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Peppermint
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New Stimulator Implant - Questions
« on: Oct 2nd, 2003, 11:12am » |
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Some of you may know my buddy who suffers from clusters (Oklahoma). He was on and off Prednisone for a long time, a full year went by, alternating months, or even a little as 3 weeks, from off Pred to On Pred. I know he's trying to get to another doc that is considered better than his current one, so at least there's some hope there....
Recently, he was benefitting from upping his dosage of Lithium to 900, with Verap at 360 and maxalts and 02 for abortives. Now it seems that he is heading back to whee he came from, as far as frequency of attacks, and is again, looking at the possibility of surgery. Specifically, this would be the implants(stereotactic - sp?) that Dr. Bigal discussed at the convention.
Cat, I've requested info on the presentation on this before privately, from Lori and the doc. I understand that they are extremely busy, possibly too much to answer person by person, but if you are in touch with them, would it be possible to obtain more information on the possibilities of candidates for that procedure ?? I understand that this is only being done in Europe by the Italians, but right now, every possibility is being considered. Of course, if it is being done somewhere in the states as a trial, it would be more readily feasible.
He asked me to help him look into this specifically, as the onslaught is rapidly increasing. It feels like that running wildly out of rope thing again, and this is the only way I can help.
If not you, somebody, help, Please ???
Patty
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Mastifflvr28
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Re: New Stimulator Implant - Questions
« Reply #1 on: Oct 2nd, 2003, 10:57pm » |
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Hey Pepp,
Have you checked with Unsolved Equation?
He had a "microwave" technique done (sorry, don't know the name) that sounded kind of promising. Maybe he can help you out with doctors and clinics.
Best of luck to Oklahoma.
Mast
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Mastifflvr28 (aka Michelle A.)
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UnsolvedEquation
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Re: New Stimulator Implant - Questions
« Reply #2 on: Oct 3rd, 2003, 4:14am » |
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Peppermint ... check your IM for a message from me. Hope I can help.
~ UnsolvedEquation~
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Peppermint
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Re: New Stimulator Implant - Questions
« Reply #3 on: Oct 3rd, 2003, 8:56am » |
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Thank you Mast, UE, vig, Lee - I really appreciate any response I get.
Thanks for the pms and emails too people.
Interesting - Lee put this article up in another thread, didn't see much response to it, but this procedure is exactly what I was talking about (I'm emailing him today with this Lee, thanks).
http://www.docguide.com/news/content.nsf/news/8525697700573E1885256DAB00 477193?OpenDocument&c=Migraine&count=10
I wonder where they get their test/trial subjects?
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When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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hdbngr
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Re: New Stimulator Implant - Questions
« Reply #4 on: Oct 6th, 2003, 3:37pm » |
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Peppermint:
They are also doing occipital and spinal cord implants in the U.S. for treatment of CH. The technology has been around for at least 20 years, but they have only recently started using it to address CH. In the past, these implants were done to treat severe back pain and injuries, sciatica, and cancer pain. It uses electricity to stimulate the selected nerves, sending a constant "white noise" along those nerves. If the nerves are busy doing this, they can't send pain signals.
There are usually two leads run subderamally, then they are attached to either an internal battery (about the size of a small computer mouse) or an external power source. It might be an option for your friend. Dr. Richard Ferro, of Multidisciplinary Pain Management Services in Lansing, Michigan, is one who is qualified to do it. The procedure will only be done if all other options have been tried and ruled out. Sounds like your Oklahoma friend may have reached this point...
The Occipital implant is several steps up from the "microwave" rfg procedure mentioned by Unsolved, but several steps down from the deep brain stimulator procedure mentioned in your hyperlink, which requires brain surgery and an implant near the hypolthalmus. The deep brain surgery has apparently had great success with the treatment of chronic CH, but it is very, very risky.
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kissmyglass
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Re: New Stimulator Implant - Questions
« Reply #5 on: Oct 6th, 2003, 7:08pm » |
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Pepperoo.....If ya find out where they get their test subject...sign me up too.
