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Dave_Emond
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Serious Topic!
« on: Jan 27th, 2006, 2:36am » |
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Time to talk seriously and only want serious responses … thank you.
Most of you know that besides being a Chronic Clusterhead, and I’m again in my “Inner Cycle”, meaning 8-10 attacks per 24 hours, major sleep deprivation, a suppressed Immune System and a long list of other problems that life isn’t that great. But, this isn’t the purpose of this post (for the most part). Besides the recent inability to swallow food or water when I want, another problem has raised that I’ve not told anyone about. I’m not going to here either or probably not even any doctors. If I were to do so, most likely, I’d be hospitalized for good (or as I see it … no good). I watched my father slowly and cruelly die from ALS; I refuse to go out that way. In my situation now, they’d probably hook me up with tubes in every hole in my body and probably make a few more.
So, forget any pity, I don’t want it or need it, I realize where I’m at and can accept it. What I really need is some help in another way.
What I need is good, reliable information. I guess first I need to ask some questions:
1. Is it legal in the USA to experiment on the brain of a live volunteer?
2. If not, is it legal somewhere overseas?
3. Regarding legalities, what about removing the skullcap for experimentation?
4. Are there surgeons, researchers or specialists knowledgeable enough in Cluster Headaches to do such experiments?
5. Do you know any who would be willing to attempt such an experiment?
6. If so, who, and how do I get in touch with them?
Please take this as seriously as I am. Imagine the possibilities a qualified researcher could find about Cluster Headaches by being able to work on a live brain? Years of advancement could be possible! Even if they could just identify a cause would be a huge advance, and … dare I say, possibly a cure?
I’m not in any way trying to play a hero, in fact, the whole idea is scary. But, I can’t help but think of the children who suffer from CH. I see no real progress that offers them any hope in the future with the route we’re on.
We know pharmaceuticals are not the answer or alternative treatments. Yes, they may temporarily help, but they will not show cause or provide a cure.
This is not a new or desperate idea for me, I’ve considered as many aspects of this as I can think of. Even as far as thinking I may need to be strapped down as they check for triggers, most likely under MRI during experiments. Pain will be incredible to say the least as I doubt it would do much good to be medicated while experimenting. I understand there would be the possibly of death of which if you considered my alternatives, is an acceptable risk.
Again I ask only for information that will direct me to the right resources and need your help. I am not writing this because of the increased levels of CH pain. I will not lay in any hospital bed and wait to die in humiliation.
If there is something I can really do to make a difference for CH sufferers worldwide, it would mean so much more to me than lying back and doing nothing but wait for the inevitable.
Thanks for any help I can get,
Dave
(I should also make something perfectly clear; I am in no way suicidal as some rumors may have spread. If this idea is not possible, I will continue on best I can and fight to the end. But I don’t want to hear anything about talking me out of this, I only seek real and pertinent information. That’s all.)
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chewy
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Dr. Ali Sultan might help.
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floridian
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on Jan 27th, 2006, 2:36am, Dave_Emond wrote:
1. Is it legal in the USA to experiment on the brain of a live volunteer?
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Experimental medical procedures are generally legal, provided it may improve the condition of the patient, or lead to future improvements. Each researcher may be under various restrictions based on their employer, state, etc. Hard to generalize.
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JJA
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Re: Serious Topic!
« Reply #3 on: Jan 27th, 2006, 8:53am » |
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Quote:1. Is it legal in the USA to experiment on the brain of a live volunteer? Yes, but...
2. If not, is it legal somewhere overseas? Yes, but...
3. Regarding legalities, what about removing the skullcap for experimentation? Yes, but...
4. Are there surgeons, researchers or specialists knowledgeable enough in Cluster Headaches to do such experiments? Yes, but...
5. Do you know any who would be willing to attempt such an experiment? No
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I don't think what you have in mind is possible. There is Deep Brain Stimulation which is still experimental, but I doubt if you could qualify given your current state of health. To me, it sounds like what you have in mind is allowing someone to open your skull without much idea of what to look for. This would be illegal in the USA and probably everywhere else where there is the capability to look at a living brain. It is possible to allow yourself to undergo attacks during an fMRI or PET scan, but these type of studies are usually carefully planned before they look for participants. I am not aware of any involving clusters at this time.
Jesse
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Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
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carriefu
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Re: Serious Topic!
« Reply #4 on: Jan 27th, 2006, 9:06am » |
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i suffered my first headache at 15, and missed most of my high school years , what you are saying is commendable,however, i know that even with alzheimers disease the brain bank doesnt come in until after death. your best bet is to speak to medical schools, they are often willing to take chances, and try to fight the laws.
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nani
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Re: Serious Topic!
« Reply #5 on: Jan 27th, 2006, 9:41am » |
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Sorry you're having such a hard time, Dave. 
