Brooklyn Experience

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

Brooklyn Experience

Postby newlywed4ever » Sun Jan 30, 2011 12:53 pm

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!
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Postby hopeful2 » Sun Jan 30, 2011 1:53 pm

newlywed4ever, it's good to hear about your experience. Thanks for the details. How is your energy level? I was super tired for the first few days post procedure. Please give updates when you feel like it. :)

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Postby Cece » Sun Jan 30, 2011 2:01 pm

It helps to know what the cab costs might be!

Did he give you any options for what could be done with that left jugular? At this point is there any chance that it will recanalize? Is thrombolysis not worth the risk? It is so hard to hear of clotting outcomes, you have plenty of company and I wish it wasn't happening to anyone. Although I am still encouraged that you have 2 out of 3 wide open. That has got to help!!

Take it easy, enjoy the city, and post more as you can!!! :D
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Postby AlmostClever » Sun Jan 30, 2011 2:24 pm

Congrats on your procedure and here's to recovering well!

Did you say that after attempting to go in the left side, Dr/ S. had to quit and go through the right?

Do you have a closed left iliac that preventedthe passage of the catheter or perhaps the balloon?

Rest up!
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby newlywed4ever » Sun Jan 30, 2011 5:01 pm

Before I forget...just got back from the Tuscany restaurant (87th St & 3rd Ave) and had one of the best meals of my life!! If you get the chance, go!

AlmostClever - I believe it was the L iliac that went up, then a tight U-turn down, then a tight U-turn up. I do recall Dr Sclafani saying "oh, my God" 8O BTW, this is OK for me to hear such comments...I'd rather hear the chatter than nothing at all. So yes, he tried to go in from the left but ended up going in from the right.

Hopeful2 - yeah, I've been wiped out since the procedure 2 days ago. Didn't expect to be since I seemed to have extra energy after the first time. Dr Sclafani (who's a big jazz fan) had made reservations for us at one of his favorite places for good jazz on Sat night but I had to cancel the reservations because I just didn't have the energy :( :(

Cece - Dr Sclafani didn't offer any options as to how to address the left jugular. He did, however, spend alot of time there trying to figure things out; called in another colleague, did ultrasound, etc. He also made the comment that sometimes it's hard to tell which veins are which and it's possible that Dr Siskin ballooned a collateral. He had nothing but good to say about Dr Siskin so this was not a criticism. Can't help but wonder if there will be a "fix" in the future...
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ccsvi

Postby blossom » Sun Jan 30, 2011 8:34 pm

sorry to hear you had to go through this twice and still have an unresolved issue. but, on the upside, you did get treated by one of the best.

hopefully, you will be seeing improvements soon. rest and heal.
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Postby NormB » Mon Jan 31, 2011 9:08 am

Congrats NewlyWed,
I hope with time you will find improvements.

Btw regarding Taxis in Brooklyn. There is a group called
Family Car Service. They are good as our driver was part of
a subgroup which they arrange within themselves to have a cab to go
and then back. Just call Rafael at 347 998-8898 his cell#
and he has a friend called Fray where they will look after you
even with wheelchair as they operate small vans.
Their fares were the lowest we could find in hte area.

Good Luck and take care All
'92 diag RR - '05 SP
On LDN since Sept. 2012 with better quality of life.
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Postby Drury » Tue Feb 01, 2011 9:01 pm

Congrats newlywed - thank you for updating us and hope you see lots of improvements.

All the best,
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Postby newlywed4ever » Tue Feb 01, 2011 9:04 pm

Drury - good to see your name again on a couple posts!
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Postby newlywed4ever » Thu Feb 03, 2011 8:49 am

Check out http://bedbugregistry.com/search/hotel/l:brooklyn-NY/

Bedbug registry for Brooklyn - Hotel LeBleu is not on the list.
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Postby newlywed4ever » Fri Feb 04, 2011 5:50 pm

I've had a couple inquiries re: Arixtra. My twenty days worth would've cost about $1650 w/o insurance at Walgreens. However, because I hover right around weighing 110 lbs, the script was for 2.5 rather than the "usual" 5.0. I have seen other posts that mentioned $2500. If my insurance didn't cover Arixtra, Dr Sclafani would give me the option of Lovenox (don't know cost but it's less expensive). Don't worry about the needle - it's tiny and maybe about 3/4" long; doesn't hurt!

No improvements but it's only been 7 days and I have one helluva cold!
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Postby newlywed4ever » Wed Feb 09, 2011 7:37 am

One more note on Arixtra; it has to be kept at room temperature and I had no problem with TSA/airline personnel having it in my carry-on.
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