DrSclafani answers some questions

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

Postby catlady » Thu Dec 02, 2010 6:32 am

Hello there,

I don't understand my doppler test report, and the images look like jibberish! I have some specific questions, however, I don't really understand much about the report at all.

Specifically, does a 2/5 ccsvi criteria rating indicate that the blockages are minor?
How is it possible that my Right IJV is 7.2mm and the left is 39.2mm? That is such a big difference!


I posted my test results on a different thread hoping someone can shead some light
http://www.thisisms.com/ftopicp-145112.html#145112

I greatly appreciate your time and patience!
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Postby Cece » Thu Dec 02, 2010 7:47 am

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?
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Postby bluesky63 » Thu Dec 02, 2010 9:05 am

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. :-)
Last edited by bluesky63 on Sat Jul 23, 2011 11:40 am, edited 1 time in total.
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Postby drsclafani » Thu Dec 02, 2010 11:41 am

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?


where does it deny ccsvi?

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) .


who is treating MS?
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Postby drsclafani » Thu Dec 02, 2010 11:42 am

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. :-)

Image


its a pretty common pattern, a dominant distal azygos vein. i dont think this warrants treatment
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Postby Kleiner » Thu Dec 02, 2010 12:23 pm

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!
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Postby David1949 » Thu Dec 02, 2010 2:09 pm

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.
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Postby elliberato » Thu Dec 02, 2010 3:36 pm

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??
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Postby CureOrBust » Thu Dec 02, 2010 4:19 pm

drsclafani wrote:...negative outcomes will be scrutinized...
Thats the point that would make me the most comfortable with being treated by a specific Dr I did not know of.
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Postby Cece » Thu Dec 02, 2010 7:27 pm

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. :D

That's not really a question, sorry. But it is exciting.
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Postby drsclafani » Thu Dec 02, 2010 7:56 pm

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?
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Postby drsclafani » Thu Dec 02, 2010 7:58 pm

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.


i think this is a steep learning curve. Someone showed me a case today and i missed completely the azygos problem. went right by it.
feel kind of silly actually
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Postby drsclafani » Thu Dec 02, 2010 8:00 pm

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??

i think, unproven, that the less nerve damage the better the likelihood of improvement, but the range of improvements is not exclusive of any classification at this point

besides if you are a PPMS with EDSS 9 and you get finger movement, that is huge!
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Postby drsclafani » Thu Dec 02, 2010 8:02 pm

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. :D

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



there will be no publishing or sharing data outside the organization until irb approval
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Postby Kleiner » Thu Dec 02, 2010 8:13 pm

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?



My most recent MRI shows 5 or 6 lesions. I also had a lesion on my spine that was causing severe tingling from the middle of my back to my toes but this lesion got progressively smaller over my past 3 MRI's and I no longer have the tingling sensation. The more I have been reading and comparing my symptoms I have wondered many times if I have MS at all...or maybe I have "CCSVI" or some other issues that mimic MS symptoms. Forgot to mention, I also have central sleep apnea...chalk up another symptom for blood flow issues!

The more I think about it the more I think I need to get this done...just a little scary stepping into the unknown!
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