DrSclafani answers some questions

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

Postby Cece » Fri Jul 15, 2011 9:05 pm

drsclafani wrote:the new avatar is me, a self portrait in the jungles of sulawesi at night photohunting tarsiers, the smallest primates......i sure do miss doing that stuff!!!

You can still have a full life....
CCSVI 24/7 358 days a year....
and a week off to photohunt ?

Great symposium so far. I really enjoyed it.
Cece
Family Elder
 
Posts: 9302
Joined: Mon Jan 04, 2010 4:00 pm

Advertisement

Postby CureOrBust » Sat Jul 16, 2011 6:30 am

Dr Sclafani,

From memory of reading your thread, I only remember reading about re-stenosis for re-treatment (or the same valve ect ect). In another thread you talked of how about three months ago you had some kind of epiphany with your understanding of what you were seeing/treating. On re-treatment, are the issues you are finding the 2nd time around directly (ie location wise) related to an issue you found the first time? or would of found had you known what you know now?
User avatar
CureOrBust
Family Elder
 
Posts: 3347
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby bestadmom » Sat Jul 16, 2011 7:37 am

Cece wrote:
drsclafani wrote:the new avatar is me, a self portrait in the jungles of sulawesi at night photohunting tarsiers, the smallest primates......i sure do miss doing that stuff!!!


You are photohunting every day. IVUS replaced your Canon.
User avatar
bestadmom
Family Elder
 
Posts: 722
Joined: Mon May 18, 2009 3:00 pm
Location: CT

Postby Cece » Sat Jul 16, 2011 4:41 pm

drsclafani wrote:
davmets2 wrote:I just got back from my 3 month follow up US from April 12th. It showed no flow in my LIJV. I think this probably occurred 3 weeks after my April 12th US and stopping Coumadin. The last couple months have been pretty rough...was put on solumedrol twice thinking it was an MS flare up.
Now I know it was from the vein clotting. My question is what are the chances of being able to stent this vein as this is what my doctor told me he wants to do.

Thanks


recanalizing a two month old clotted vein is difficult. Likely will not be possible but worth a try. i use ultrasound to search for partially recanalized vein so i have a working channel to push through. This is not easy for me to accomplish.

Davmets, how soon would you get in to be treated? Do you trust your doctor's expertise or experience with this? You clotted initially, too, didn't you? Do you know for sure that this more recent occlusion is from clotting (they can tell by the compressibility) or was that your assumption but it could be restenosis of the more regular and treatable kind? (I would really love if it turned out that way.) Have you been tested for hypercoaguability issues? If you had hypercoaguability, would your doctor reconsider using a stent? What about clotting made your doctor think a stent would be needed? Did your doctor mention the challenges with recanalization and that it is difficult to reopen such veins? Dr. Sclafani, if you were able to recanalize such a vein, would you then put a stent in as the other doctor is considering?

(did I ask too many questions? I want a good outcome for you, I am worried....)
Cece
Family Elder
 
Posts: 9302
Joined: Mon Jan 04, 2010 4:00 pm

Postby NZer1 » Sun Jul 17, 2011 4:25 pm

Thank you Dr. S., have been thinking about how to say this, so you will hear what a difference you make in the world and found this;

The Right Thoughts plus the Right People in the Right Environment at the Right Time for the Right Reason = the Right Result

I appreciate what you have done for us,
Regards
Nigel
User avatar
NZer1
Family Elder
 
Posts: 1623
Joined: Thu Feb 18, 2010 4:00 pm
Location: Rotorua New Zealand

Postby drsclafani » Sun Jul 17, 2011 9:45 pm

CureOrBust wrote:
drsclafani wrote:it was three months ago that i "got it!". i believe that IVUS makes my procedure more rational to me and this shows in the results
i believe i am seeing a higher percentage of patients with improvements and a reduction in thromboses and other complications

its too soon to tell whether there is better durability of the angioplasty
Ignoring the durability, could you put a rough number on the percentage of patients who say they notice improvements as compared to those which say they notice no change in their MS?
70%positive
30 percent no improvements

but not all symptoms
User avatar
drsclafani
Family Elder
 
Posts: 3180
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

A big thank you!

