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        Cluster Headache Help and Support >> Cluster Headache Specific >> DBS surgery for CH/CPH headache
        
(Message started by: sgarner on Jun 29^th, 2007, 1:44am)

Title: DBS surgery for CH/CPH headache
Post by sgarner on Jun 29^th, 2007, 1:44am

http://dbs4headaches.blogspot.com/2007/06/dbs-surgery-for-chcph-headache.html

Title: Re: DBS surgery for CH/CPH headache
Post by George_J on Jun 29^th, 2007, 1:55am

Sinusbusters and now DBS?

Hm.

You bored or something?

Sheesh.

Title: Re: DBS surgery for CH/CPH headache
Post by Klusterkopf on Jun 29^th, 2007, 3:02am

I am glad that the procedure worked for you. How many volts do you have going to the implant? What type of device was implanted?

Title: Re: DBS surgery for CH/CPH headache
Post by clusterwife on Jul 17^th, 2007, 10:57am

Wow.....wow, your story sounds exactly,almost, like Kevins. He had TN surgery over 3 years ago. His nerves were killed on his left side. He still experiences the headaches daily on his numb side. I know, sounds way out there. His suffering was way out there too. But, in all, he is a lot happier and life with him is more bearable. Hope your DBS continues to be a success, Leah.
P.S. please do your homework, these kinds of surguries are to be considered as last resorts. They are invasive and permanment. Ask the question to many different doctors and patients. Leah.

Title: Re: DBS surgery for CH/CPH headache
Post by thebbz on Jul 17^th, 2007, 4:57pm

Quote:

until I had the deep brain stimulator implant surgery this
past November2, 2007.

[smiley=huh.gif]

Hasn't happened yet.
I can honestly say due to the death rate, "It'll probably be the last thing I would ever do".
Be careful and do your homework before considering listening even to the doctors.
all the best
jb

Title: Re: DBS surgery for CH/CPH headache
Post by Patrick_A on Jul 17^th, 2007, 5:04pm

Nope, Not me!

Title: Re: DBS surgery for CH/CPH headache
Post by UN solved on Jul 23^rd, 2007, 9:21pm

I believe that whole blog is BS ! CH/CPH ? You suffered for only 21 months ? You were hospitalized once for 5 days ? They picked you... out of all the others who have suffered just as much, for a much longer period of time ?

I don't buy any of it ! IT"S BS I TELL YA !!

UNsolved

Title: Re: DBS surgery for CH/CPH headache
Post by chewy on Jul 24^th, 2007, 3:44pm

A 2 troll thread!

Say it 3 times fast.

Title: Re: DBS surgery for CH/CPH headache
Post by Sandy_C on Jul 24^th, 2007, 4:08pm

TO ALL NEWBIES:

Please understand that we are periodically invaded by "trolls", who promote unsound, unproven, and unsafe "cures" for cluster headaches. This poster may be one of them.

Before taking anything this poster has said as verbatim, please, please research this site, the OUCH site (button to your left), and any other sites of your choosing, and then make an "informed decision" as to what treatment may be best for you.

We are not doctors on this site. We do not prescribe any medications or methods for combatting the pain of CH. All we can offer you is combined experience as to what has helped us, what has not helped us, and advice to consult with a knowledgeable physician.

Sandy

Title: Re: DBS surgery for CH/CPH headache
Post by Jill on Jul 26^th, 2007, 9:04pm

I wasnt going to post on this but I have read that blog twice and it really makes no sense to me.

My neurologist is trying to push me into seeing Dr. Dodick in Arizona to have the DBS surgery done. I have been chronic for five years now and they are just now thinking of this because they have no other ideas.

I, however, am hesitant and dont want to get it done. The risk is great since it is invasive and it is permanent. What if it doesnt work?

Also, I am curious that if was done than where? From what I have learned only Dr. Goadsby and Dr. Dodick perform the surgery and it hasnt been done on many people.