Just a little input from me here...
I've had brain surgery. If you think your head hurts now... dude, you have no idea how much it can hurt. I don't recommend doing it unless you have NO choice.
Hang in there, honey.
hugs, nani
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Bob P
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Re: Serious Topic!
« Reply #6 on: Jan 27th, 2006, 9:47am » |
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I talked with Goadsby about this a few years back. At that time he said they were in need of cluster brains to study. I'm sure he was talking about brains that people weren't using anymore (like Hub's).
The ...ectomys and stimulators are the only proceedures I'm aware of on live brains.
Man, a lot changes in 5 years!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Filbert
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Re: Serious Topic!
« Reply #7 on: Jan 27th, 2006, 10:09am » |
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You're right about Prof. Goadsby and brain donation Bob. He was still asking CHrs to donate their brains for research last year but only after death of course 
Fil.
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MJ
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Re: Serious Topic!
« Reply #8 on: Jan 27th, 2006, 11:46am » |
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I think most tools to study the brain are and were developed to be used outside the skull. Reading signals such as electrical impulses, brain waves etc..
When a cadavers brain is studied its generally disected and searched visually for abnormalities.
Even goadsby's hypothalmus research is theoretical, though he showed some activity in the area it's not known for sure to be a cause or effect.
More research is needed along the lines of chemical actions wether originating in the brain or not. To me this seems more logical than opening the brain and not knowing excactly what it is they are looking for.
Dave I think I understand where your coming from and I maybe would do as you consider. One never knows untill you are there.
Maybe some could find a link through DNA research if they were specifically looking for CH and/or ALS possibilities and possibly a cure this way.
Noble thoughts my friend. But without a solid idea of what to look for it seems like an extremely long shot.
MJ
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MJ
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Dave_Emond
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Re: Serious Topic!
« Reply #9 on: Jan 27th, 2006, 12:17pm » |
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on Jan 27th, 2006, 7:46am, chewy wrote:| Dr. Ali Sultan might help. |
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Already seen enough posts from you, could care less to ever see another! (BTW: You've never been funny!)
1. Is it legal in the USA to experiment on the brain of a live volunteer?
Quote:| Experimental medical procedures are generally legal, provided it may improve the condition of the patient, or lead to future improvements. Each researcher may be under various restrictions based on their employer, state, etc. Hard to generalize. |
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Exactly my problem with this idea and a large area of my research. Thinking that possibly I could apply under an attempt to "improve the condition or lead to future improvements." Maybe worth a try? And yes, I've seen almost nothing but restrictions, must be a way around them with the right researcher? Thanks Floridian for a serious answer, I appreciate it.
Quote:| I don't think what you have in mind is possible ... but I doubt if you could qualify given your current state of health. To me, it sounds like what you have in mind is allowing someone to open your skull without much idea of what to look for. |
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So far Jesse, I've had many MRI's that still show my brain as normal, it's the rest of my body that is failing. But, I have considered this as a possible problem and understand you bringing it up. I guess it would probably help to get an MRI done like Dr. Goadsby's that would at least show something. Then, we wouldn't be going in blind as what to look for. Good points, thanks.
Quote:| your best bet is to speak to medical schools, they are often willing to take chances, and try to fight the laws. |
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Another area I've thought of, part of why I'm asking here, would you or anyone else have any leads I could research in this area? Of course, I'd only want to even talk to those that are very familiar with CH. Thanks Carrie.
Quote:| If you think your head hurts now... dude, you have no idea how much it can hurt. I don't recommend doing it unless you have NO choice. |
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Pain is not my issue here, but I know you can't help but be concerned Nani, it's part of your caring nature. I don't look at this as having "No choice" but more of still being in shape to have a choice, before that is possibly taken away. Although, I've filled out a medical will with instructions, that include the brain donation. Still have to name the benefactor of my brain. Thanks Nani.
Bob and Fil, you're both right here, at least as far as a few years back. Maybe, just maybe there may be some new possibilities.
I've gotten some emails and PM's from caring people, I appreciate your concerns. I ask that you please understand that this has nothing to do with my current "inner cycle." Of course they suck, but they are a part of my "normal life" and are not an influence of this idea. I'm not depressed or anything along those lines, in fact, spite everything, I'm actually at the best emotional state I've been in for many years. I brought up this idea a couple years ago, so it's not something I came up with on the spur of the momment. Not looking for a way out, have even talked with my family and they understand and will support me in this decision.
I appreciate all your input, have considered most all responses and advice. As I continue to research this, I certainly could still use any info anyone has.
Thanks All,
Dave
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carriefu
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Re: Serious Topic!
