Experimental MS treatments and the ethical issues.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Cece » Thu Nov 25, 2010 2:41 pm

Most of us are here because we are genuinely hopeful about CCSVI and somewhere in the process of researching or getting treated or having been treated. Debating can be fun, but when it feels like pot shots, it's not fun.

I'm still surprised to hear your mom had her veins tested. She must have been disappointed.
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Postby concerned » Fri Nov 26, 2010 12:15 am

Nothing can disappoint her.

Just like many on this board.
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Postby Cece » Fri Nov 26, 2010 12:17 am

concerned wrote:Nothing can disappoint her.

Just like many on this board.

I like her more and more already.
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Postby EJC » Fri Nov 26, 2010 6:44 am

concerned wrote:Nothing can disappoint her.

Just like many on this board.


You have the right to an opinion, like any free thinking individual.

However I like to base my opinions on information I've personally obtained as well as what I've read in the press/on forums/seen on TV.

For example, I don't personally believe in God, any other form of deity or religion as a whole, I happen to think it's the single biggest con inflicted on mankind. There are still countries where I would be executed for that belief (or lack of belief) today. However, if you want to visit church every Sunday and worship, I personally respect your choice and don't judge you because of that choice.

I hope CCSVI is going to help my wife, she has been scanned and proved positive for CCSVI and we're awaiting a procedure in Scotland.

When we have had that procedure we will have personal hard fact about how it worked for her, my opinion of CCSVI will then be refined when that further information comes to light.

I am a logical, reasonable thinking businessman. CCSVI is logical in my (non medically trained mind). My wife is on Capoxone for her gradually worsening RRMS which she's had for 12 years.

I think logically, that this is a reasonable procedure to try, it is effectively off label use of an existing procedure and the mathematics of the risks add up to a degree that it's viable.

Feel free to not believe in the process, but respect others who feel it is a plausible theory, to explore it.
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Postby formyruca » Fri Nov 26, 2010 2:50 pm

solney,

I commend you for your determination to help your Mother, she must be very proud of you.

Best wishes and continued healing.
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Postby EJC » Sat Nov 27, 2010 12:45 pm

Why are (quite valid) replies being removed from this thread?

Is there some internal politics going on on this forum?
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Postby concerned » Sat Nov 27, 2010 1:14 pm

I think it's maybe because I posted a link to a pretty neutral article and a bunch of people used it as an opportunity to attack me rather than discussing anything about the article that I posted.


However, at the start, I think Cece and I had a good, constructive and polite debate going on.
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Re: !

Postby Jugular » Sun Nov 28, 2010 9:39 am

solney wrote:Unfortunately opportunities don't just come to you. You have to go out and get them. I have been studying this subject for one year now, and have read numerous papers and opinions on the subject. As I stated my mother was rated a 8.5 and was not long for this world. Her choking was getting so bad and her speach was non coherent. I by no means jumped on the Ccsvi bandwagon without careful consideration. Next we had my mother tested at false creek and the tests came back with narrowed right jug and pinched left. At this point it's hard to deny that she in fact had Ccsvi. The next stage was looking for treatment as close to home as possible. Without a referral from our nero, no doctor in the states would return my calls,so we decided to take a chance on Mexico. We never been treated so well, and the level of care was greater than what we have ever received in Canada. The improvements were immediate and continual. Forgive me if after all this I am now bias in the favor of Ccsvi , but seen 5 other people with dramatic improvements well I was there. My mothers life was saved by this procedure and now I want to help as many people as possible. When you have seen what I have seen, you just have to shake your head at the poor patients with loved ones that continue to openly deny the hope for them. I pray that this procedure will be offered to all that needs it before it's to late, and I will continue to spread the word. please read our story at www.prpeak.com, front page.
Many of the hyper-critical naysayers don't have a horse in this race like you. Didn't mean to call your mother a horse, but you get the idea. Zamboni counsels caution on the side of not getting liberation treatment outside of a clinical trial. On the other hand, he performed the procedure on his wife. There is enough information out there to make an informed decision. Like your mother, I was imaged at False Creek, and seeing the severe stenosis makes the treatment decision easier. I view the jugulars as the exhaust pipes of the brain. If my car's exhaust looked like that, i'd take it into the shop to get fixed. And it's my business if I do.
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Postby solney » Sun Nov 28, 2010 9:19 pm

I couldn't have said it any better, Tx jugular. And Tx formyruca I'm sure my moms proud of me. I watch how she has battled tirelessly and no that she would have spear headed this herself , if it had happened ten years ago.
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