Cece's turn

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

Postby PCakes » Sat Jan 29, 2011 5:20 pm

flipflopper wrote:Cece,

I have been pretty quiet lately and I do not post much anymore but I had to log in to wish you the best of luck (but you probably don't need luck if you are being treated by Dr S, you are in very good hands)!


ditto :wink:
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Postby Cece » Sat Jan 29, 2011 9:04 pm

Countdown: 14 days away

That is exactly two weeks.

No wrenches in the plans as of yet.

I've filled out some information on my supplements to send in. I checked with my insurance about the Arixtra and there is no quantity limit, so I should be able to get the 40 doses of 2.5 mg Arixtra. I am happy about that.

From my MRV results and ultrasound, it looks as if I have stenoses in both jugulars and, as seen in the MRV, something going on in the azygous that is causing reflux. I know what is seen in the catheter venogram will be the real test. But if the pre-imaging is accurate, there will be at least those three areas to be ballooned. If each of the three areas has a 50% chance of not restenosing, then what is the math for what my chances are of having at least one stay open and not restenose? I work it out as being 7/8ths or 87.5%. Those are good odds.

But then again the azygous shouldn't be in that equation. It is likely to stay open anyway if the research from Zamboni holds true. And it's the blockages in the jugulars that are likely causing my fatigue issues. So the odds of at least one of two jugulars that are ballooned staying open might be 3/4ths or 75%.

Now if there's more than one issue in a single jugular, then the math gets even funkier and I had better give up. I am getting closer to my treatment date by the minute.

Can you believe it. I've waited many, many months. (Many, many….) When I first got on Dr. Sclafani's list, he was just about to become the only doctor openly treating in the US. He was not yet posting on TIMS, I did not know him from any other doctor out there. That soon changed. But a month after I got on Dr. Sclafani's list, the IRB intervened, and there were no doctors openly treating. A month later, in May, with Dr. Sclafani still working through the IRB process, Dr. Siskin of Albany became the only doctor openly treating in the US. I managed to resist going with Dr. Siskin. It is hard to give up on a doctor like Sclafani.

But the temptations increased. I did not want to go with the excellent Dr. Siskin, did I want to go with Dr. Arata? He was using the bigger balloons that I wanted…. I did not go with Dr. Arata. Did I want to go with Dr. Sullivan in Atlanta? He was part of Dr. Sclafani's group, he was conservative about the use of stents. I did not go with Dr. Sullivan. But maybe I'd want to go with a doctor who was even closer? How about Chicago? No? Ok, how about a doctor right here in Minneapolis?

And then just in time, at last the wait is over, and I will be able to be treated by Dr. Sclafani after all.

I may have missed out on getting treated sooner if I had just gone for it, but over those many months we learned much more about the possible complications of the procedure. I chose Dr. Sclafani for many reasons: he considers stents too dangerous and I agree; he uses IVUS and gives each patient a thorough workover; he uses a true anticoagulant and I have read too many stories of clotting in the jugulars; he is intuitive at what he does and experienced with angioplasty and one of the few CCSVI experts out there. I chose him because I know him from TIMS and, yes, admittedly, I adore him. But I also chose him at complete random, because bestadmom emailed me his name and said he was treating CCSVI and that he was good.

Fourteen days until, at last, I find out if she was right. ;)
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Postby 1eye » Sat Jan 29, 2011 9:35 pm

God speed, Cece. And Esvee. Andeye too.

-Chris
"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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Postby CenterOfGravity » Sat Jan 29, 2011 11:17 pm

Cece, best of luck to you. I've been following all this for quite some time, and making a decision about which doctor is a big decision. That's the place I am now. I'm a New Yorker by birth, so maybe I should go with the homeboy LOL. I look forward to hearing about your treatment!
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Postby aliyalex » Sun Jan 30, 2011 8:33 am

CeCe,

i could ditto pretty much your whole story, except i heard about Dr S. from Marc, instead of Bestadmom.

I go to brooklyn for a much needed follow up and more complete treatment in 4 days and a snow storm is expected in 3 days. Oh dear.

So glad after all this time, we are finally being treated by our 1st choice.