And, furthermore, why would the do this major surgery on someone who has been suffering for just twenty one months. I know that that is a long time, one day is a long time, but that is not an adequate amount of time to have all treatments exhausted. You figure each medication takes atleast a couple of weeks to fully take effect and longer if you have to increase it gradually. That alone makes me wonder...

One other thing, there are two other stimulators to try before anything permanent...

Anyways, I think that this surgery is a definite last resort and I know that I dont have many options but that is one thing that I have a bad feeling about.

Sorry that this is so long but this really makes no sense what so ever. If this procedure was actually done on this person than I am glad that it was successful. I would be curious to know how they managed to get it done so quickly.

Okay, that is enough.

Jill

Title: Re: DBS surgery for CH/CPH headache
Post by UN solved on Jul 27^th, 2007, 3:20am

I was told 'informally' by both Dr. Todd Rozen from MHNI and by Dr. Joseph Seipel from NeuroCare of Southern Indiana ... that one possible consequense from a failed DBS procedure could be a much worse condition resulting in a 24/7 non-stop cluster attack :o

Anyone considering this who possible has a chance at trying it should find out ALL the facts and possible outcomes and side effects.

Besides Prof Goadsby, Dr. Saper & Dr. Rozen, and Dr. Black would be good sources of correct information. Dr. Todd Rozen seems to know alot about it and is in contact with these doctors that are doing it. He could provide accurate result rates & chances, along with other technical info.

UNsolved
UNsolved

Title: Re: DBS surgery for CH/CPH headache
Post by chewy on Jul 27^th, 2007, 6:01pm

One patient I know of experianced that non stop cluster to the point they had to induce a coma until they figured out what to do.

Title: Re: DBS surgery for CH/CPH headache
Post by JohnM on Jul 29^th, 2007, 5:08am

As far as I am concerned it is not even a "last resort".

DON'T DO IT - EVER.

Is the famous Dr Goadsby actually doing this? Shame on him!

Title: Re: DBS surgery for CH/CPH headache
Post by Klusterkopf on Jul 29^th, 2007, 7:11am

You do not know the personal situations of those who had the operation done. The doctors who performed the surgeries are not a bunch of mad scientists; the screening procedures, in Germany and I am sure in the other countries where the surgery is done, are very strict. One does not get the operation just because he or she wants it. It is a last resort procedure and the decision to have it done is not made lightly, either by the patients or the doctors. Progress is made in medicine by those who take a risk. I do not understand how a rational person can criticize the choices made by desperately ill people. We cannot walk a mile in some else's shoes. People who suffer from CH are criticized enough by the general public who know little or nothing about this terrible illness; it is a shame that those who chose a different path to try to get some relief from the horrible pain are criticized by their fellow sufferers.

Title: Re: DBS surgery for CH/CPH headache
Post by chewy on Jul 29^th, 2007, 9:08am

For the benefit of new people Klusterkopf is our resident troll. He serves no purpose except to confuse, obfuscate and distress posters while providing a wealth of misinformation of his own.

The best response to him is no response. All we do is inform people as best we can that his posts are unsound.

Title: Re: DBS surgery for CH/CPH headache
Post by LeLimey on Jul 29^th, 2007, 9:42am

PROFESSOR Goadsby is NOT doing the DBS procedure. It has NOT been done in England.

I hope this clarifies the point. I do believe however that Unsolveds point was that Prof Goadsby would be a better source of information rather than that he was practising it.

I'd also like to point out that PG is a NEUROLOGIST and not a NEUROSURGEON... maybe the trolls ought to check into THAT ::)

Jill if the information you have been given is truly that Dr Dodick and Prof Goadsby are the only ones to have done this op then I suggest you run very fast away from whatever doctors told you that as they obviously found what they know about DBS on the back of a packet of cornflakes.