Kev
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UnsolvedEquation
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Re: New Stimulator Implant - Questions
« Reply #7 on: Oct 6th, 2003, 11:45pm » |
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PS...The next new stimulator is produced by Advanced Bionics > http://www.advancedbionics.com/ ... but their website doesn't go into detail about it since it's just now ready for testing. Don't worry ~ I'll test it out first lol
"The rapid advancement of technology and medicine has forged a new medium, electrical stimulation, for treatment of disabling conditions including deafness, blindness, tremor and spasticity, urinary incontinence, chronic pain, and functional restoration of paralyzed limbs.
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Mastifflvr28
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Re: New Stimulator Implant - Questions
« Reply #8 on: Oct 7th, 2003, 12:25am » |
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I'm so nosy...Ok, so unsolved, you are still going to go ahead with the bionics thing? So, the microwaving you would consider NOT a success? Curious
Actually, I'm not really that nosy, just like to keep up on the family 
Mast
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Mastifflvr28 (aka Michelle A.)
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Re: New Stimulator Implant - Questions
« Reply #9 on: Oct 7th, 2003, 11:44am » |
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The RF has cut down ALOT on the severe headaches...now I feel like I'm in a constant shadow. My head hurts a little most of the day and night. I have only had 2 severe headaches in 2 weeks. I'm still up for the next step. Feeling headachy all day sux 2 
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hdbngr
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Re: New Stimulator Implant - Questions
« Reply #11 on: Oct 8th, 2003, 9:00am » |
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I had the occipital implant done last week. Yeah! After the trial procedure, they thought they would try to add an additional lead and reach more of the pain in the front, stimulating both the major and minor occipital nerves at once.
While this did provide better coverage, the power requirements needed to maintain adequate stimulation were high, so they went ahead and made a pocket on my side where an internal battery is usually placed, but then left the lead end exposed so that it could be attached to an external power source.
From what was explained to me, the internal batteries usually last about 5 years, then you have to replace them. However, with two leads and high frequencies, the internal battery might drain as quickly as 4 weeks. I came home with an external power battery and programmer which I wear in a fanny pack around my waist. The batteries are rechargable, so I just swap out the clip each time it is depleted. I go back to the office on Friday to discuss final options and have stitches removed. Wednesday of next week they will do one more surgery, either adding the internal battery, or finalizing the set-up for the external power source.
So far, I have significant pain relief on the back, left-hand side of the head, up to the top of the ear. We haven't yet been able to reach the left eye, unfortunately, but it was explained to me that once implanted, there will need to be some fine-tuning over the next few weeks.
Any relief is good relief. I'll keep you posted.
V
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Mastifflvr28
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Re: New Stimulator Implant - Questions
« Reply #12 on: Oct 8th, 2003, 9:04am » |
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WOW!!
Please keep us updated.
I'm reading what you typed and keep pictureing your head hooked up to a car battery!! Or jumper cables hooked up to your head, or something!
Was any of all these procedure scary or painful?
Thanks alot for the update, I wish you LUCK!!!
Mast
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Mastifflvr28 (aka Michelle A.)
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hdbngr
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Re: New Stimulator Implant - Questions
« Reply #13 on: Oct 8th, 2003, 9:48am » |
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Not scary at all! The pain is not bad either. Had to giggle about the car battery imagery, my husband called me "cyborg". You may feel a little icky for 3-4 days, but when compared with the pain of 10, the surgery was a trip to Disney Land. Had it done on October 1, and I'm back at work today.
A little sore, couple of flareups, but otherwise I am very optimistic about this treatment. These devices are tiny, very flat and lightweight and the leads are implanted subdermally, so the whole thing is very discreet. No one is going to gasp and stare when you walk around the corner. I have had one person ask if I was wearing a heart monitor in the fanny pack, several others have asked about the bandage on the back of my neck, but otehr than that, it's not noticable. I am hoping I can get the internal battery, as they don't have to be removed while swimming or bathing, and then no one would ask why I am wearing a fanny pack with high heels at work. Guess I must be committing a fashion faux pas....
