DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby drsclafani » Sun Feb 24, 2013 4:05 pm

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: http://www.youtube.com/watch?v=AdRppJugimY


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.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
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Re: DrSclafani answers some questions

Postby 1eye » Mon Feb 25, 2013 10:40 am

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.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: DrSclafani answers some questions

Postby Robnl » Tue Feb 26, 2013 5:07 am

Hi Doc,

How was ISNVD 2013 in Poland?

Rgds,

Robert
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Re: DrSclafani answers some questions

Postby Anonymoose » Tue Feb 26, 2013 5:17 pm

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Last edited by Anonymoose on Sat Mar 16, 2013 5:17 am, edited 1 time in total.
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Re: DrSclafani answers some questions

Postby NZer1 » Tue Feb 26, 2013 9:06 pm

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
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Re: DrSclafani answers some questions

Postby pelopidas » Tue Mar 05, 2013 11:28 pm

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

keep walking! :clap:
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Re: DrSclafani answers some questions

Postby NZer1 » Tue Mar 05, 2013 11:36 pm

Happy Birthday Sal, from down under :)
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Re: DrSclafani answers some questions

Postby ljelome » Wed Mar 06, 2013 2:03 am

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 :-D
Warm regards,
Linda

|For the joy of the Lord is your strength | A cheerful heart is good medicine, but a crushed spirit dries up the bones| God always leads us to where we need to be, not where we want to be|
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Re: DrSclafani answers some questions

Postby Robnl » Wed Mar 06, 2013 3:03 am

Pfff..another year has passed :mrgreen: ...happy birthday Doc!!!! Keep up the good work
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Re: DrSclafani answers some questions

Postby newlywed4ever » Wed Mar 06, 2013 5:26 am

Happy Birthday and I hope we all get to see you enjoy many more!
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Re: DrSclafani answers some questions

Postby QueenMum » Wed Mar 06, 2013 8:16 am

Happy Birthday MH Dr. S!
Thank you for all you do for us! :YMHUG: :YMHUG: :YMHUG: :YMHUG: Love & Big hugs from Mum!
Have a fun day! :YMPARTY: :YMPARTY: :YMPARTY: :YMPARTY:
You are MH and our SuperStar!! (*) (*) (*) (*)
All the best to you always!
From Mum :-* :-* :-* :-* (and her Hubby)
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Re: DrSclafani answers some questions

Postby girl69 » Wed Mar 06, 2013 8:54 am

JOYEUX ANNIVERSAIRE !!! HAPPY BIRTHDAY !!! FROHEN GEBURTSTAG !!! To the best doctor ever, may your path continue to be a happy and never boring adventure :smile:
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Re: DrSclafani answers some questions

Postby tilde » Wed Mar 06, 2013 12:52 pm

Happy birthday from Norway Dr. Sclafani! And thanks again for all you do
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Re: DrSclafani answers some questions

Postby CureOrBust » Thu Mar 07, 2013 2:37 am

Happy Birthday and Best wishes!
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Re: DrSclafani answers some questions

Postby ErikaSlovakia » Thu Mar 07, 2013 2:56 am

Dear Dr. Sclafani!
Happy Birthday from Slovakia! Všetko najlepšie k narodeninám!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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