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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> TRIGINAL NERVE STIM. WORKING GREAT revisited
        
(Message started by: zuesthedog on May 3^rd, 2006, 11:24am)

Title: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by zuesthedog on May 3^rd, 2006, 11:24am

Well I thought I should bring this subject back up ,because of the great sucess I,ve had so far. Its been three month since an attack. After thirty years of episodic then chronic thats a win for me. I made the mistake of using the word cure in my last post,and got hell from all sides. I am afraid that the negative replys may have turn some people that could be helped off from this idea. I think the biggest point that needs to be made is that this is not brain surgery. Its a pretty simple outpatient procedure,that is totally reversible.Just imagine what its like not to suffer every night,and not have to take gobs of meds. I did and now I dont. If there are any question just asks I will try to help anyway I can. :) :) :)

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by fireball on May 3^rd, 2006, 6:32pm

I was just thinking today that I needed to IM you to find out how you have been doing.
We talked w/ my husband's neuro in Pittsburgh about it and were told they couldn't recommend it b/c they had never heard of it being done before, and therefore didn't know of anyone to do it. So if we want to explore that route, we have to do the locating. I still have all of your information from before.
Please keep me posted from time-to-time.
I have a feeling our insurance will be a huge issue, and w/o that, it isn't feasible.
Anyway, I'm glad that this is working for you. My husband is an impossible to treat chronic, and has been suffering for 8 years. I can't imagine 30.

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by Garys_Girl on May 4^th, 2006, 12:48pm

Apparently I'm not very good at searching, because I haven't been able to find your previous posts about this.

What is it?

Thanks,

Laurie

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by zuesthedog on May 4^th, 2006, 6:01pm

Hello Fireball and Gary,girl Well that a damn shame about your neuro.Maybe your guy could call my guy,then he could find out how easy this procedure. As far as I know I,am the first and only to have this done. I f nothing eles Pitt is not that far away. It was done as outpatient. One day with only one follow up visit. As far as insurance my neuro,s sec. worked wonders not only did they pay for this surgery they paid for the oxcipital stim and also paid to have it taken out once it started to migrate. If you want I could give you phone number so I could help in anyway . now as far as my first post I believe its on page 5 labled The Road To A Cure. I wish both of you good luck, If you need anything just ask me. ;)

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by Garys_Girl on May 4^th, 2006, 6:20pm

zeus -

Thanks for that info. I'm REALLY glad it's working for you! It seems there's a way to go with electrical stimulation that doesn't require implant. Maybe we'll look into that first.

That was really helpful, thanks.

Laurie

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by EstieSA on May 5^th, 2006, 7:35am

on 05/04/06 at 12:48:59, Garys_Girl wrote:

Apparently I'm not very good at searching, because I haven't been able to find your previous posts about this.

What is it?

Thanks,

Laurie

DITTO!

Please tell me more ???

Tx

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by brewcrew on May 5^th, 2006, 7:49am

Just for future reference, anytime you talk about a "cure," you better have an "M.D." after your name. Otherwise, the hell you caught was completely justified.

Having said that, where are those other posts. I'd like to read them.

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by fireball on May 5^th, 2006, 10:52am

As of a minute ago, the posts are under "Medications, Treatments, Therapies", on page 5, 4th post down titled "Road to a Cure".

I think he got the picture that there is no cure. But I'm sure he was doing back-flips going from 30 years chronic to totally PF!!!

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by zuesthedog on May 5^th, 2006, 1:38pm

For those who would like more detail. I,ll try sum it up as short as I can. Suufered since I was 13 now 42. Wasnt diag. untill I was 28ish. Turn chronic about 30-31. Tried easily thirty or more diff. meds. Seen pain manegment spec. E.N.T.s .3 neuros. Tried Botox, shrooms , pot, And a ton of narc. Some things would help a little, Heard about ocipital stim. So I found a Dr. localy that would do it . That stay in for about a year before it started to migrate and came out of the back of my head. Next I asked this dr. if he could do the gamma knife, he suggested tring to put stim. there instead . said he had never did it before but would try. Its working great. The stim. is made by medtronics, Its placed right below the skin above the eyebrow. A wire runs over the top of my head, down my neck to a battery pack in my chest . You cant even see the stim. ,the small portion of wire looks like a small vien. This stim. is totally adjustable, you can change freq. and amperage, which is great I am sure what works for one may not work for all, . you can set it to whats comfortable. BEST of all this procedure is totally reversible with no damage to the nerve. When the stim. is running a area behind the eye, and part of the forehead goes numb. At first I was turning it on to abort. Now i am running it for a hour a night, before bed and I havent had to fight an attack in months. I will admit I scared to go a night with out running it that the beast would return. So I geuss Iam not cured but I sure am happy ;) . If there are any more quest. please ask. Thank you and PF DAYS to all soon.

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by SophiaK on May 7^th, 2006, 3:46pm

I wonder how this would affect someone with a pacemaker or A fib. In other words would it cause problems with either one?

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by Jonny on May 7^th, 2006, 5:49pm

on 05/05/06 at 13:38:37, zuesthedog wrote:

So I found a Dr. localy that would do it . That stay in for about a year before it started to migrate and came out of the back of my head.Next I asked this dr. if he could do the gamma knife, he suggested tring to put stim. there instead . said he had never did it before but would try.

I guess surgery is guess work now?

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by zuesthedog on May 7^th, 2006, 5:56pm

on 05/07/06 at 15:46:13, SophiaK wrote:

I wonder how this would affect someone with a pacemaker or A fib. In other words would it cause problems with either one?

I dont think so ,we discussed poss two stims at once and was told they would not interfere with each other. all the the same thats a quest. that a Dr. should answere.