With the internal device, they give you an ID card so that airport security is not a problem. If anyone else here ever pursues this, no one but your closest partner will be able to tell you have it. Women would have a small lump on their chest wall under the arm, right about where a bra strap sits. With men, they usually implant them in the front of the chest, or by the shoulder blade.
For me, the worst part of it has been the 2 week water restriction until the incisions heal. Washing your hair is out of the question. Yuck!
I don't want to jump the gun and start hollering "everyone should get one!" until I have some long-term results, but beleive me, it's worth it.
Best of luck to everyone.
V
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UnsolvedEquation
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Re: New Stimulator Implant - Questions
« Reply #14 on: Oct 8th, 2003, 10:49am » |
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Wow...that was interesting. So, do they have to keep moving these leads that are attached or adding more leads to nerves until they find the right spots ? For me, most of my pain is in my eye. Just wondering how they would 'fine-tune' this procedure. MHNI has mentioned the new stimulator from Advanced Bionics that they want me to try. Was the one you had similar to this one ? (It's just the little tube like thingy on the end of the keychain). I may be having this done very soon. And, Oh yeah, one more question ... where did you have this done at ?
Thanks
Hoping you have PFD's & N's
~ Unsolved ~
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hdbngr
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Re: New Stimulator Implant - Questions
« Reply #15 on: Oct 8th, 2003, 12:18pm » |
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Hey Unsolved:
They usually require a "trial" implant first, where they insert one lead (lightly stitched under the skin) at the base of the skull, then connect it to an external battery. In the trial procedure, the lead is always outside of the skin, so it is very minor. You have to be awake to let the Doctors know where the pain is and how much coverage is achieved when they turn the device on. They take an XRay at that time to mark lead placement. This film and your verbal communication is later used to guide the real thing. You wear the trial for two weeks. If it helps, they will proceed. If not, you have just been saved from unnnecessary surgery and extra baggage.
I have not heard of Advanced Biotics, ..could you tell me a little bit more about how this device works? It's shaped like a tube? The two other implants I have seen really look like a tiny computer mouse... I am only aware of Medtronic and ANS.
With the actual procedure, they added a second lead, so I was awake for about an hour and a half while they asked questions and moved things around and experimented with different frequencies. Once we had good coverage, they put me all the way under to finish things up. The programmer I have can save up to 8 different programs (different frequencies and patterns, intensity) that you can adjust based on your pain that day/night. They hope they can get all issues addressed early on. Since there are tons of different stimulation patterns that can be programmed in, this fine-tuning just takes time and patience I guess.
The most severe pain I have is in the left eye, but this device addresses the lovely back of the head/temple and top of the neck pain that goes with...I had this done in Lansing. Michigan.
The implant procedure was no more painful than a rhizotomy procedure. The only difference is you have to be careful for 6 weeks following not to bend or lift anything so that the leads don't move and interrupt stimulation. If you knock them out of place, they will have to do surgery again to reposition them. One major benefit over the rhizotomy is long-term relief. In a rhizotomy, those nerves that have been warmed up will eventually heal, if it works at all, then it has to be redone every 3-6 months. For some, it works well though.
If they are offering this as an option for you, I would say GO FOR IT! I have been following your past posts and know you have had a rough time of it. They usually offer this when the hospitalizatins, physical therapy, drug therapy, DHE flushes, rhizotomies, etc., have not provided relief.
Once again, sorry for the length!
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UnsolvedEquation
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Re: New Stimulator Implant - Questions
« Reply #16 on: Oct 8th, 2003, 3:34pm » |
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Really, I can't tell you alot about the Advanced Bionics device (yet). Advanced Bionics created the new hearing devices that let deaf people hear again, like Rush Limbaugh. They have developed a new, supposedly very powerful and tiny, tube-like device that has a micro-chip inside it that stimulates the nerves and will not allow pain signals to travel to the brain, much like the device you have only smaller. NO ONE has had this yet and I may be the first...at MHNI. I gave you 2 links in my last post...1 for the company and 1 is a picture of the device. Check them out. I won't know if they are going to do this to me or not until November 19th.
