This Is MS Multiple Sclerosis Knowledge & Support Community

Cece wrote:Dr. Sclafani, Medicare has sent a letter to Dr. Mehta's group in Albany that clearly denies coverage for CCSVI testing and treatment. It's thought that this will apply to other providers as well. The letter is here:
http://www.thisisms.com/ftopicp-145010.html#145010

Your thoughts? Is this as bad of a development as it seems?

I have received your Octover 21, 2010 letter requesting coverage and billing for the performance of venograms and venoplasties in patients with multiple sclerosis (MS) .

bluesky63 wrote:Good morning Dr. Sclafani. I hope that in the middle of everything else you and your amazing staff find some time to catch some rest. I am overwhelmed by your commitment and Holly's dedication.

I had an initial procedure during the summer and felt great for a while, then had symptoms return, although not as severe as before the procedure. (I would say I went from 7.5 EDSS before down to almost 6 right after and now back to hovering between 6.5 and 7.)

The doctor said elastic recoil was most likely. But I got the impression that one of these veins might be just too small in the first place? I am easily confused and I have to admit that even though I asked for several different ways to explain it I didn't really understand what he was saying.

I hope this is the relevant image. (I have a whole disk, but I can't open it because my little computer doesn't have an external drive, so this is the best I could do.) What are all those veins? Is the skinny one on the lower left anything important? That's what I couldn't figure out. I know the curvy thing on the top is the azygous.

Maybe I could send the actual disk since I am on your list for the future for a repeat.

Thank you for any insight, and for everything else.

drsclafani wrote:

David1949 wrote:Dr. Sclafani
Like everyone else here I am delighted to hear you will soon be back in business and that AAC clinics around the country will soon be offering treatment for CCSVI. Will the doctors doing the procedure at the AAC clinics be trained by you?

these are all highly experienced physicians. i have been training for some time. Many will be visiting with me when i do procedures.

all the procedures will be reviewed complications witll be analyzed. negative outcomes will be scrutinized. all patients will be be placed in our own internal registry

drsclafani wrote:

elliberato wrote:thanks Cece

Dr S,
I have had MS 4 years (who really knows) at least thats when diagnosed. n Secondary progressive. No fatigue issues, no cognitive issues, duh I think, seriously all my activity in my t,c,l spine. Spasticity and stiffness horrible to point where i am not walking without assistance. THink Liberation may help me or is it just to hypothetical?

unpredictable in SPMS

drsclafani wrote:...negative outcomes will be scrutinized...

drsclafani wrote: all patients will be be placed in our own internal registry

Kleiner wrote:Dr. Sclafani,

You were kind enough to translate my ultrasound report a month or so ago and now I need some advice. I know that you can't tell me what to do but just wanted to get your opinion on the current state of affairs. I currently have a mild case of MS (if there is such a thing), mostly just dizziness, headaches, fatigue and some minor cognitive issues, my mobility has yet to be effected and I can pretty much get through my days without too much trouble. My issue is, should I have the procedure performed now or would the more prudent decision be to wait and see what some of the studies show? I know it is a personal decision but just thought you might have a little more insight into the risks of waiting a little longer vs. having the procedure performed now. I am in Canada so would be travelling to the US and paying out of pocket, that being said I have no problem finding the money to do it, to take the chance. I appreciate any advice you may have for me and I am so glad to hear that you will be back in action in January!

David1949 wrote:

drsclafani wrote:

David1949 wrote:Dr. Sclafani
Like everyone else here I am delighted to hear you will soon be back in business and that AAC clinics around the country will soon be offering treatment for CCSVI. Will the doctors doing the procedure at the AAC clinics be trained by you?

these are all highly experienced physicians. i have been training for some time. Many will be visiting with me when i do procedures.

all the procedures will be reviewed complications witll be analyzed. negative outcomes will be scrutinized. all patients will be be placed in our own internal registry

Based on the answers you've given to questions on this website, as well as your experience with CCSVI treatment, I would be quite comfortable about putting my life in your hands. I don't think I'd feel that way about a doctor I now nothing about. So it's good to know that they've gained some of your experience and knowlege.

elliberato wrote:

drsclafani wrote:

elliberato wrote:thanks Cece

Dr S,
I have had MS 4 years (who really knows) at least thats when diagnosed. n Secondary progressive. No fatigue issues, no cognitive issues, duh I think, seriously all my activity in my t,c,l spine. Spasticity and stiffness horrible to point where i am not walking without assistance. THink Liberation may help me or is it just to hypothetical?

unpredictable in SPMS

are the other categories more predictable??

Cece wrote:

drsclafani wrote: all patients will be be placed in our own internal registry

This is a big point too - data on all patients from all AAC clinics go into the registry. Lots of data for Dr. Sclafani to process and publish on.

That's not really a question, sorry. But it is exciting.

drsclafani wrote:

Kleiner wrote:Dr. Sclafani,

You were kind enough to translate my ultrasound report a month or so ago and now I need some advice. I know that you can't tell me what to do but just wanted to get your opinion on the current state of affairs. I currently have a mild case of MS (if there is such a thing), mostly just dizziness, headaches, fatigue and some minor cognitive issues, my mobility has yet to be effected and I can pretty much get through my days without too much trouble. My issue is, should I have the procedure performed now or would the more prudent decision be to wait and see what some of the studies show? I know it is a personal decision but just thought you might have a little more insight into the risks of waiting a little longer vs. having the procedure performed now. I am in Canada so would be travelling to the US and paying out of pocket, that being said I have no problem finding the money to do it, to take the chance. I appreciate any advice you may have for me and I am so glad to hear that you will be back in action in January!

one could argue that the symptoms you describe, fatigue, headaches, dizziness and minor cognitive issues, may be symptoms of CCSVI rather than the MS. What does your MRI show?