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Topic: New Stimulator Implant - Questions (Read 1780 times) |
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Peppermint
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Re: New Stimulator Implant - Questions
« Reply #25 on: Oct 9th, 2003, 1:37pm » |
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Holy Fucking SHIT.
Please. You guys are not supposed to be getting pissed off like this. Everyone has their OWN way. There's a million things that go through everyone's unique head, and with clusters, everyone's WAY COUNTS.
UE. The experiences with your sugery and the info you have given is invaluable. Lots of people are interested in knowing more about your procedure and what you are doing. WHY are you now a guest? Please don't...
PinkShark. You are one of the many people here that are very knowledgeable about the fungus therapies that have helped so many when nothing else would.
Agree to disagree. 
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When playing in the gym, beware of steel beams. - M. Amyx
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Pinkfloyd
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Re: New Stimulator Implant - Questions
« Reply #26 on: Oct 9th, 2003, 2:50pm » |
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on Oct 9th, 2003, 1:37pm, Peppermint wrote:PinkShark. You are one of the many people here that are very knowledgeable about the fungus therapies that have helped so many when nothing else would.
Agree to disagree. |
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First of all....I am NOT PinkSharkMark. I'm sorry there is sometimes confusion. Please don't attribute any of my remarks to PSMark. I'm not mad...just don't want any of my words put into PSM's mouth. I certainly don't want him to be held accountable for my remarks.
Second, I'm not "pissed" at all. I was just voicing my opinion. I respect everyone's opinions and decisions. I may not understand some of them but I won't come to understand those opposing opinions unless people are willing to actually talk about them. I know we all make decisins based upon our own situations, our own life experiences. We are all different. My opinions are only that, my opinions.
I'm not trying to scare anyone. People are scared enough just by the pain and the effects on their lives that this condition presents to everyone one of us every day. If I can't post facts...without being called on the carpet, so be it. I don't mind the carpet.
I agree that we all disagree on different things. It doesn't bother me or make me mad that people disagree with me. I'd worry if they didn't.
I can always just post a *hug* and leave my support at that. OTOH, I believe that sometimes the best support is to ask people to look at things from a little different perspective....and offer them facts that might help in some tangible way.
PF
PinkFloyd
Bob Wold 
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"Nothing is so firmly believed as what we least know."
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www.obscuredview.blogspot.com
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Peppermint
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Work it out baby!
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Re: New Stimulator Implant - Questions
« Reply #27 on: Oct 9th, 2003, 3:16pm » |
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*Slap my head*
Sorry PinkFloyd.... honest mistake...
I know you weren't arguing, I guess I just saw how delicate these subjects can get, because it IS delicate. I just don't want UE to leave, because of a heated discussion...as I've seen, its important to have 'em.
*sigh* sorry guys.
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You like apples? How ya like them apples?
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 #28 on: Oct 9th, 2003, 3:50pm » |
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Hey! Hey! HEY!
Didn't mean to start a war....
Pink:
I know from past conversations you understand, especially chronic clusters, and when you get hit 6, 8, 10 times a day, every day, surgery sounds really good. My spouse has been very supportive, and believe me, if he was in it for financial reasons, he would have dropped me when the first $500 Imitrex bill hit six years ago! It was my decision to try surgery, because if anyone were to ever take my child away because I was caught doing something illegal, my life wouldn't be worth much to ME.
I don't mean to downplay surgery. I wouldn't recommend surgery if anyone has clusters that are well controlled by preventative meds, abortive meds or O2. Should someone who gets two cycles, two weeks long each year go out and get a $50,000 surgery to stop them? No way.
I think it is an issue of access, maintenance, and/or education. A year ago, I couldn't imagine going without any meds for six weeks to flush my sytem before trying it. I was also being bombarded with junk email of "cures", two really notable ones including an $80 pair of magnetic earrings (I tried this) that supposedly would press on a nerve right inside of the cup of your ear and could reduce head pain, and another "indian herb" that you smeared around your belly button for CH relief (I didn't fall for this). Amazing what we will try in the quest for relief.
