My Two Year Follow-Up with Dr. Sclafani

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

My Two Year Follow-Up with Dr. Sclafani

Postby Needled » Mon Apr 09, 2012 3:54 pm

So I thought I'd just share a success story -- 2 years and counting, fingers crossed. I was originally treated by Dr. Sclafani on February 24, 2010. Dr. S. found a large collateral vein in my RIJV, which was the result of a horizontal septum that almost totally blocked blood flow. The septum was ballooned and flow resumed. There also seemed to be an issue with my LIJV but we weren’t sure of its significance so we decided not to treat it at that time. After consulting with Dr. Zamboni, Dr. S. recommended another procedure to treat the LIJV. By the time my appointment date came around, Dr. S. had been stopped by Kings County. I finally had my second procedure with Dr. S. at American Access Care on May 6, 2011. The LIJV was treated as well as all other areas checked again. The RIJV was still clear, 14 months after the initial procedure.
After the first procedure, my fatigue lessened, sensation and warmth came back to my feet, I walked better and I generally felt better. After the second procedure, I noticed a marked improvement in leg strength, balance, stamina and mental acuity. I continued to improve until December, when the cooler weather hit. But this is my usual M.O. It feels like someone hits the pause button, and as the warmer weather approaches I hope and expect to continue improvements since spring and summer are my best times of year. Unlike most MS/CCSVIer’s, I don’t do as well with the cold weather and look forward to the warm weather. One area that wasn't affected by either procedure was my sensitivity to weather, especially cold weather.
Last week I had a follow-up Doppler, and all is still well. The RIJV remains patent, 25 months after initial treatment. The LIJV is also doing well. Both have a bit of reflux but it is not material and since I’m feeling well and have held onto my improvements, we have no plans for another procedure at this time.
Dr. S. also did a neurological exam, as he did before my second procedure. My husband and I think he does a better and more thorough exam than any neurologists I’ve been to. He even sounds like a neurologist, and in this case I don’t mean that as an insult :wink:
Dr. S., thank you for all you’ve done for us. For being the only doctor who took up our cause when BestAdMom emailed over 100 doctors in the Northeast in October 2009, for continuing to stick with us and for being a leader in the field. You’re the best!
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Re: My Two Year Follow-Up with Dr. Sclafani

Postby Cece » Mon Apr 09, 2012 5:22 pm

Congrats, Needled!!
2 years out already!
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Re: My Two Year Follow-Up with Dr. Sclafani

Postby Needled » Wed Apr 11, 2012 3:55 pm

Thanks Cece.
I should have mentioned that as part of Dr. Sclafani's scheduled protocol, I also had a Doppler check-up in August 2011, three months after the second procedure. The findings were the same as last week. Both veins patent, with some reflux but in light of how well I was feeling, there was and is nothing to do. I'll go back in a year for my next follow-up.
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Re: My Two Year Follow-Up with Dr. Sclafani

Postby Thekla » Thu Apr 19, 2012 1:54 pm

Awesome! Congratulations to you both! You both deserve our recognition. You were the instigator that emailed all of those doctors looking for a hero and Dr Sclafani is more than our hero now, he's our rock star!
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Re: My Two Year Follow-Up with Dr. Sclafani

Postby Needled » Thu Apr 19, 2012 3:03 pm

Hi Thekla,
Thank you. I’m happy to be an instigator, but there were three of us – BestAdMom, Javaneen and me. It was a combined effort. We each emailed the doctors on a list mostly created and maintained by BestAd. And Dr. S. responded to BestAd’s email, so she’s should get the recognition. Along with Dr. S, of course. He’s awesome. :-D
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Re: My Two Year Follow-Up with Dr. Sclafani

Postby PointsNorth » Thu Apr 19, 2012 4:43 pm

I concur that Dr. S does the most thorough neurological exam! Its nice to hear of your success.
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-
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Re: My Two Year Follow-Up with Dr. Sclafani

Postby magoo » Sat Apr 21, 2012 2:36 pm

I am so happy to read your update! Congrats to you!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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