Title: Re: DBS surgery for CH/CPH headache
Post by davyp on Jul 29^th, 2007, 9:51am

http://ganjataz.com/smileys/01-speech/images/dontfeedthetroll-shoottheminstead.gif

Title: Re: DBS surgery for CH/CPH headache
Post by Brewcrew on Jul 29^th, 2007, 9:56am

Here's the thing that fascinates me about our current resident troll. Remember when he first started posting here a number of weeks back? He claimed to be German, and that English was his second language. His posts were riddled with little English-language fuck-ups, things that would be considered normal to someone for whom it is a second language.

Now we can see that it was all a ruse and that Klusterkopf is truly a FUCKING FRAUD. Look at this post and tell me if this was written by someone whose primary language is German:

on 07/29/07 at 07:11:41, Klusterkopf wrote:

He sure seems to have learned a lot of higher level English in just a few short weeks.

FRAUD!

Title: Re: DBS surgery for CH/CPH headache
Post by rolo65 on Jul 29^th, 2007, 12:00pm

Ever seen the Travelocity commercial where the troll plugs a 120VAC device into a 220VAC European electrical socket? Time to call Travelocity for help on this thread! [smiley=yikes.gif]

Title: Re: DBS surgery for CH/CPH headache
Post by docblondie on Jul 29^th, 2007, 11:43pm

I am fairly new to posting on this site. I come here for support when the "battle fatigue" hits. I was excited to read about the DBS info. I am a chronic sufferer and need an alternative from the 6 meds. I am on. My organs will not tolerate this much longer.
I came here looking for support. After reading your responses, I am signing off feeling very isolated, disappointed and sad- worse than when I signed on.
I don't see support here. I see judgement, hate, viscous name calling (trolls) and senseless vulgarity. Does this make you feel good about yourselves, I wonder?
Wouldn't it be easier if you could just disagree and go about your day without discouraging others? There's a way to say- "no thanks, not for me" without wounding others.
Sad in Orlando,
Chris

Title: Re: DBS surgery for CH/CPH headache
Post by rolo65 on Jul 30^th, 2007, 1:15am

on 07/29/07 at 23:43:31, docblondie wrote:

I came here looking for support. After reading your responses, I am signing off feeling very isolated, disappointed and sad- worse than when I signed on.
I don't see support here. I see judgement, hate, viscous name calling (trolls) and senseless vulgarity. Does this make you feel good about yourselves, I wonder?

Chris

Docblondie, I and many of us are just venting our frustration at the thought of getting a pace maker wired into our head. I am interested in the DBS and its results if true.

You’ll just have to accept the fact that there will be venting, it’s kind of like trying to drag your 82 yr old grandmother over to the computer when she just figured out how to use the TV remote. Some people need time to acclimate to new ideas and I certainly won’t be the first in line for such a drastic procedure.

And then you’ll also have to realize that most of us are men and we may hit harder than we intend to some times. It doesn’t mean we don’t have a soft side just because we don’t always show it.

Soooo please don’t be discouraged by our comments, we want you here so stick around!

PFD&N-Rolo..

Title: Re: DBS surgery for CH/CPH headache
Post by JohnM on Jul 30^th, 2007, 3:46am

ok - my apologies to Dr Goadby if he is not doing this operation. (or is he recommending it?).

And for our German friend I am not walking in someone else shoes. I suffered from this affliction in one way or another for the best part of my 55 years so I have plenty of experience. I have been at the end of my rope lots of times.

I sought a cure when I thought there was no cure available. I never found any relief at all until imigran injections becam available.

In 2001 I discovered how to keep myself relatively CH free using a regular Detox diet, and my life has been so much better ever since.

I do understand to some degree how the chronic sufferers must feel, but surgery is not the answer. There has to be another option. Just keep looking and keep an open mind to more natural solutions of which several have been shown to work well for some.

John

Title: Re: DBS surgery for CH/CPH headache
Post by LeLimey on Jul 30^th, 2007, 4:13am

on 07/29/07 at 23:43:31, docblondie wrote:

Doc Blomdoe there is a way to say "No thanks - not for me" but if you had read further or into the history of those posting here you would know why the reaction they got was as it was.

