Brooklyn Experience
Posted: Sun Jan 30, 2011 11:53 am
Background on me: PPMS dx 2000 (never had RRMS); first CCSVI treatment in Albany 8/5/2010; 2nd procedure in Brooklyn 1/28/11.
I am currently in Brooklyn after seeing the good Dr on 1/28. As I had posted elsewhere on TIMS, I was more worried about navigating around a big city (my home is in the U.P. of Michigan) than I was the procedure But with the help of folks on the forum, my worries were for naught. We have found the people here extremely friendly. We are not staying at Hotel LeBleu (just could not justify the $$) and are here at Best Western Gregory - about 8 miles from AAC. I walk with a cane but there are tons of eating places, shops, etc. within walking distance. The drawback was cab fare a total of 4 times to and from AAC - which would cost $10-18 each time.
Dr Sclafani and the AAC staff were OUTSTANDING! There was some dysfunction with communication prior to coming here but I chalk that up to this being new for AAC and they have had to incorporate new staff with "old". My most perplexing problem was that "billing" wanted me to self pay and I will have to submit the bills to my insurance co. although my insurance told me twice that the dx & tx codes are all covered w/o prior authorization. I hope that I will have no problems submitting and getting reimbursed since I charged $10,000 on my credit card.
The procedure showed some unexpected things. Since I had my first procedure, I was sure I had simply (ha!) restenosed. I was told in Albany that I had the "worse M-T syndrome" he had ever seen but he was still able to go in from the L groin. Dr Sclafani does not believe it's classified as M-T but there is a problem with anomalies/malformed veins. He had to go in from the right side. So onward & upward to RIJV which Albany found no problem with. Dr Sclafani found a problem with the valves which were ballooned. Albany found LIJV to be completely blocked and ballooned base; Dr Sclafani found the LIJV to be completely clotted and could not get wire/catheter through Albany found "mild" azygous problem and treated/ballooned; Dr. Sclafani found azygous valve problems and ballooned. I do not yet have the written report so this is what I understood verbally. My hubby (who is not well versed in CCSVI) was told that I have 2 out of 3 highways open. The first procedure was completely painless; this time was quite painful at times - which I'm hoping is a good thing!
I adore Dr Sclafani and am very glad I came here. I do not (yet?) have any noticeable improvements (I did after the first procedure but lost them). Regardless, there was still CCSVI and it was treated by the BEST!
I am currently in Brooklyn after seeing the good Dr on 1/28. As I had posted elsewhere on TIMS, I was more worried about navigating around a big city (my home is in the U.P. of Michigan) than I was the procedure But with the help of folks on the forum, my worries were for naught. We have found the people here extremely friendly. We are not staying at Hotel LeBleu (just could not justify the $$) and are here at Best Western Gregory - about 8 miles from AAC. I walk with a cane but there are tons of eating places, shops, etc. within walking distance. The drawback was cab fare a total of 4 times to and from AAC - which would cost $10-18 each time.
Dr Sclafani and the AAC staff were OUTSTANDING! There was some dysfunction with communication prior to coming here but I chalk that up to this being new for AAC and they have had to incorporate new staff with "old". My most perplexing problem was that "billing" wanted me to self pay and I will have to submit the bills to my insurance co. although my insurance told me twice that the dx & tx codes are all covered w/o prior authorization. I hope that I will have no problems submitting and getting reimbursed since I charged $10,000 on my credit card.
The procedure showed some unexpected things. Since I had my first procedure, I was sure I had simply (ha!) restenosed. I was told in Albany that I had the "worse M-T syndrome" he had ever seen but he was still able to go in from the L groin. Dr Sclafani does not believe it's classified as M-T but there is a problem with anomalies/malformed veins. He had to go in from the right side. So onward & upward to RIJV which Albany found no problem with. Dr Sclafani found a problem with the valves which were ballooned. Albany found LIJV to be completely blocked and ballooned base; Dr Sclafani found the LIJV to be completely clotted and could not get wire/catheter through Albany found "mild" azygous problem and treated/ballooned; Dr. Sclafani found azygous valve problems and ballooned. I do not yet have the written report so this is what I understood verbally. My hubby (who is not well versed in CCSVI) was told that I have 2 out of 3 highways open. The first procedure was completely painless; this time was quite painful at times - which I'm hoping is a good thing!
I adore Dr Sclafani and am very glad I came here. I do not (yet?) have any noticeable improvements (I did after the first procedure but lost them). Regardless, there was still CCSVI and it was treated by the BEST!