronic, I would love to be episodic.
grant     8)


Really..... ???..(sorry I just couldn't resist...)   ;D
Title: Re: newest news in the usa
Post by brain_cramps on May 20th, 2003, 2:30pm
Point well taken, Margi    :-X

grant    8)


P.S.  Cathy:  I knew someone would have sonething to say about that.     ;)   Just never looked at it from the 'other side' (like Margi pointed out).
Title: Re: newest news in the usa
Post by cathy on May 20th, 2003, 2:35pm

on 05/20/03 at 14:13:41, Margi wrote:
Kinda like tryin to stop a sunrise sometimes, isn't it?


Margi...I have sat and read that sentence over and over and no we really wouldn't want to stop a sunrise....if we did stop it we'd never get to see the sunset...now that would be sad... :'(

Cathy
Title: Re: newest news in the usa
Post by cathy on May 20th, 2003, 2:37pm

on 05/20/03 at 14:30:22, brain_cramps wrote:
 I knew someone would have sonething to say about that.  


You naughty boy Grant....trying to cause twubble...10 spanks from me and margi!!!

Cathy  :)
Title: Re: newest news in the usa
Post by Margi on May 20th, 2003, 2:40pm
:) i guess you're right Cathy - it wasn't the best analogy.

I should have said 'it's a feeling like being tied to the railroad tracks and not being able to stop the oncoming train.'  I just meant that I sometimes think clusters are going to happen no matter WHAT we do or don't do to cure them.

Just like the subject of food triggers....these guys are gonna get hit no matter what they eat or drink, if they are in cycle.  And they're not going to get hit, when they're out of cycle.

ok, i'll shut up now.  major case of verbal diarhhea here today.  slow work day.
Title: Re: newest news in the usa
Post by Mack on May 20th, 2003, 2:50pm
atwitsend,
Thank you very much for sharing you're experience here. Please keep us updated. I'm sure alot of people here would appreciate it.

Best of luck and hopefully pfdan's ;D

Mack
Title: Re: newest news in the usa
Post by cathy on May 20th, 2003, 2:50pm

on 05/20/03 at 14:40:47, Margi wrote:
:) i guess you're right Cathy - it wasn't the best analogy.

No...I thought it was an excellent analogy...

Cathy  :)
Title: Re: newest news in the usa
Post by brain_cramps on May 20th, 2003, 2:58pm

on 05/20/03 at 14:37:53, cathy wrote:
You naughty boy Grant....trying to cause twubble...10 spanks from me and margi!!!

http://uselessgraphics.com/moon.gif


grant    ;)
Title: Re: newest news in the usa
Post by TomM on May 20th, 2003, 3:18pm

on 05/20/03 at 14:40:47, Margi wrote:
Just like the subject of food triggers....these guys are gonna get hit no matter what they eat or drink, if they are in cycle.  And they're not going to get hit, when they're out of cycle.
That is exactly how my body works. I will avoid some known triggers for me, but then I say "WTF? I'm going to get hit sometime anyway"  and indulge. You gotta live life.  :)

And yes, I feel bad for the Chronics because I'm Episodic.  :'(

TomM
Title: Re: newest news in the usa
Post by oringkid on May 20th, 2003, 10:21pm
Excellent posts Margi!  Being episodic is like having a reoccuring nightmare, but is it better to have a reoccuring nightmare or to stay in the nightmare without waking up?  I truly don't know.  I know, right now, keeping in mind that I have only my own experience, which is episodic, to draw from, that I would not want to be chronic.
When I think of going through what I go through every day of every year instead of the 3 to 5 months that I do, I truly don't know if I could stand it.

TomM, my sentiments exactly, it's going to hit whether I do this or that or not so why let it rule me?

Atwitsend, thank you for sharing with us, I will also be interested in your results as well as your thoughts and feelings on this procedure!

Sherry
Title: Re: newest news in the usa
Post by Callico_Kid on May 20th, 2003, 11:00pm
Tom,

In going back and forth with Cathy and Margi no one noticed where your distrust with the surgery lies.  You are thinking the surgery is on the optic nerve, when actually it is on the occipital nerve,which if my limited understanding is correct is the nerve from which the trigimenal nerve branches off.  I too have been watching to see if the surgery is really successful before I attempt to undergo it.  All of the drugs we take for this malady don't do anything to go to the source of the problem which is neurological.  That is why I think there may be promise to this procedure.  If it is not something that is successful it can be reversed simply by removing the stimulaters and thebattery implant.

jc
Title: Re: newest news in the usa
Post by TomM on May 21st, 2003, 8:38am
Thanx to Margi and Cathy for keeping me honest and nudging me to be more explicit in my post.

And thanx to JC for the explanation. I was misinformed.

Tom


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