I'm med free now, but the point is, I knew if I waited, a "serious" treatment would continue to surface on the board as a valid option. After two years of watching posts on this topic alone, I think fungus has proven itself serious, but so have certain surgical procedures.
Some days, brushing my teeth is a challenge, much less making sure things are sterilized, vented, dried, measured, etc. I'm not afraid of trying it, I'm more afraid that it would work, then for whatever reason, I would lose access to it, and mess up my family's life in the process. I guess it is a profound statement on whether you decide to place control in your hands or a surgeon.
You are absolutely correct with your posting of the deep brain stimulation procedure. In my previous post, I mentioned this is a new and very, very risky procedure. I doubt anyone will find a Doctor in the U.S. willing to attempt it in the next five years. It's too new, too risky, to be considered a mainline treatment. Yet.
However, there are other procedures out there, namely the rhizotomy and the occipital implant that are nowhere near as risky. The rhizotomy is comparable to a trip to the dentist. Many, many people have the spinal/occipital implant, and the technology is at least 20 years old, it's only treatment of head pain that is new. Short of setting off the metal detectors in an airport, the complications of surgery compared to daily life with clusters seemed valid.
Having just had the occipital implant, I have discovered: I have an inch of shaved scalp on the back of my head (kind of ruins the haircut, but oh well) an incision in the same place, and one under my arm. I'm a little sore still, and have a new awareness of where my bra strap used to rest, but other than that, I feel pretty good. Is it a cure? That I don't want to say until I have some serious time to evaluate it and/or recommend it. I believe that like fungus, time will tell.
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Pinkfloyd
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Re: New Stimulator Implant - Questions
« Reply #29 on: Oct 9th, 2003, 5:28pm » |
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on Oct 9th, 2003, 3:50pm, hdbngr wrote:
I know from past conversations you understand, especially chronic clusters, and when you get hit 6, 8, 10 times a day, every day, surgery sounds really good. |
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Thanks for all your remarks.
I do understand completely exactly when and how, surgery sounds like the next best option. When I was in my worst cycle in 20 some years, I was getting hit around the clock..every two hours...12 hits a day...all of them 10's. I had lost 30 lbs (20% of my total weight) in 30 days. I had been approved for the Gamma Knife surgery at the University of Chicago Neurological Center (one of the finest in the world and a leader in the Gamma Knife procedure) and also the Microvascular Decompression Surgery at the University of Pittsburgh which would have been done personally by Dr. Janatta, the man that pioneered the surgery. I was also cleared for RF surgery under the supervision of Dr. Ninan Matthew in Houston. So, I not only had these as an option, just waiting for me to make my decision and make the appointments, but I was going to be seen by the top people in their field. My last gasp before surgery was to try the fungus. One hour after trying it, I knew I had made the right decision...for ME. For all I know, I might have become one of those statistics from the hospital operating tables. Odds are I would have been fine, but....who knows.
Hell, if 5 days or 5 years from now, this treatment stops working for some reason...I would probably call those doctors back and schedule surgery. I doubt I would subject my body, whats left of it, to any more prednisone, depakote, topamax, sansert, etc. My hips are shot from years of prednisone....I'll probably end up in surgery anyway just because my vascular system has been damaged so much from all those years of meds. My memory never did recover from the Topamax. Who knows what all those years of ergots did to my smooth muscle organs. Won't know til I visit the coroner some day. Who knows what years of Imitrex does.
I know these things keep us alive from day to day, cycle to cycle.
I know the first time in 20 years that I didn't have enough medical deductions to claim on my income tax was the year I found shrooms.
My family is grown...I don't have many of the factors to consider that other's do.