« Reply #10 on: Jan 27th, 2006, 12:27pm » |
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im not sure who to get you in touch with, im at wits end with the medical profession as it is!!
let me do a little reseach, i do know a head neuro, but, i think most of them think we can overcome this ourselves.
there has to be a brighter future for the next generation and its up to us to find it
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Dave_Emond
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Re: Serious Topic!
« Reply #11 on: Jan 27th, 2006, 12:38pm » |
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on Jan 27th, 2006, 11:46am, MJ wrote:I think most tools to study the brain are and were developed to be used outside the skull. Reading signals such as electrical impulses, brain waves etc..
When a cadavers brain is studied its generally disected and searched visually for abnormalities.
Even goadsby's hypothalmus research is theoretical, though he showed some activity in the area it's not known for sure to be a cause or effect.
More research is needed along the lines of chemical actions wether originating in the brain or not. To me this seems more logical than opening the brain and not knowing excactly what it is they are looking for.
Dave I think I understand where your coming from and I maybe would do as you consider. One never knows untill you are there.
Maybe some could find a link through DNA research if they were specifically looking for CH and/or ALS possibilities and possibly a cure this way.
Noble thoughts my friend. But without a solid idea of what to look for it seems like an extremely long shot.
MJ |
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Thanks MJ,
I'll admit I agree with everything you've said, wouldn't it be something though if we could get away from theoretical research and maybe find some facts?
I also would hope there would be no need to remove the skullcap, but if it could make that much difference, I'd be willing to go ahead with it.
It would be hard to convince me that researchers are going to learn even a little bit from dead brains, but if that's my only choice, they are welcome to it. Of course, by that time it may be more likely that mine would possibly be useless if my current state eventually does affect my brain.
The DNA research area is a good idea I haven't looked into yet ... but I will now.
Thanks MJ,
Dave
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Obstacles are those frightful things we see when we take our minds off our goals.
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Dave_Emond
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Re: Serious Topic!
« Reply #12 on: Jan 27th, 2006, 12:42pm » |
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on Jan 27th, 2006, 12:27pm, carriefu wrote:im not sure who to get you in touch with, im at wits end with the medical profession as it is!!
let me do a little reseach, i do know a head neuro, but, i think most of them think we can overcome this ourselves.
there has to be a brighter future for the next generation and its up to us to find it |
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Thanks Carrie,
Any help is appreciated!
Would comment more now ... but guess who's here again? Must take a break for now,
Dave
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carriefu
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Re: Serious Topic!
« Reply #13 on: Jan 27th, 2006, 12:44pm » |
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take care and fight back hard
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Margi
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Re: Serious Topic!
« Reply #14 on: Jan 27th, 2006, 1:55pm » |
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Dave, even though you denounced it, you ARE a cluster hero for even investigating this avenue.
What about Dr. Kudrow's office in California? He's a lot closer, geographically, to you than Goadsby... He's one of the leading cluster researchers. Or maybe talk to DJ about the specialists he saw at Standford? Cat's suggestion of talking to the colleges and teaching hospitals is a good one, too. Maybe you can be a pioneer for a new procedure that WILL shed some light?
I know this is a very morbid question/suggetion and I deeply apologize in advance but....HAVE you signed your donor card and/or made your donation wishes known formally (like, in a will)? I'm not saying you're going to check out any time soon, please don't misinterpret that but I have a friend that worked with donor families and you'd be suprised how many people don't make preparations for this. If you are not able to get any testing now at least you could ensure that you will later. Again, I'm sorry - horrible topic to bring up on my part. Forgive me.
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forgetfulnot
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Hi Dave, that's a tough question. Legal? maybe. Ethical, probably not. With all of the imaging technology available invasive exploration I think would be ruled out.
Or at least scare off the people capable of such things. They would resort to the Gamma Knife or some other non invasive proceedure first I think.
Hang in there bud, will be pulling for you.
Lee
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chewy
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Quote:| Already seen enough posts from you, could care less to ever see another! |
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Just skip over them. Its easy.
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forgetfulnot
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on Jan 27th, 2006, 2:53pm, chewy wrote:
Just skip over them. Its easy. |
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Some people don't know of or care of Dave's situation, apparently.
Lee
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chewy
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apparantly.
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Pinkfloyd
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Re: Serious Topic!
« Reply #19 on: Jan 27th, 2006, 6:31pm » |
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Hello Dave,
I'd suggest writing to Dr. Sewell. If you don't have his email addy, let me know.
He is a neurologist among other things. He may have some leads or ideas.
Just for reference, most researchers would prefer patients without additional maladies when looking at a particular disease/condition. It becomes a matter of, "ok, we found this wrong and that wrong, but don't know for sure if it's connected to this problem or that problem"....so to speak.
If he can't help, or you need more info, let me know. I'll try to find out some more info for you the week of 2/13. I'll be in the company of a few cluster experts.
hang in there bud!