Keep us informed about how well your doing.
Take Care
~ Unsolved ~
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Peppermint
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Re: New Stimulator Implant - Questions
« Reply #17 on: Oct 9th, 2003, 8:31am » |
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This is really wonderful - Vanasa, thanks for your long message, why you 'pologizin'?
I truly appreciate your responses. I wish I knew why (sic) why the fungal therapy hasn't been tried. I think about these surgeries and the risk involved is frightening, never mind the uncharted territory.
I sent "Oklahoma" the link to this thread. If he gets on the pc sometime soon, hopefully he'll read it.
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When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
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Pinkfloyd
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Re: New Stimulator Implant - Questions
« Reply #18 on: Oct 9th, 2003, 8:54am » |
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on Oct 9th, 2003, 8:31am, Peppermint wrote:
. I wish I knew why (sic) why the fungal therapy hasn't been tried. I think about these surgeries and the risk involved is frightening, never mind the uncharted territory.
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Well, *only* one out of five people actually DIED so why take the chance of doing something illegal when you have this option/opportunity available.
Makes sense to me.
PF
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hdbngr
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Re: New Stimulator Implant - Questions
« Reply #19 on: Oct 9th, 2003, 10:10am » |
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Pep:
I don't post often, but when I do, I tend to drag out the soapbox and expound. I do hope your friend reads the posts and finds some answers very soon. I don't have any clear cut answers, just what I have tried in the last 7 years.
Pink:
Ahhh well, you know...
When you have surgery, you only risk yourself. With the all natural therapy, risk might also be assumed by my husband, child, his job, my job, etc.
If there were a way to try it without undertaking the gardening personally - but I don't have the isolation and have read the warnings about trying to locate it (inconsistent quality) and that has stopped me cold. Sound like a wuss, I know. Just one more thing to pile on the ever-teetering stack of cards.
If it worked for me, or showed signs of helping, I would keep it going regardless of the risks, but overcoming a lifetime of programming and a fear of a knock on the door to take that first major step...that's been a tough one.
I personally feel that probably every treatment/cure for disease can probably be found in nature. We either aren't looking in the right place or we have already destroyed the means in some dark rainforest - having any idea what we have done.
It's a sad state of affairs.
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Peppermint
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Re: New Stimulator Implant - Questions
« Reply #20 on: Oct 9th, 2003, 10:21am » |
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on Oct 9th, 2003, 8:54am, Pinkfloyd wrote:
Well, *only* one out of five people actually DIED so why take the chance of doing something illegal when you have this option/opportunity available.
Makes sense to me.
PF
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Dude. I know. ONE is one too many. Sooooo.... the fungus therapy has been discussed before, though vaguely. I know I press to the point of being annoying *  * when I hear something isn't working, etc., but its not my body. I don't have clusters. I just hear the pain, I've seen it. I know people have their own reasons for trying/not trying the fungus therapy. I respect that and understand.
But if there are no obstacles except fear... ???.... then I'd be more scared of surgery. There are guidelines to the fungal therapy, and I've heard some crazy stories due to the strength of different crops or the way they were stored (i.e. honey) changing the expected effect. The way I see it, the effects of that will wear off, as where a surgery's negative effect will be permanent or fatal.
I dunno. Maybe I'm wrong. Maybe I just don't know 
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When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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Pinkfloyd
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Re: New Stimulator Implant - Questions
« Reply #21 on: Oct 9th, 2003, 11:37am » |
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on Oct 9th, 2003, 10:10am, hdbngr wrote:When you have surgery, you only risk yourself. With the all natural therapy, risk might also be assumed by my husband, child, his job, my job, etc.
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So, a person's death wouldn't have a profound effect on the family? Dead people don't hold jobs, don't hold their kids, don't hold their spouse.