What meds are you on? It sounds as though there may be conflicts there alone as we have many, many chronic sufferers here of whom I am one myself who have never been prescribed so many. The most I can think of is three with a combination of two prevents and one abortive. Quite frankly I'd be questioning YOUR doctors judgement in slamming so much medication into you. It sounds more like kill than cure.

We would be more than happy to help you with any advice, suggestions or support that we can. You will not find a more caring group of sufferers and supporters on the net and I'm very proud of this family and we do defend each other AND PROTECT DESPERATE NEW READERS to the death.

Peoeple we call "trolls" have a history of abusing this site with false information, claims of quack medicine working and so on and we see it as our DUTY to inform desperate, scared and vulnerable sufferers that an end to their suffering isn't in sight - just an end to their savings.

Let us see if we can help you at all

Helen

John - I heard PG speak about DBS at the OUCH UK conference and I have to say he isn't promoting it however he IS trying the ONSI procedure but that at least is "non-invasive" after a fashion. Yet again though, results are far too patchy to consider it for me and of the sufferers I know who have had it done (I know them personally) ALL are still on preventatives and abortives... sort of negates it for my own personal choice I'm afraid!!

Title: Re: DBS surgery for CH/CPH headache
Post by Brewcrew on Jul 30^th, 2007, 7:51am

on 07/30/07 at 04:13:49, LeLimey wrote:

Peoeple we call "trolls" have a history of abusing this site with false information, claims of quack medicine working and so on and we see it as our DUTY to inform desperate, scared and vulnerable sufferers that an end to their suffering isn't in sight - just an end to their savings.

Docblondie,

If you only knew the half of this statement. Do stick around and you will learn, I'm sure. Nobody's here to mess with true, legitimate sufferers except the trolls.

Title: Re: DBS surgery for CH/CPH headache
Post by docblondie on Jul 30^th, 2007, 8:40am

Helen and others who have responded,
thanks for the encouragement to stick around.
Helen...you asked what meds. I was on and questioned my Doctors- a very quick judgement on your part.
I see from your message that you have encountered people prior to this who have come up with whacky solutions- I assure you, I am not one of these, nor are my doctors. I am under the treatment/care of Dr. Maria Carmen-Wilson at Tampa General Hospital Pain Management and Neuology Dept. She along with Joel Saper, MD are known to be the best US doctors for Cluster Headaches.
I am one of the worst cases of Chronic CH's.
I was episodic from 1989 until 2002. I would have 11 months remission, 6 months headaches- like clockwork. The only preventative the I responded to was high doses (80mgs) of prednisone. I would stay on this and taper down to 20mgs. over 1 month then start all over again once the headaches came back- a few days after being off pred. Imitrex injections would abort headaches and O2 would also work. Other than those two, I found little relief in everything my neurologist tried- and I have tried them all- from Lithium to Medrol to indocin, antidepressants, verapammil, reglan, ergotamine, Depakote, combinations of these and many more...too many to list.
When I went chronic in '02 i stayed on prednisone while my neurologist in Orlando and I tried every combination to think of. Only prednisone worked. I was desperate- it was becoming more difficult tolerating the high doses of pred. Finally got in to see Dr. Wilson and my meds. now are;
400mg Topamax
320mgs Verapamil
40mgs Prozac
Bellergal S tabs which has the combination of ergotamine, phenobarbitol and beladonna.
25mgs Serequel
25 mgs antihistamine
It took 4 years of searching for medications- other than pred. (& after I went chronic) to get relief with this combination.
I have been headache free now for almost a year.
At times I have had a breakthrough headache where imitrex injs. have worked. Have to be careful with the timing- not too close to the ergot.
If I come off any of these meds, within a few days, the headaches return. We have tried coming off- tapering slowly one at a time, combinations, increasing one and coming down on the other- this particular combo works.
If given the chance, I would consider the surgery- of course after much research. I have to have a plan B in place in case these meds. stop working or my kidneys- liver begin to give out from trying to process all this. I have lost my hearing from too much pred. (Calcium build up) I wear hearing aids...I am losing my vision- from the topamax...So do I stay on these and go blind and deaf or try the surgery? Yes, I may lose my life- but it's not a quality life right now, I can take the risk.
Tough choices.
Chris