Bobw
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Cathi04
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Re: Serious Topic!
« Reply #20 on: Jan 27th, 2006, 6:47pm » |
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Dave,
I remember you bringing this up once before. It is an awesome opportunity, and you are generous to even pursue this.
I guess I'm with some of the others here who suggest you contact Goadsby, or Sewell, or a neuro you know and trust, and have a very open, direct discussion about this.
Short of that, and I, too dont mean to be insensitive or even to jump the gun- but, in the event that your time is short, would you...could you consider donating your body to science?? Not an organ....teaching hospitals DO have a need for this, and it is handled in a compassionate, caring way. I know....my father was a donr, my mother is a donor, and so are all members of my immediate family. Please let me know if you need information.
Perhaps you can do nothing in this life.....but, there's a good chance you may help someone lead a better life posthumously. It's a sticky subject, I know, and MORE THAN ANYTHING, I'd so prefer it if you were to make a miraculous recovery and join Clusterville at the next Convention.........I will hold onto that hope.......
I just want to see you PF 
Cathi
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forgetfulnot
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Hi Dave, I forgot to mention before of a neurosurgeon in Oklahoma city that does those skull off type procedures.
His name is Dr. Paul Francel, he works in the largest teaching hospital in Ok. for what thats worth. I have his phone number and address under something here in my office, he might be interested in your case, the guy knows what he's doing and would be a good consultation if nothing else..
By the way he is one of the top 10 people in oklahoma when it comes to $
Lee
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| « Last Edit: Jan 27th, 2006, 10:56pm by forgetful » |
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Dave_Emond
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Re: Serious Topic!
« Reply #22 on: Jan 28th, 2006, 12:47am » |
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on Jan 27th, 2006, 1:55pm, Margi wrote:
What about Dr. Kudrow's office in California? He's a lot closer, geographically, to you than Goadsby... He's one of the leading cluster researchers. Or maybe talk to DJ about the specialists he saw at Standford? Cat's suggestion of talking to the colleges and teaching hospitals is a good one, too. Maybe you can be a pioneer for a new procedure that WILL shed some light?
I know this is a very morbid question/suggetion and I deeply apologize in advance but....HAVE you signed your donor card and/or made your donation wishes known formally (like, in a will)? I'm not saying you're going to check out any time soon, please don't misinterpret that but I have a friend that worked with donor families and you'd be suprised how many people don't make preparations for this. If you are not able to get any testing now at least you could ensure that you will later. Again, I'm sorry - horrible topic to bring up on my part. Forgive me.
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Don't worry about bringing up the Living Will Margi, it's not really morbid, it's actually a practical thing that everyone should do, no matter their health. Yes, I have one underway, a lot of what I learn here now and from whichever doctors or researchers I talk to can help me finish it.
Dr. Kudrow would be a good start to contact, actually so would Dr. Sewell and probably even Dr. Francel as well. Might just try putting together a template sort of letter, list all the other existing medical details, explain exactly what I'm seeking and see what kind of responses I get. Bob, I definitely would appreciate you bringing this up before any Cluster experts you meet.
For those who mentioned certain doc's, could you PM or email how to contact them?
I'm extremely busy as I don't have that much time where I get "windows" of somewhat free pain free time, well, there is never any PF, just more bearable.
As I'm looking into this, I'm also in the process of moving into a assisted living apartment and putting together a presentation for OUCH and the Grants Committee to which I've recently joined.
Today was one of my worst days, seems since this morning I was just battered with an onslaught of one CH attack after another, which is why I need to keep this post somewhat short, I feel like someone has taken a bat to my head and am finding it difficult to write even now. Wanted to reply to each post separately, but really just need to get through this reply.
Many good leads here worth following and I sincerely appreciate them all. Felt I needed to reply at least something for now in thanks, but I'm not in well enough shape at the momment to keep going. Will be back to follow up next chance I get,
thanks again,
Dave
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sandie99
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Re: Serious Topic!
« Reply #23 on: Jan 28th, 2006, 2:43pm » |
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Dave,
you're ready for quite a thing, I must say. I haven't heard that something like that would be done here in Finland, the medical circles are lots of smaller in here. But naturally I'll let you know if I see something about it written in here.
In the meantime, I wish you strength to deal with the devil and the rest.
Wishing you the best,
Sanna
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CH happends, Live anyway! PF days to us all!
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Dave_Emond
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Re: Serious Topic!
« Reply #24 on: Jan 29th, 2006, 5:32pm » |
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So many messages and emails ... I appreciate them all. Just wanted to let you know, because of the volume, it may take me a while to get back to each of you ... but I will.
Thanks for all the help and care, trying to respond to as many as I can per day.
Still ... any other ideas or leads ... I'm still open for help.
Thanks again,
Dave
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