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by zuesthedog on May 7^th, 2006, 6:06pm

on 05/07/06 at 17:49:12, Jonny wrote:

[/size]

I guess surgery is guess work now?

Quick question Do You Even suffer from this unholy hell> I read your comments before and you seem to to nothing but try to shoot every poss helpful option down . I dealt with this missery for dam close to 30 years and was willing to try anything. So yes if it was guess work I am glad I found A surgon willing to guess. Dont you get it after 30 years [at least 10 chronic 3-4 a night for TEN years] IAM PAIN FREE . Now I am just trying to help other real suffers escape this hell . If you need the help I will do what ever it takes to help you ,but if you dont why ? make it so diffucult to help others.

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by chewy on May 7^th, 2006, 6:27pm

Quote:

Do You Even suffer from this unholy hell>

Well. Answer the man. Do you?

ROFLMMFAO!

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by LeLimey on May 7^th, 2006, 6:55pm

Zuest, Jonny is a sufferer and like you a 30 year one.
He is looking out for every other sufferer on this site. As you well know.. people in desperate pain will try anything and we have had many, many unscrupulous trolls here trying to sell surgery before - the legendary "Dr" Ali for one ::)
For the record I neither doubt your success or the operation. I know people here in the UK who have had the ONSI and whilst some of them have had some measure of success none have been "cured".. that is to say none have had a cessation of their headaches.
No matter what country we are in and this is a world wide site, surgery for clusters is in it's infancy. Its very much trial and error. You have been outstandingly fortunate, you've had a very skilled surgeon.
Anyone considering this operation in any other part of the country or world needs to bear that in mind and hear both arguments, for and against.
My own point of view is surgery should always be the very last option. It is also that all info pertaining to CH should be available and I am glad you are posting.
Please don't be defensive if someone else states their opinion, its not directed at "you" but at another sufferers' chances in the lottery that is medicine today
Helen

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by zuesthedog on May 7^th, 2006, 7:38pm

Alright Ill chill abit. Dont mean to lose my cool., But its a little discouraging when you get negative comments while trying to help others. As far as other methods over surgery, I dont totally agree. At least in this case both Stims I had implanted I am not sure I would catogorize as surg. [I know it is, but its was so easy and they,re placed just under the skin]. Anyway if I had a choice over taking all the mood altering drugs I had taken in my search for relief or the simple implant surgery [knowing what i know now] I would choose the surgery. But anyway I thank you for your calming words and I applogize to Johnny for loosing my cool. :-X

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by LeLimey on May 8^th, 2006, 10:32am

Zuest, I have been speaking to one of the trustees of OUCH UK about your posts who has in turn spoken to Peter Goadsby, the UK's most eminent CH specialist. He is very interested in how your procedure is done as he has never heard of it being placed as you have said and would like to know more. Could you please IM me the name of your neuro and where he is so that Peter can contact him for further information?
Thanks for your help :)
Helen

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by Tom on May 9^th, 2006, 7:37pm

Found following links about the trigeminal stimulation, all procedures done for the TN ( zuesthedog apparently got a supraorbital electrode that's not mentioned yet in the reports found):

http://www.ohsu.edu/facialpain/tn-stimulation.shtml

http://www.stanfordhospital.com/clinicsmedServices/COE/neuro/chronicPain/trigeminalNeuralgia

http://facial-neuralgia.org/treatments/surgical/neurostimulation.html

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11935364&dopt=Abstract

http://www.medscape.com/viewarticle/473431

Thomas/Munich

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by Beastfodder on May 10^th, 2006, 10:45am

Zeus,

Got to say when I asked if you could get the Telly on it, it was meant in humour.

Anyway guaging from the way it's worked out for you I'm really pleased - no offence meant.

All the best

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by zuesthedog on May 10^th, 2006, 11:35am

Hey all thanks for the postive input especially the research info that Tom gave. The Dr. that did the procedure is George Mandybur and I believe he can be contacted at www.mayfieldclinic.com. Thanks to all again I honestly believe if we all work to gether we can beat down the beast Instead of it beating us down.

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by thebbz on May 12^th, 2006, 1:18am

ZTD,
Good you are still PF. I couldn't have that procedure, if my wife got a hold of the remote I would be a dead man. [smiley=laugh.gif]
Keep posting .. Do you take drugs with that? Or are you drug free?
all the best
jb

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by Jonny on May 12^th, 2006, 3:29pm

on 05/07/06 at 18:06:33, zuesthedog wrote:

Quick question Do You Even suffer from this unholy hell

Yeah, 31 years, 30 of them chronic.

Hope that answers your question.

Im glad your PF.

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by zuesthedog on May 12^th, 2006, 6:10pm

on 05/12/06 at 01:18:39, thebbz wrote:

regretfully yes> haveing to take metadone trying to wing off the narcotics they kept me on when things were real bad

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by unsolved1 on May 12^th, 2006, 8:14pm

For TN ?? Do you have clusters or TN ??

I was the first in the US to have a bi-lateral ONSI done by MHNI in MArch 04'. It didn't touch the attacks. It was total hell to say the least.

Glad you found something that has helped.

UNsolved

Title: Re: TRIGINAL NERVE STIM. WORKING GREAT revisited
Post by zuesthedog on May 13^th, 2006, 9:52pm

on 05/12/06 at 20:14:34, unsolved1 wrote:

For TN ?? Do you have clusters or TN ?? just chronic clusters

I was the first in the US to have a bi-lateral ONSI done by MHNI in MArch 04'. It didn't touch the attacks. It was total hell to say the least.

Glad you found something that has helped.

UNsolved

Just chronic cluster since I was 13