I also raised a family (4 kids) almost completely while suffering from cluster headaches. Minimum of 2, 4 month cycles per year to one 5 year chronic cyle. I know what this can do to a family. I know the regrets, the tough decisions, the heartbreak, the missed opportunities, the lowered standard of living, the PAIN for everyone in the family. I spent all those years feeling like I never provided for my family the way I felt I should have. For what my family went through for 23+ years, I might as well have been in prison. Just because I am cluster free, doesn't mean that I don't have some left-over demons.
If I didn't know the tragedies of living with cluster headaches, I wouldn't be so inclined to put myself out there for all the world to see, passing on what I feel can be important information to people in the same boat I was in for so many years. I only have one way to repay those that convinced me that it was worth it to try mushrooms. This is it.
I hope and pray that the procedures you and others, whatever we ALL go through, offers nothing but a pain free, long and happy life.
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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forgetfulnot
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Re: New Stimulator Implant - Questions
« Reply #30 on: Oct 9th, 2003, 9:59pm » |
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Bob is so eloquent I'm afraid to say anything except that I have one question for everyone. When was the last time the Police, DEA or FBI raided your house looking for any kind of contraband? Most likely never if you are a stand up tax paying citizen.
You should consider the risk-benefit ratio of shroom treatment in the same way you consider surgeries up and down sides.
Lee
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Pinkfloyd
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Re: New Stimulator Implant - Questions
« Reply #31 on: Oct 9th, 2003, 10:57pm » |
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Lee,
Thank you very much.
Peppermint,
No need to apologize at all. It was a well intended, honest and thoughtful post.
Everyone,
~peace~
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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hdbngr
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Re: New Stimulator Implant - Questions
« Reply #32 on: Oct 10th, 2003, 7:56am » |
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Pink:
First time I have thought about the "leftover demons" experienced by those with a long battle with CH. I think some of us (me) get so focused on how much better life would be with fewer or no clusters, we forget that there may be a lot of emotional, financial and physical clean-up after the dust settles.
I am amazed by your resiliance. Thank you for your continued efforts and your wonderful post. I'll never naysay it, because in the great battle against CH, you only have to ask one question, "Where's the money?" The money isn't here, with this treatment, no one central person is raking in money, hand over fist, trying to pitch the idea.
One more devil's advocate selection of questions, and please don't be offended:
No, no one has been banging on my door. But with on-line ordering of materials, a paper trail is created, and that is when you gain attention you wouldn't want. How do you get around that as a potential downside?
If you do ever head down the surgery route again (and I hope you never need to) please avoid the microvascular decompression.
I'm also curious if any of the Doctors ever asked why you decided against the surgical options after being approved. Did they wonder why a long-time sufferer suddenly dropped out of sight, and no longer needed treatment? Did they even ask or care why?
Thanks in advance,
V
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Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
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Pinkfloyd
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Re: New Stimulator Implant - Questions
« Reply #33 on: Oct 10th, 2003, 10:42am » |
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on Oct 10th, 2003, 7:56am, hdbngr wrote:Pink:
One more devil's advocate selection of questions, and please don't be offended:
No, no one has been banging on my door. But with on-line ordering of materials, a paper trail is created, and that is when you gain attention you wouldn't want. How do you get around that as a potential downside?
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No offense taken. All good questions. I'm usually not even offended by *bad* questions. 
This is a concern many people have. A couple of things of note. That "paper" trail very clearly leads to the top of the food chain, the supplier. He, if doing everything legally, such as selling to only the 48 states in which spores are legal, would be the first one contacted, I'd imagine. I'd venture a guess that if you compared this to selling illegal drugs, the government often goes after the little guy mainly to work their way to the top. No need here to work their way up, if they so choose. The top guy is right up front.
It is not illegal to purchase or possess spores. They contain no illegal substances...psilocybin.
There IS one major supplier that is having major legal troubles. He is in trouble, not for selling spores, but all the instructions to grow them plus all the materials to do so. Sort of like, not only selling uranium online, but putting the instructions to build a bomb in the package, along with all the other components. He also got caught with a major amount of psilocybin (mushrooms).
