Experimental MS treatments and the ethical issues.

[Cece]

formyruca, concerned has said recently that his mother cannot travel and he's not near any treating doctors.

Congrats on your own ballooning, it sounds like you are feeling well!

[solney]

My mother was like a sack of potatoes, and we managed to get her from Vancouver to Mexico and back. She was an 8.5 Edss scale. Now she like a 7 and is completing sentences and the list of improvements goes on and on. All I had to do is start reading at this site and I was sure that this procedure would help her.

[eric593]

All I had to do is start reading at this site and I was sure that this procedure would help her.

I am happy for your mother, I am. However, IMO, it is statements like the above that raise red flags for many of us because they don't appear to be grounded in a good, unbiased understanding of all the information that has come out on CCSVI and treating it.

For example, there is a very lengthy thread here on people who were not improved, people who have worsened, and serious complications from the procedure. This doesn't take into account the conflicting research, the high re-stenosis rate or the high costs and lack of solid data.

I'm not saying this won't turn out to be important to MS pathology, but at the present time there is far from a clear cut case for immediate CCSVI treatment. No one should be "sure" this procedure will be helpful at all, based on what we know. Those kinds of bold statements scare me and cause me to think your reading may be biased and one-sided if you've reached such a certainty that CCSVI treatment absolutely WILL help. I think it makes us look desperate and irrational when people start making such bold assertions at such a preliminary stage of CCSVI investigations, given ALL that we know thus far, both pro and con, taking into consideration ALL experiences and ALL information. I don't think your conclusion is an accurate or obvious representation of available information. Remember, even Dr. Zamboni cautions against CCSVI treatment outside clinical trials, especially treatment abroad. Do you know better than him?

[MarkW]

The journalist has asked the wrong question.
Let me explain:
1 - CCSVI is a disease proposed by Prof Zamboni.
2 - Extracranial Venous Stenoses (EVS) in pwMS are a symptom indentified by Prof Zamboni and the observation repeated by many centres around the world.
3 - A correlation between EVS and MS is over 50%.

So the question from the journalist should have been:
"Is it ethical to leave a symptom in pwMS untreated, while basic research is performed ? as a safe symptomatic therapy is available. "
The information that "Balloon Venoplasty for Stenoses has been performed without any deaths in over 2000 pwMS" from neurologist Dr David Hubbard should be offered to the journalist.

Over the you North Americans to complain about the standard of the journalist's understanding and the question asked.

MarkW

[concerned]

Concerned,

I can not take it back. I have read enough of your misinformation and feel you are not being proactive enough to get your mother screened for CCSVI. Perhaps I am wrong and there are other factors involved other than your continued skepticism. If there are financial factors, I would be willing to help. Please at least see for yourself and get her scanned and then you can consult with a Dr. on how to proceed.

Like I said, I am willing to help with the costs. BTW, I was ballooned today and I am going to be a lot more vocal now that I feel the results for myself. Maybe you could start a fundraiser?

If it was you that had MS, you would do it.

My IR told me about a 71 old that was out of wheelchair after the procedure.

I'm sorry I implied you are not taking care of her... I would hope you are.

I can't imagine she has a good impression of CCSVI, if she getting all her information from you.

My mom is a ccsvi true believer. We disagree, but we can agree to disagree.

[Cece]

My mom is a ccsvi true believer. We diagree, but we can agree to disagree.

If she ever comes looking for help getting her to treatment, she will find it here.

solney, I am amazed to hear that with an EDSS 8.5 she was able to travel like that and then to get the results she's getting! So happy for your family.

concerned, I found this to be admirable:

Once again, in no way am I preventing my mother from getting "liberated". If the opportunity should arise, I'd help her do what ever she wanted because she can't do it herself. My mothers choices are her own, regardless of what I think of them, and if she needs help to do the things she chooses, then I'll help her.

And as a true believer myself, I hope that opportunity does arrive.

[Lyon]

.

[concerned]

Thanks Lyon and Cece.


Also, my mom was "screened" for CCSVI almost a year ago. They found narrowing, but not stenosis.

[formyruca]

Oh excellent, Lyon has joined the conversation... I would like to offer to pay for your transportation to see Dr. Haacke and you can participate in helping better understand the CCSVI theory. Since Dr. Haacke is paying participants, this will be of no cost to you. Please help us and others you may know that are afflicted.

[CCSVIhusband]

Or can you treat a venous outflow obstruction disorder (highly associated with MS) by opening veins?

I don't think there's a consensus on venous outflow obstructions being highly associated with MS, so I wouldn't go either way.

The study you guys talked about for like 2 weeks showed a high correlation between CCSVI and MS

Even the people who have personal experience (welcome to the club formyruca - nice reference by the way) are aware of the risks, but we've also read hours and hours of research ...

Narrowing is stenosis by the way, please refer to CCSVI.org

[Cece]

Also, my mom was "screened" for CCSVI almost a year ago. They found narrowing, but not stenosis.

A year ago is a long time, not as much was known then. And narrowing is suspicious. Was it at False Creek or maybe Buffalo?

CCSVIhusband, yes, that was the Beirut study, using the gold standard of catheter venogram, that showed 12 out of 13 people with late RR MS to have CCSVI as defined by some very narrow criteria.

[concerned]

I'm pretty sure I read Dr. Sclafani say that a narrowing is not necessarily a stenosis. The diagnosis said "Some narrowing, but no stenosis.", although, I'll give her that the diagnostician was not trained in the "Zamboni method".

[formyruca]

FWIW, my DUS screening only showed 1.5 of the 5 Zamboni criteria. The venogram proved differently. Not much different, I only had "narrowing" or "stenosis". What's the difference?

Thanks CCSVIHusband... glad to be on board.

[concerned]

CCSVIhusband - There were other presentations at ECTRIMS besides the Beirut study, that wasn't what I was talking about.

Weren't the Dutch and German studies presented as well?

[solney]

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.