Title: Re: DBS surgery for CH/CPH headache
Post by Jill on Jul 30^th, 2007, 9:34am

Quote:

Jill if the information you have been given is truly that Dr Dodick and Prof Goadsby are the only ones to have done this op then I suggest you run very fast away from whatever doctors told you that as they obviously found what they know about DBS on the back of a packet of cornflakes.

So Dr. Goadsby is not only not doing the surgery but he is also against it? That is very interesting and good to know. I am going to have to question my doctors information and also his intentions - I feel like more of a guinea pig than I do a patient some days.

As far as critizing - just for the record, I was not trying to do that. It just didnt seem plausible that this person could have had procedure done, especially if it is supposed to be so last resort.

I dont think that it is fair to say that people here are being unjust or rude - everyone is just looking out for everyone else. We all have the cluster headaches, come are chronic and some are episodic but we all have the pain.

This is very risky surgery and not to be looked at lightly. Like I said before, I have been chronic for five years now and I average ten to twelve attacks a day right now. But I am so hesitant on doing it, especially if it is expermental. There has to be something else out there and I am going to find it.

Sorry for rambling and thanks for the information.

Jill

Title: Re: DBS surgery for CH/CPH headache
Post by Katherinecm on Aug 15^th, 2007, 2:00pm

Docblondie,

Hi-- a while back my neuro suggested that I use narcotics for a few years until they refine these surgeries a bit more. They aren't the be-all and end all, no matter how much people hype. We all wish there was some simple surgical cure, but there just isn't. If there was, we would have topics like "how to prepare for surgery" on this board instead of the bizarre topics and jokes we do have.

I don't know much about other programs, most of my info comes from mayo clinic (where I have a cousin in medical school). Forgive me as it's been a while since I researched this, so I may get a number here or there wrong. From what I can remember, out of an initial 12 patients, 1 died of hemorrhaging during surgery. And they define "success" as in a reduction of either the number in or the severity of hits- -these people are still heavily medicated and unable to work. Because any major brain trauma (car accident, anyone?) is known to reduce number/and or/severity of hits for a short time, it is no surprise that major brain surgery works on at least a limited amount. Long term results seem to be questionable at best.

Also, until recently these types of stimulators were only implanted in the elderly, so no one has any idea what the long term side effects will be on someone who has the implant in their 20's, for example. People worry about the magnetic radiation coming from cell phones and the electric fields around power lines--who knows what this type of constant stimulation will do long term? It's so risky that unless one is at the point of being constantly suicidal (not just during hits), it hardly seems worth it. At least not yet.

Be sure to learn all about these procedures yourself before getting so excited about it that you find yourself devastated when there is no cure after all... if there is one thing we have discovered around here, it is that fear and loss of hope are much worse than pain. Which is why we are extremely wary of scam artists who confuse new people and imply there is a magic cure- it's too dangerous to allow scam artists with something so painful that many of us have lost friends to this condition. It does take a while to learn which names have stuck around a while and who is truly helpful, but don't give up on us just yet. You'll find that there are people here who understand what you are going through unlike anyone else, and they'll help you however you need, whether it's listening to you complain, offering suggestions for meds you may not have tried yet, or telling you to buck up if what you really need is an attitude adjustment. Like anyone who struggles with pain, sometimes we have short tempers. Ignore it, fight through it, and you might find closer friendships here than any you have ever known.

Katy

(modified for typo)

Title: Re: DBS surgery for CH/CPH headache
Post by Brewcrew on Aug 15^th, 2007, 4:44pm

on 08/15/07 at 14:00:17, Katherinecm wrote:

...instead of the bizarre topics and jokes we do have.

Hey, speak for yourself, there, Katy! ;)