How major was his operation? It was reported that he sold 50,000 spore syringes per year. Imagine how many mushrooms he had to have on hand to produce that many syringes. He was in business for many years, in the open. Imagine how many paper trails there are to follow. And why? To find one cluster sufferer in Peoria that bought one syringe in 1997. Get a judge to issue a search warrant to force the ISP to give out the name of a person that bought a LEGAL substance to look at spores under a micoscope for a science project? The FBI actually bought spores from the guy. Not to have evidence that he sold them, but so they could do testing on them. They had to use his instructions to grow their own mushrooms so they could produce psilocybin and run tests on it.
I don't want to minimize the concerns but I want to try to be realistic about them. They are there, for just about everyone. The odds of actually getting in trouble, in my opinion, are remote. But, what were the odds that I'd develope clusters in the first place? Remote. When I decided to take the plunge, so to speak, the odds of my committing suicide were greater than my going to jail. No one, including me, wants to end up as some test subject or "example" to find out who can get into trouble.
You can always find someone you can trust, and do some phone work  instead of having anything in your email or on someone else's hard drive.
continued....I ramble too much....
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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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Pinkfloyd
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Re: New Stimulator Implant - Questions
« Reply #34 on: Oct 10th, 2003, 10:44am » |
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continued:
on Oct 10th, 2003, 7:56am, hdbngr wrote:Pink:
If you do ever head down the surgery route again (and I hope you never need to) please avoid the microvascular decompression.
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Thanks, yes, this was my last choice as I would have had to have it done on both sides, as my clusters switch sides.
This is actually one of the things that gets me most upset with the state of affairs regarding psilocybin. In essence, the government is telling me, "no you can't eat those two mushrooms to treat your clusters. You're just going to have to go to Pittsburgh and have them drill two holes in your skull, the size of quarters, and let the doctors experiment with your brain/nervous system. Sorry, hope you make it"
on Oct 10th, 2003, 7:56am, hdbngr wrote:Pink:
I'm also curious if any of the Doctors ever asked why you decided against the surgical options after being approved. Did they wonder why a long-time sufferer suddenly dropped out of sight, and no longer needed treatment? Did they even ask or care why?
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They didn't ask. So I decided to write to one of the doctors, who was involved in all these decisions. I told him I wanted to explain why he hadn't seen me in two years. He congratulated me on my success. Was happy I was pain free and happy the treatment worked. He also passed along more information as to how and why psilocybin works for clusters and we discussed it's close relation to sansert and other legal drugs.
Psilocybin is NOT unknown in it's properties or its actions upon the mechanisms that produce/treat clusters. The doctors that are on the front lines along with the researchers are well aware of psilocybin. They are not too enthused about discussing it in email though. They too have concerns, as they are under the microscope all the time, mostly in regard to prescribing practices of legal medications such as oxycontin et al.
A big part of the war on drugs is focused upon doctors and they have a completley different set of concerns because of it.
I actually had one doctor tell me he wished he could prescribe psilocybin for me, but obviously couldn't. I hadn't even asked about it, he brought it up to me in an office setting. This came from a doctor that will not prescribe "legal" narcotics for cluster treatment.
There are legitimate concerns. There are people that travel outside the US for the treatment to avoid completely, the legal issues. Fresh psilocybin mushrooms are sold over the counter in England, as an example.
There obviously hasn't been enough "clinical" testing done but there are thousands of years of psilocybin use for medicinal purposes, from which to draw one's own conclusions. Would I like more clinical trials and testing, of course. That is precisely what I and others are working towards. But if I had to wait for my government to tell me, it was ok with them.....well, I just couldn't wait. Maybe I'm weaker than most but I thought giving them 23 years was enough for me. I, along with others, will continue to also work within the system where we can hopefully make a difference for those that are waiting now, and those that will be waiting in the future, our children.
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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vig
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Re: New Stimulator Implant - Questions
« Reply #35 on: Oct 10th, 2003, 1:10pm » |
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well said!
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never, Never, NEVER quit. -Winston Churchill
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