Postby dlb » Mon Jul 18, 2011 7:42 pm

I would like to let everyone know that our good doctor has had a very long and challenging day. I was his third patient today and I have just arrived back at Hotel leBleu. I believe he left the clinic around 10 pm. He is a prince among men! I was actually scheduled to arrive at the clinic for 1 pm but a couple of us put him through his paces today. A very long day after a busy weekend for Dr. Sclafani. Thanks again to you and your wonderful staff, doctor!
Just wanted to add that you are welcome to share and discuss my procedure here if there was anything of interest for the forum.
Deb
Last edited by dlb on Tue Jul 19, 2011 10:26 am, edited 1 time in total.
User avatar
dlb
Family Elder
 
Posts: 202
Joined: Sun Nov 22, 2009 4:00 pm
Location: Didsbury, Alberta Canada

Postby Cece » Mon Jul 18, 2011 8:23 pm

Deb, I was thinking of you today, hope you are resting and recovering and feeling well! I enjoyed talking with you at the symposium.
Cece
Family Elder
 
Posts: 9302
Joined: Mon Jan 04, 2010 4:00 pm

Postby Music » Mon Jul 18, 2011 9:12 pm

Hi Deb,

I'm glad that everything finally lined up for you and you were able to make your way to New York for the surgery. Rest up and take care!!
User avatar
Music
Family Elder
 
Posts: 104
Joined: Fri Aug 20, 2010 3:00 pm
Location: Calgary, Alberta, Canada

Postby Cece » Tue Jul 19, 2011 4:38 pm

There has been some discussion that one of the things that needs to be determined is who to treat (and, by extension, who not to treat). If studies show that pwPPMS do not get benefits from the procedure, would doctors stop doing it for pwPPMS? What if pwPPMS do not get other improvements but get QOL benefits?
Cece
Family Elder
 
Posts: 9302
Joined: Mon Jan 04, 2010 4:00 pm

Postby jgalt2009 » Tue Jul 19, 2011 5:31 pm

Cece wrote:What if pwPPMS do not get other improvements but get QOL benefits?

What if there are no overt improvements, but disease progression is decelerated or abated?
User avatar
jgalt2009
Family Member
 
Posts: 25
Joined: Thu Jun 09, 2011 3:00 pm
Location: Florida

Postby Cece » Tue Jul 19, 2011 5:38 pm

good point, jgalt.

Maybe the discussion of when to treat or when not to treat is meant to be in terms of CCSVI, not MS?

Treat:
* valvular stenoses over a certain percentage?
* renal vein

Not treat:
* hypoplasias
* vertebral veins
* upper lesions that expand and are therefore not stenotic
* sinus abnormalities (refer to neurointerventional radiologist)

?
Cece
Family Elder
 
Posts: 9302
Joined: Mon Jan 04, 2010 4:00 pm

Postby drsclafani » Tue Jul 19, 2011 6:46 pm

Cece wrote:
drsclafani wrote:i have thought about traversing the dural sinuses to go from one side to another. At the current time, I consider this to be beyond my technical expertise. I would seek the assistance of a interventional neuroradiologist who has experience with this treatment. I would imagine that this would be unlikely to be successful.

That seems wise.
Although I wish there was a interventional neuroradiologist convinced of the merits of ccsvi and knowledgeable of our particular issues. All in good tme, I suppose, and as the research comes in.

Any interesting cases lately?
User avatar
drsclafani
Family Elder
 
Posts: 3180
Joined: Fri Mar 12, 2010 4:00 pm
Location: Brooklyn, New York

Postby Cece » Tue Jul 19, 2011 8:22 pm

Any interesting cases lately? :D

I am sure you have more to say about the symposium as well?
Cece
Family Elder
 
Posts: 9302
Joined: Mon Jan 04, 2010 4:00 pm

Postby ozwannabe » Wed Jul 20, 2011 10:41 pm

Cece wrote:Any interesting cases lately? :D

I am sure you have more to say about the symposium as well?


Yes please. More input. Absolutely no pressure :)

Cheers,
Vicki
User avatar
ozwannabe
Getting to Know You...
 
Posts: 16
Joined: Fri Dec 31, 2010 4:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service