This Is MS Multiple Sclerosis Knowledge & Support Community

Cece wrote:I did a search for news on ISNVD 2013, which is currently underway, and I found nothing, nada.
#sad
However an interview with Dr. Sclafani at ISNVD 2012 popped up:

we are havng quite animated discussions about how to proceed. lots of reviews of the recent crop of papers. thinking of ways to generate funding for procedureal trials.

unfortunately, no one here from california, upstate new york,or the interventionalists participating in the canadian trials, that is pretty frustrating.

we proceed but we need funding to really do what is necessary.

Funding... That's nothing. For pwCCSVI proceeding is sometimes not even possible...

Actually I was going to ask you something: what regime do you use for anti-coagulation lately? Do you expect that to change soon?

My experiences with that:

1. was on Plavix for one year after my heart-attack related angio, where 3 stents were used. I bruised a lot then because I had not had the procedure, and I probably tried to do more than I should have, a few years ago. I'm learning. Anyway for whatever reason, every bump or fall made a bad bruise.

2. was on Plavix for 1 month following procedure for CCSVI in 2010.

3. since heart incident of early 2009 have taken 1 aspirin/day, initially regular adult size, but cut back to baby size because I thought I must be getting nosebleeds from the dry air in winter, combined with a blood thinner. If I was right, I will not have them this winter. I will go back to the adult size in May if that works.

What I want to know is, since length of treatment seems to matter, are we paying that any attention? I hope my heart stents keep working. I don't know if you get clots with arterial stenting and it must be different for veins.

I have heard of everything from none to coumadin for life.

Hi Doc,

How was ISNVD 2013 in Poland?

Rgds,

Robert

.

Hi Dr S.

Have there been any studies on valves over time? Valves that have not been touched/PTA'ed to see if there are any changes in their performance or function?

Separate question;
If after PTA the valve re-stenosis' then is it valve related or incomplete destruction of valve and annulus or is it another area that was previously unseen or missed?

I am wondering if there may be an issue with the valves and that thickening or generally non functioning valves may be changing over even short periods of time eg the 're-stenosis' average after PTA.

If for instance in normal life the function of the valve waxes and wanes like MS does!

Diet changes and medications seem to alter the relapse rate and in some even halt progression, so could that mean the flow has improved without PTA?

It is mysterious how this disease is fluctuating in two scenarios, one to a healthy lifestyle (change) and two with PTA and both are very similar outcomes symptomatically ;)

Now that White Matter lesions are found to be less connected to MS disease symptoms there may at last be a shift to measuring actual symptoms! This 'should' help find the tools to measure PTA benefits with a 'real' assessment.


Nigel

happy birthday Dr Healer!
you really helped me restart my life

keep walking!

Happy Birthday Sal, from down under

Dear dr. Sclafani,
Happy birthday...wishing u a happy life, great health, great success with ccsvi, n may God's blessings overwhelm u n ur family.
Thank u for ur kindly help. And may God lead u in ur field so u can do many wonderful things with ur talents.
Is ur birthday on 5th or 6th march?...guess what? mine is tomorrow.
GBU

Pfff..another year has passed ...happy birthday Doc!!!! Keep up the good work

Happy Birthday and I hope we all get to see you enjoy many more!

Happy Birthday MH Dr. S!
Thank you for all you do for us! Love & Big hugs from Mum!
Have a fun day!
You are MH and our SuperStar!!
All the best to you always!
From Mum (and her Hubby)

JOYEUX ANNIVERSAIRE !!! HAPPY BIRTHDAY !!! FROHEN GEBURTSTAG !!! To the best doctor ever, may your path continue to be a happy and never boring adventure

Happy birthday from Norway Dr. Sclafani! And thanks again for all you do

Happy Birthday and Best wishes!

Dear Dr. Sclafani!
Happy Birthday from Slovakia! Všetko najlepšie k narodeninám!
Erika