Appointments at American Access Care

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

Postby hannakat » Thu Feb 17, 2011 1:27 pm

vivavie wrote:I did not go secretly, i just did not have the time to post it. I sneaked in and took the opportunity when Dr S mentionned on his tread that he was slowed by the insurance companies. Being Canadian I pay cash. I got the OK from Holly Saturday at 16h30 and was on his table Monday morning! Happy Valentines day to me!.


How wonderful! Some things are just meant to be. At least you didn't have to sit around worrying for weeks!

aliyalex and Cece ~ hoping for all good things to happen for you both!

~^--^~
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Postby mavis » Thu Feb 17, 2011 5:24 pm

Wow, wonders never cease! So, Dr. Sclafani has started using the "S" word, albeit reluctantly maybe?

What is the price tag for stent(s)?
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Postby Cece » Thu Feb 17, 2011 7:08 pm

thanks hannakat, and to you as well! :D

From what I know, he has not placed any stents except in complications when patients already have stents; then you can place a stent within a stent and hope that stops the hyperplasia from growing.

Aliyalex, will you be going back? Do you know why couldn't he do it all at once? Congrats on those dreams, I've got those too....

Vivavie, amazing, you moved fast to get there!

MaggieMae, all the best, I hope your date comes soon. What a wait.
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Postby drsclafani » Thu Feb 17, 2011 10:37 pm

mavis wrote:Wow, wonders never cease! So, Dr. Sclafani has started using the "S" word, albeit reluctantly maybe?

What is the price tag for stent(s)?


mavis
i have never put a stent in a patient with ms if someone hasnt come before me to mess up the sistuation by putting in stents.

in fairness, some of the stents were placed when angioplasty did not effect a good enlargement. However many are from the days when no one was using larger balloons. stents are a bad alternative to larger balloons for the most part but we will ultimately have to compare the outcomoesof the two techniques.


i am happy to have someone else put in the stents
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Postby aliyalex » Fri Feb 18, 2011 9:16 am

CeCe,

in my opinion, dr S had already been working on me almost 3 hrs when he was having trouble w/ an azygous valve. he spent time trying to work w/ the errant valve and said he'd have to go in again in a few more months.

realize that the respective illnesses are advanced in this subject, CCSVI and MS. He also said something about elastic recoil around that time. I don't remember if he was referring to the azygos.
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Postby mavis » Fri Feb 18, 2011 9:28 am

drsclafani wrote:
mavis
i have never put a stent in a patient with ms if someone hasnt come before me to mess up the sistuation by putting in stents.

in fairness, some of the stents were placed when angioplasty did not effect a good enlargement. However many are from the days when no one was using larger balloons. stents are a bad alternative to larger balloons for the most part but we will ultimately have to compare the outcomoesof the two techniques.


i am happy to have someone else put in the stents


That was my understanding as well Dr. Sclafani. Maybe I should have been more clear as to what I was referring to. My comment was to Aliyalex when she said when she goes for the second time she might need a stent.

Sorry for the confusion.
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Postby vivavie » Fri Feb 18, 2011 9:39 am

Cece wrote:
Vivavie, amazing, you moved fast to get there!



I drove 4hrs to Albany, took the train 2hrs to Penn Station! and Voilà

I was sorry not to see you at the Hotel. I had no computer with me, arrived Sunday night, spent Monday on the "table", when back for US (not easy to see thru 3 walls of stent!) on Tuesday and arrived home at 6pm Wednesday!

I met Squeekycat in the computer room twice!
Hello Squeeky, I hope your flight was not too painful... (She is part of the low % with bad reaction from Arixtra)

Big weekend for Dr S :D
There was some good vibrations in that Hotel, it was buzzing CCSVI from floor to floor!
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Postby aliyalex » Fri Feb 18, 2011 9:42 am

mavis,

actually dr s did not say specifically that i would get a stent next time, just more work on the valve. his Comment about this stent was more thinking about future interventions. It was not so concrete nor was it impending. I hope I'm being clearer.

realize that this conversation transpired while I was in the twilight state.
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Postby Cece » Fri Feb 18, 2011 9:48 am

aliyalex wrote:CeCe,

in my opinion, dr S had already been working on me almost 3 hrs when he was having trouble w/ an azygous valve. he spent time trying to work w/ the errant valve and said he'd have to go in again in a few more months.

realize that the respective illnesses are advanced in this subject, CCSVI and MS. He also said something about elastic recoil around that time. I don't remember if he was referring to the azygos.