I know all the fears. It took me a year of research before trying the fungus.
I believe that something in the range of 70-90,000 people die every year just through mistakes and infections contracted in a hospital. That doesn't include the 1% that die just from complications to surgery....no mistakes...just..."Gee, we're sorry...it just happens sometimes."
Make a GIANT mistake with shrooms and you end up talking to the couch instead of your spouse for a couple hours. But you can talk about it thereafter.
This is just my opinion, not a comment on ANYONE'S personal choices or why they make them. I'm sure I'll ruffle some feathers, but IMHO, if a spouse cares more about his/her job than his/her mate's life, then someone has their priorities mixed up.
I just can't imagine that conversation..."I'd hate for you to take a chance on losing your job sweetheart. Let's have some electrodes installed in your brain instead."
or
"Honey, I wouldn't want the kids to ever find out that I did something illegal. Doc says its just a little radiation applied to the brain and they say they are getting really good at it. They've done it 20 times already. Is our will up to date? Did your sister agree to take care of the kids if I don't make it out? Did you check online to see how much a seeing eye dog is, just in case?"
or
"Darling, I can't take the pain anymore but I just can't do the shrooms. What would the neighbor's say if I got caught? What if they did a drug test on me at work? Do me a favor and go get my gun will you please."
There is no guarantee. Shrooms do fail once in a while. But if they do, you don't have to make funeral arrangements.
just my opinion.
PF
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[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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UnsolvedEquation
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Re: New Stimulator Implant - Questions
« Reply #22 on: Oct 9th, 2003, 12:26pm » |
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Pink ~ You know that's bullshit ~ 1 out of 5 died my ass ! Come on now. I know you want to push those shrooms but damn ... you don't have to scare everyone out of other LEGAL options. All my procedures were PAINLESS. And I didn't have to worry about tripping out, running amuk, and going on a killing spree !
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Pinkfloyd
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Re: New Stimulator Implant - Questions
« Reply #23 on: Oct 9th, 2003, 1:06pm » |
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on Oct 9th, 2003, 12:26pm, UnsolvedEquation wrote:| Pink ~ You know that's bullshit ~ 1 out of 5 died my ass ! Come on now. I know you want to push those shrooms but damn ... you don't have to scare everyone out of other LEGAL options. All my procedures were PAINLESS. And I didn't have to worry about tripping out, running amuk, and going on a killing spree ! |
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"IHC: Hypothalamic Deep Brain Stimulation Shows Promise in Intractable Chronic Cluster Headache
By Larry Schuster
ROME, ITALY -- September 24, 2003 -- Long-term hypothalamic deep brain stimulation as a treatment for intractable cluster headache, first described in 2001, resulted in sustained pain-free experience or greatly reduced pain in most patients, according to 2 small studies.
But 1 patient in one of the studies died from a cerebral hemorrhage about 4 hours after the implantation operation, researchers said here during the 11th Congress of the International Headache Society and the Cluster Club meeting, scheduled just prior to the Congress, also in association with the International Headache Society.
The death was reported in 1 of 5 patients in a pilot study reported by Michel Venheede, MD, departments of neurology and neuroanatomy, University of Liege, Hospital Citadele, Liege, Belgium. No complications were reported for the remaining 4 patients, 3 of whom were pain free at 1 month, and the other patient had a 90% decrease in attack frequency"
I guess it was a success. The 5th patient also had a 100% decrease in attack frequency.
Anything else?
PF
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"Nothing is so firmly believed as what we least know."
"There is no passion so contagious as that of fear."
[Michel de Montaigne
www.clusterbusters.com
www.obscuredview.blogspot.com
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UnsolvedEquation
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Re: New Stimulator Implant - Questions
« Reply #24 on: Oct 9th, 2003, 1:25pm » |
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Tell me this...if everyone here started growing shrooms...what percentage will get busted and do hard time, lose their family, job, and STILL have clusters in prison ?
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