Your CCSVI Buddy,
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Postby newlywed4ever » Sun Jan 30, 2011 10:28 am

Cece & Aliyalex - all of our stories are VERY similar! 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 :oops: 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 understoon 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!

Good luck to both of you - prayers and positive thoughts!
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Postby newlywed4ever » Sun Jan 30, 2011 10:34 am

P.S. on above - I am PPMS; dx 2000 - never had RRMS...
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Postby Cece » Sun Jan 30, 2011 10:49 am

Newlywed4ever, I am thrilled to hear this about everything except that left IJV, how disappointing there. Two out of three highways open, though, if that's two better than you had before - that should make a difference, I hope you will be feeling and doing better.

Aliyalex, all the best this coming week!! I am so happy for us all.

CenterOfGravity, it is a big decision, wishing you all the best with it.

1eye, we are only missing an Esvee, you are quite obviously the Eye. And eyes are especially important, fixing CCSVI is all about seeing CCSVI, it's right there to be seen. With ivus, if necessary. :D
Last edited by Cece on Sun Jan 30, 2011 2:03 pm, edited 1 time in total.
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Postby hopeful2 » Sun Jan 30, 2011 11:07 am

I don't want to hijack the thread---Cece you've waited a long time and now it's definitely your turn (well deserved).

I saw newlywed4ever post here about her procedure and was wondering if I'm the only one who was thinking: should be start a Brooklyn thread?

newlywed4ever, I'm glad things went smoothly even if not exactly what you hoped for. How is your energy? Did you get fentanyl (local anasthesia) during ballooning? Good to hear from you.

End of intrusion (thanks Cece).

Patrice
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Postby newlywed4ever » Sun Jan 30, 2011 12:59 pm

Hopeful2 - I agree with you about not hijacking Cece's thread and started a new thread "Brooklyn Experience" - thanks for the suggestion! Cece, this should be ALL about YOU :) You've devoted much time and energy which have helped us all. Hopeful2, I did get local anethesia during ballooning..but was ready to jump off the table during the azygous valve ballooning! Back to our friend & cohort Cece...
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Postby Cece » Sun Jan 30, 2011 1:49 pm

Hey now, it is all about all of us, and I get more than get my share of air space around here. :)

I saw the Brooklyn experience thread, that will be a good one!
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Postby bestadmom » Sun Jan 30, 2011 2:13 pm

Hey Cece,

I've hardly been on tims lately. Needled told me yesterday that you were good to go. Congrats. The best is yet to come!!! I'm so happy for you.

I'm going to Las Vegas on business on Feb 12th for the week so I'm not going to get to meet you and your family. I'm very very disappointed. I'll be with you in spirit, and will be sending Dr. S emails and texts to be sure you're doing well.

(((hugs)))
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Postby Lyon » Sun Jan 30, 2011 2:51 pm

..
Last edited by Lyon on Sun Jun 26, 2011 7:09 am, edited 1 time in total.
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Postby garyak » Sun Jan 30, 2011 5:41 pm

happy for you cece
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Postby Cece » Mon Jan 31, 2011 10:29 am

Countdown: 12 days away...

See, like an old hotel, I skipped right past the number 13. Not taking any chances with bad luck...and I was busy yesterday with other things, like secret projects and having the flu.

I've always considered myself lucky. After getting diagnosed with MS, I had to reconsider that. Even if I still felt lucky and fortunate and happy, MS is about as bad-luck as it gets.

CCSVI, on the other hand, is good-luck. When we go to get our dopplers or our MRVs, we are hoping for CCSVI to be found. Any bad-luck in CCSVI happened back in the womb; the good-luck is right now, when CCSVI is found, because CCSVI can be treated.

There was a study on luck that I read about in a magazine a few years ago (Scientific American? Psychology Today? Something along those lines.) The researchers had the participants fill out a survey to assess how lucky they considered themselves. Then they gave them a newspaper and asked them to count how many times something, like the letter T, appeared in the headlines throughout the newspaper. On the second page there was a box that said, "The Letter 'T' appears 63 times in this newspaper." The people who considered themselves lucky were much more likely to notice that.

So, those of us here who are lucky, perhaps it's just that we are paying attention. 99% of Americans have not yet heard of CCSVI, but we have, and we've got it, and we're getting treated. We are the lucky ones.
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