This Is MS Multiple Sclerosis Knowledge & Support Community

aam

Not again........
I was in Dr Dake's calnder for one week after Stanford did shut down the procedures and now scheduled with Dr Siskin for Nov 24, here we go again

I hope that's not the case.

brave

this is very upsetting . i can't travel far

When I spoke with somoeone from the clinic I asked if the procedure was in jeopardy of being stopped, like Dr. Dake's. I don't exactly remember the reasoning/wording, but I do remember being told it wasn't an issue. I believe because it's a private clinic. Like I said, not 100% sure, but I did ask and felt reassured. Hope that helps.

I thought the FDA was food and drug.
Gadolinium is the only thing I could that might involve the FDA.

DARN DARN DARN..................I have an appointment in min November!

You ALL do realize this doctor works on other things than CCSVI? It could just be he has a meeting that day with the FDA about another thing ... (or the entire hospital could have meetings with the FDA) ...

Methinks you're working yourselves up over nothing ...

Hello all,

Does anyone know any more about the treatment in Az? How many patients have they treated? What is the cost? I will email Heidi but thought to see here first if there is more info available.
Also, there is another post here about the facility in Phoenix, are these the same place?
Anyone know anything about Dr. Michael Lavor?

Help.

zina

2[quote][/quote]

going for treatment in Rhode Island tomorrow. So far all my interaction has been very positive. Will post more when completed.

Ann

SofiaK wrote:...

FDA also governs stents. It's just the stents that I can think of that the FDA might intervene.

I was hit with airline cancellation fees last spring, but was spared hotel fees at least. Hope he reschedules you soon.

Hi
does anyone knows the follow up schedule for procedures done in Albany?
after how long you should go bback there and how many times?

Thanks,
brave

Brave,

This link is from Community Care in the FAQ section. Question 13 talks about follow up.

http://www.communitycare.com/Practices/ ... VI_FAQ.asp

Cece wrote:

SofiaK wrote:The ONLY reason that I posted the not-so-good news is that Dr Siskin 's office re-scheduled my appointment at his clinic as he will be going and talking about MS to FDA. I was hoping that others would avoid hotel late cancellation fees.

I really hoped someone might know something more. I'll post when I learn more. Maybe drugs are being made for CCSVI??

FDA also governs stents. It's just the stents that I can think of that the FDA might intervene.

As long as the stents are approved for some use, e.g. cardiac or billiary stents, then how the dr. uses them is generally not an FDA issue. However they may be approving studies and their expert panels may want to know more in order to evluate the studies,

My discharge papers said Doppler at 3, 6 and nine months. I am having my followup locally.

Anyone interested in learning more about CCSVI, PLEASE consider attending the Center for Vascular Awareness Roundtable meeting in Albany NY on 11/10/2010.

Dr. Michael Lenihan, Dr. Michael Dake, Dr. E. Mark Haacke, Dr. Manish Mehta, and patients who have received CCSVI treatment will be speaking. FREE TO THE PUBLIC!

This is a very important meeting and will be informative! All are invited, patients, healthcare workers, and anyone who may want to learn more about CCSVI are encouraged to attend!

Please visit www.vaware.org and contact Sharon Cillis at 518-452-1048. Also, if you are interested in attending (or know someone who is) please rsvp at rsvp@vaware.org.

Thanks!!