This Is MS Multiple Sclerosis Knowledge & Support Community

savouryourlife,
I'm so sorry hear that. I can imagine your frustration. I do remember reading somewhere on TIMS that your veins can collapse even while you're on the table. Some don't stay open at all.
I don't what to say to help you out other than thanks for sharing, stay strong and I hope something works out for you.
best wishes,
a

Thank you annad.

I will do it again as soon as they figure out 'stents'

At least I know, what to look forward to. I'm telling you those first 2 days were heaven. My thinking was crystal clear.
Unbelievable. No one could ever understand the clarity.
My thinking is always foggy and well, just plain dumb. I forget people's names as I'm talking to them...

So I'm praying that the answers to stents will come soon.

I am at a real loss here both emotionally and financially as I can't go back to Germany nor do I know if it would be worth it seeing how fast the vein collapsed, again.

I know you won't comment on this scenario as it wasn't your work. I just wanted to state that re stenosis can happen, almost immediately, following ballooning.

it is called elastic recoil or an insufficiently dilated vessel
i would be surprised if the lack of anticoagulation caused restenosis. It might cause thrombosis but not likely to cause restenosis.

Thank you Dr Sclafani, I think it is immensely important and encouraging to know that you and these key CCSVI scientists/experts cooperate and share their experience!

Indeed researching with passion for the same cause and all of you trying to help people with your latest knowledge of research (within the possibilities of the research framework each country permits) !
Thank you!!!

Well i have to tell you all that i learn as much from you as from anyone else. Finding out about thetwo day recurrent stenosis is very important.

I have been thinking about how to harness the energy and experience of patients on this site. I have fantasized about creating research measurement tools to learn about the subjective experiences after liberation. Imagine capturing the data and partnering on such a project.

what do you think?

I think we would all LOVE to be involved!

I have cooled off a bit after 24 hours of being told that what i am doing is research and thus requireds me to stop until i have had approval of the investigational review board at the hospital and the university. This happening three months after starting treating patients with the opinion of our IRB Chair that I was not performing research.

Ok, so it is a done deal and I cannot fight it without wasting valuable time that would probably not accomplish my goal.

So I will follow the boss' directive, grin and bear it and hope to get back in the saddle as soon as possible.

In the meantime, I thought it would very helpful to all of us to review the concepts of research and clnical practice and the value and the procedures by which IRBs work.

In the long run, it is important that all of us understand the concepts for so many reasons. I will try to inform and enlighten you about the process.


But first, for those who are hard of hearing.....I am not talking about hate, I am talking about eight......dinner at eight ........so lets eat.

What a list...even the "Golf, anyone?" has some truth to it...I imagine most doctors go into the business young and hungry but end up older and sated.

see what i mean....i am hungry and i am over 60

LOVE the idea of "partnering" liberation experiences! LOVE your passion and "hunger" Just like you WILL treat, I WILL get treated - responsibly and with as much education this brain of mine can absorb! Although I am on many lists to get treated, I'm holding out for you - despite the nagging thoughts of running out of wait time, my body is my temple and I want the best, meaning YOU! C'mon folks, send positive energy Dr. Sclafani's way - this is just a bump in the road....

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Dr. Sclafani ... please be sure to explain that an IRB is not a clinical trial necessarily (unless you're hoping to go that route) ...

I think there may be confusion between the two.

Yes ... welcome aboard Lyon.

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hey Doc,

Research for what? To see if its related to MS, this is a vascular issue. Or research to see if CCSVI can be done on veins? Which I believe ballooning is being done on veins daily around the world. Plus volumes of research has already been done on CCSVI. I am just tired of getting that word research thrown in are faces. Not directed at you. I understand you are just a messenger at this point and your hands are tied.

Why is there so much resistance to ensuring that MS Patients have adequate blood flow in their heads?

I have been thinking about how to harness the energy and experience of patients on this site. I have fantasized about creating research measurement tools to learn about the subjective experiences after liberation. Imagine capturing the data and partnering on such a project.

I really like this idea. The neurologists assess MS patients using the EDSS and FSS scores, but they are complicated and over-emphasize the ability to walk.

To gather subjective information from patients, a much simpler list of symptoms in a questionnaire with a numeric rating would be more effective I think. Something easy to fill out, for example using a scale from 1 to 5.

Once we have a tool like that, we could start gathering control data by having members of this forum rate themselves every month. We could plot the collective control data against the patients ratings who receive the liberation treatment. By keeping the symptoms separate, we would be able to see which are improved (or degraded) by the treatment. And, we could see how they change over time for both groups.

We have some of this type of information in the Tracking Thread. And we have some lists of common symptoms in other threads. Everything from cold feet to sensitivity to heat to cog fog could be listed and tracked in a standardized way.

Subjective data is not perfect, but much better than no data for anyone trying to make decisions on the effectiveness of CCSVI treatments.

Also, some items in the list could be objective, using measurable quantities such as blood pressure or times in the Boston marathon. Probably only the liberated ones would be running every year though.