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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Surgery
        
(Message started by: RebekahD1 on Jul 25^th, 2002, 12:16pm)

Title: Surgery
Post by RebekahD1 on Jul 25^th, 2002, 12:16pm

Hi,

Anyone that has been chronic, daily/nightly for five plus years, every consider (or would you consider) surgery?

Title: Re: Surgery
Post by rick on Jul 25^th, 2002, 1:24pm

Rebekah,

The surgery I have heard in discussed here most often involves having your trigeminal nerve severed, and the feedback from those that have had it has not been positive. I have yet to hear of any surgery that actually works.

If you had questions about any specific surgery, try using the search function for the archives. Also, Ueli might be a good guy to talk to.

;DR

Title: Re: Surgery
Post by RebekahD1 on Jul 25^th, 2002, 1:32pm

Hi,

Thanks for the reply. Deadening this nerve is exactly what I'm talking about. How depressing to hear that feedback has not been positive! My brother is the sufferer, and nothing works. Nothing. He is going in patient for 3 days to receive extremely high doses of steroids, but his doctor is not very optimistic that it will break up his five year endless cycle. So, his nuero is already starting the process for the surgery. Yikes. If both of these options fail, I can honestly say I'm not sure how much longer he will be amoung us. I'll try to be in touch with Ueli. Thanks again for the info..

Title: Re: Surgery
Post by Ted on Jul 25^th, 2002, 1:40pm

you might want to have it investigated a bit more before the surgery. the not very good results are that it, at best, gives a brief painfree time and comes backafter a very short time. But then the side effects of a constant facial pain or numbness, along with part of the face becoming paralyzed are added to the clusters. And sometimes the attacks just decide to switch sides of the head as well. Look long and hard before he has his surgery.
Can you tell us what he's already tried as prophylactics and abortives?

Title: Re: Surgery
Post by rick on Jul 25^th, 2002, 1:49pm

Rebekah,

This treatment, although it may seem a bit radical on the surface, has provided me with relief recently:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1013709016

I am episodic, and treatment of chronics with this therapy has seen moderate success as far as I am aware, but the link is worth reading.

I am very sorry to hear of your brother's situation. Does he at least have a neuro that is experienced in treating clusters? You should encourage him to use this website for the support he will receive, it has helped me tremendously. And thank you for being an active supporter.

Peace,

-Rick

Title: Re: Surgery
Post by RebekahD1 on Jul 25^th, 2002, 1:53pm

Hi has tried many things, I'll try to remember. Here goes: Imitrex, verapamil, oxygen, diet, vitamins, steroids, lithium, anti seizure meds, pretty much everything listed under the meds section on this sight.

I'm also concerned because he has pretty significant depression and anxiety. He's also taking paxil and lorazepam. The lorazepam makes me particularly nervous. He currently is taking an old epilepsy drug (I apologize but the name is so long it escapes me) that he can only take 6 weeks on and 6 off because it's tough on the body. He says it's the best combo of meds he's been on in a while. Yet, he's desparate. His neuro is being pretty aggressive, which is a relief. His plan is to use the new med for 2 months (it has almost been two months), then to try the in-patient steroid treatment, then the surgery. Has anyone tried very high doses of steroids administered in the hospital? Given my brother's condition and history, his neuro is not optimistic.
He is at a point where he cannot work, and has been unable to do so since the winter.

Title: Re: Surgery
Post by BobG on Jul 25^th, 2002, 2:09pm

Here's some more post about surgery

Rodger Griffin (1-11-01, Stereotactic Radio Frequency Rhizotomy)

http://www.clusterheadaches.com/wwwboard/messages/74124.html

Margi (7-12-01) list of posts about NOT having surgery

http://www.clusterheadaches.com/wwwboard/messages/100398.html

describes Gamma Knife Radiosurgery

http://www.allsands.com/Misc1/gammakniferadi_uux_gn.htm

Title: Re: Surgery
Post by Svenn on Jul 26^th, 2002, 3:23am

My neuro say that its a bigger chance to get worse of an surgery then by medication

Svenn

Title: Re: Surgery
Post by Charlie on Jul 26^th, 2002, 5:41am

The consensus here has been that surgery is iffy at best and has been known to have some unpleasant side-effects.

Sadly, so far CH is one of those things we don't have an handle on and there is no easy answer.....Yet.

Charlie

Title: Re: Surgery
Post by soworried on Aug 31^st, 2002, 6:50pm

I would highly suggest occipital nerve decompression before you try to severe a part of the nerve. Let us know how it goes if your brother decides to go through with the surgery. Good Luck and God Bless. Your family are in our prayers.

Title: Re: Surgery
Post by gore2424 on Sep 8^th, 2002, 10:52pm

Hello
I had the trigeminal rhizotomy surgery done May 21,2002.Went into skull and cut the nerve completely and will never grow back its forever.Was cronic for over 18 months after being seasonial for 15 years.I went to Mayo Clinic in Rochester MN. to check on having the gamma knife procedure but they have not had very good luck with that procedure for clusters the nerve will repair its self in coming years.They will only do the trigeminal rhizotomy if the headache has NEVER been on both sides.I have adjusted to being numb on right side of my face hardest thing for me has been not biting the inside on my cheek while i eat.Fixed that by eating smaller bits and eating slower.Since eye is numb must be carefull to not get anything in it.I put lube drops in 4 times a day and also then check for any thing foriegn in the eye.I have had no headache since the surgery.I was only in hospital for 4 days.I have my life back.If you have anymore ?'s about the procedure I will answer them for you if i can.I dont get on here but once every two weeks but feel free to e-mail me if you need anymore help.gore2424@aol.com