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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Deep Nerve Stem Removal
        
(Message started by: cah on Mar 22^nd, 2004, 4:38pm)

Title: Deep Nerve Stem Removal
Post by cah on Mar 22^nd, 2004, 4:38pm

Hi This is my first post. I have been cronic since Nov of 2001, only been diagnosed since March of 2003. Currently I am taking Inderal 60 mg 1x a day, Vioxx 25mg 1x a day Neurontin 600mg 3x a day and Topamax 250mg at night. and as an abortive O2, Imatix, and Frova. RIGHT now I am in the Middle of a NERVE BLOCK.
Which to me has become a life saver, It lasts 5 weeks 4 days, but I get 2 1/2 to 3 weeks of normal life, the first week is the up and the last week is the down, but i'll take it. I am seriously thinking of the DEEP NERVE STEM REMOVAL procedure. Because every time I come out of the nerve block the CH are worse than before, and the O2 takes longer, and longer to work. Last time the O2 didnt even work in between blocks. I have been eating the Imatrex like they are candy, My stock pile is running low. So any input on the Nerve Removal Please.

Cindy

Title: Re: Deep Nerve Stem Removal
Post by Tiannia on Mar 22^nd, 2004, 4:45pm

Sorry dont have any info on the Removal, but I do understand about the clusters being worse after the Nerve blocks. But damn I wished mine lasted as long as yours, I have only gotten 3-4 days PF then I feel like hte beast comes back with a spiked f*ing club rather then the normal needle and base ball bat.

Make sure you get second and third opinions first. Anything that is permanant scares the hell out of me.

My mother got migrains and a doc tolked her into cutting the nerves at the back of her neck, this was back in the 60's. Her headaches actually got worse after wards and can not feel the entire side of her head. She can hit her head hard enough to knock herself out and wake up not realizing what she has done.

Good Luck but be careful.

PF Wishes to you,
Tia

Title: Re: Deep Nerve Stem Removal
Post by t_h_b on Mar 22^nd, 2004, 6:11pm

Be sure you have exhausted EVERY possible medication and treatment before you do anything irreversible. You could come out worse off than before, with worse headaches or the same headaches plus side effects of the surgery.

Have you tried verapamil, melatonin, psilocybin, nasal/injectable Imitrex, all the other triptans, verapamil PLUS lithium, etc.? There may be dozens of other possibilities for both preventatives and abortives, especially if you have only been diagnosed for a year.

Any good physician exhausts conservative treatment before proposing surgery.

These damned things are frustrating but think twice before permanent surgery that may or may not work.

Title: Re: Deep Nerve Stem Removal
Post by cah on Mar 22^nd, 2004, 7:33pm

Now I have been told that if I get the Nerve Stem cut that it would grow back after a year or two but at least it would be a year or two of relief.

I was on Lithium but on Lithium I was one constant headache. I have tried Melitonin no success, the rest I have not. I have told my Dr. that we do need to get agressive, because I do have a high tolerance to meds.

Thanks

Title: Re: Deep Nerve Stem Removal
Post by jonny on Mar 22^nd, 2004, 7:38pm

Add some Verapamil to the Lithium....Cant hurt to try.

Ive been chronic for nearly 30 years and that combo stops 90% of all headaches from even showing up.....Ive been taking it for well over ten years.

Cant hurt to try it

.................................jonny

Title: Re: Deep Nerve Stem Removal
Post by cah on Mar 22^nd, 2004, 7:45pm

Do you mean just the two meds and stop all others.?

Title: Re: Deep Nerve Stem Removal
Post by miapet on Mar 22^nd, 2004, 7:45pm

I can only agree with everyone else . . .exhaust everything else first . . . .more than one 'new surgery' that will 'fix it' hasn't fixed it . . .and people have been left the worse for it . . .be careful . ..
*positive energy and light*

Title: Re: Deep Nerve Stem Removal
Post by UN_SOLVED on Mar 22^nd, 2004, 7:47pm

on 03/22/04 at 19:33:27, cah wrote:

Now I have been told that if I get the Nerve Stem cut that it would grow back after a year or two but at least it would be a year or two of relief.

Thanks

No doctor could actually say that this WILL work for sure. If it was a SURE thing, we'd be lined up for it...it would be a (temp) cure. There is NO cure (yet)...only things we try.
I'd be thinking of something a little less invasive. Surely you haven't tried everything. There are alot of different meds and combos to try. Try them.
Unsolved

Title: Re: Deep Nerve Stem Removal
Post by jonny on Mar 22^nd, 2004, 7:52pm

on 03/22/04 at 19:45:13, cah wrote:

Do you mean just the two meds and stop all others.?

I take Lith and Verap everyday, if a HA breaks through I have Zomig, but I can usually kill the HA with 02.

Like I said, 90% never show up.....Talk with your Doc.

....................................jonny

Title: Re: Deep Nerve Stem Removal
Post by cah on Mar 22^nd, 2004, 8:01pm

Thanks All this is the firt time I ever talked to anyone else who has CH.

Cindy