That makes sense, aliyalex. It would be nice if CCSVI were easier or identical in its presentations from one patient to the next.

vivavie, that was my first thought when I saw that you'd been in Brooklyn at the same time as me - it is a shame not to meet up, although I was needing some recovery post-procedure - I'd gotten a better rate over at the Brooklyn Bridge Marriott, so we were over there, it was fantastic too but no CCSVI buzz other than the one I was on.
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Postby mavis » Fri Feb 18, 2011 11:41 am

aliyalex wrote:mavis,

actually dr s did not say specifically that i would get a stent next time, just more work on the valve. his Comment about this stent was more thinking about future interventions. It was not so concrete nor was it impending. I hope I'm being clearer.

realize that this conversation transpired while I was in the twilight state.


Thanks for the clarification Aliyalex.
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Postby Cece » Sun Feb 20, 2011 7:37 pm

vivavie wrote:I did not go secretly, i just did not have the time to post it. I sneaked in and took the opportunity when Dr S mentionned on his tread that he was slowed by the insurance companies. Being Canadian I pay cash. I got the OK from Holly Saturday at 16h30 and was on his table Monday morning! Happy Valentines day to me!


There is even more opportunity to get scheduled with Dr. Sclafani, he is now scheduling up to three patients per day instead of two, per this post:
www.thisisms.com/ftopicp-154661.html#154661

The only question is will there be time for lunch breaks? :D
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Postby HappyPoet » Mon Mar 07, 2011 4:35 pm

A bit late...

Dr. Sclafani and his excellent team at AAC have my family's and my eternal gratitude.

3/3/11 - US testing
3/4/11 - venogram/venoplasty

Dr. S exclaimed during my procedure, "Fantastic!" Here is his explanation of his exclamation:

drsclafani wrote:I HAVE LEARNED THAT THE VEIN IS NOT STRICTURED. MALFORMATION OF THE VALVE LEADS TO A FUNNEL INSIDE THE VEIN THAT NARROWS. THEREFORE YOU DO NOT NEED TO INFLATE AS MUCH AS THOUGHT BUT CERTAINLY MORE THAN WE USED TO. ALSO I THINK THERE ARE TWO TYPES OF VALVE PROBLEMS.
VALVE MALFORMATION IN WHICH THE VALVE LEAFLETS ARE FUSED TO CREATE THE FUNNEL AND ANNULUS MALFORMATION WHERE THE ANNULUS OF THE VEIN IS SMALL, NARROW AND OBSTRUCTIVE. THIS IS NOT AS EASY TO TREAT, REQUIRES HIGHER PRESSURE AND PERHAPS IS ASSOCIATED WITH THROMBOSIS, NOT SURE.

When walking out of AAC's offices, I noticed something I had never seen before in my life -- all the "EXIT" sign letters were glowing. I asked the staff if the signs had been glowing when I arrived. "Yes," they said. Because I kept staring at the glowing red letters, as if mesmerized, I had to be nudged along. I will never forget those "EXIT" signs, never.

Going to Dr. Sclafani was definitely the right decision, the best decision, and one of the smartest decisions I ever made in my entire life.

Best of luck to all.
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Postby hannakat » Mon Mar 07, 2011 4:51 pm

Wonderful news HP!
sending ++++++++ vibes always!

((((((((((HP)))))))))


~^,,^~
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Postby CCSVIhusband » Mon Mar 07, 2011 5:10 pm

Good stuff HP ... Glad he was able to help!

Anything else you've noticed in these few short days?
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Postby aliyalex » Mon Mar 07, 2011 5:19 pm

your happiness is contagious!
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