Community Care Albany?

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

Community Care Albany?

Postby Donnchadh » Sun Jun 13, 2010 8:52 am

The website for Community Care in Albany New York states that their IR will do the CCSVI liberation procedure. I called their number and received a call-back about a week later. The caller wanted basic information and insurance details. Said that I will receive a doctor call in about 3 more weeks.

Questions: Has anyone actually been treated there yet?
What is the waiting time for being treated?
Has anyone had stents implanted there?
If treated, were you satisfied with their care?
Any advice?

I am in a dilemma in that I found a local IR who will do a venogram on 21 June, and based on those findings might do a balloon procedure. Doing stents isn't an option, as he wants to start over.

I already had one balloon procedure from a different doctor, which resulted in dramatic symptom improvements but my veins re-stenosis. Perhaps a second balloon procedure will do the trick and stay open, but who knows? I could then face undergoing a third procedure but this time with stents.

How does a doctor know when ballooning isn't sufficent and stents are the very choice left?

Donnchadh
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Postby Cece » Sun Jun 13, 2010 9:45 am

Dr.Sclafani's study treatment plan calls for reballooning after the first incidence of restenosis and, if there is a second incidence of restenosis, they fall out of protocol but his plan then would be to do stents.

I believe in Dr. Zamboni's research that the people who did restenosis and had a subsequent second ballooning, the second ballooning held up very well. I am not sure where I got that info, though; I read it here somewhere, anyone else able to confirm or prove wrong?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby girlgeek33 » Sun Jun 13, 2010 10:15 am

I know a great number of people that have been treated there. Most are very, very happy! Some of these patients did have stents put in. A few were unable to have anything done. Stenosis showed when they were sitting up for doppler but nothing when they were lying down during venogram. If it were me, I might get on the list for Albany, it is growing every day, and then talk to your local Doc at length about your concerns. You will know if you are comfortable with being treated locally or waiting for a Doc that will use stents if you do require it...
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Postby bestadmom » Sun Jun 13, 2010 10:54 am

Cece wrote:Dr.Sclafani's study treatment plan calls for reballooning after the first incidence of restenosis and, if there is a second incidence of restenosis, they fall out of protocol but his plan then would be to do stents.

I believe in Dr. Zamboni's research that the people who did restenosis and had a subsequent second ballooning, the second ballooning held up very well. I am not sure where I got that info, though; I read it here somewhere, anyone else able to confirm or prove wrong?


Cece,

Where did you get this information about Dr. Sclafani's treatment? As far as I know, stents are not part of the plan, and I'm his #1 candidate for one.
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Postby Cece » Sun Jun 13, 2010 11:21 am

drsclafani wrote:
Donnchadh wrote:Dr. Sclafani:

When you resume the liberation procedure (note I am being positive here and saying WHEN and not IF :lol: ) will your IRB allow the use of stents or are you going to continue not using them?

Judging from the narratives of patients, the decision whether or not to use a stent seems to be quite a tough call. I would consider "conservative practice" to do a balloon procedure first, hoping that would be sufficient to solve the problem. While that would clearly be the best outcome, the high rate of re-stenosis would seem that sometimes something more was needed, like a stent in those cases.

I would like to add my thanks to the others for giving us your time and expertise in answering these questions.

Donnchadh



WHEN the IRB approves my proposal, I will post it on my website and will move transparently and let the chips fall where they may.

my proposal calls for reangioplasty for the first episode of restenosis and consider a stent for a subsequent restenosis. AT that time the patient falls out of protocol.

Thus i should start writing my next protocol now for submission to the IRB
eh?


Here is the response from Dr. Sclafani in his thread on June 1st. I see it was in response to Donnchadh in the first place so he did not need me repeating it back again!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby bestadmom » Sun Jun 13, 2010 11:31 am

Thank you Cece.

I wonder what this will mean for me? As someone previously treated by Dr. S, I can not be treated as part of the patients who will be protected under the IRB, but I still can't be treated until he gets approval from the IRB.

The rate of restenosis is high and very quick with a large % of people who have only had balloon angiolasty. Special stents need to be invented to treat ccsvi.
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Re: Community Care Albany?

Postby bmk1234 » Sun Jun 13, 2010 2:09 pm

Donnchadh wrote:The website for Community Care in Albany New York states that their IR will do the CCSVI liberation procedure. I called their number and received a call-back about a week later. The caller wanted basic information and insurance details. Said that I will receive a doctor call in about 3 more weeks.

Questions: Has anyone actually been treated there yet?
What is the waiting time for being treated?
Has anyone had stents implanted there?
If treated, were you satisfied with their care?
Any advice?

I am in a dilemma in that I found a local IR who will do a venogram on 21 June, and based on those findings might do a balloon procedure. Doing stents isn't an option, as he wants to start over.

I already had one balloon procedure from a different doctor, which resulted in dramatic symptom improvements but my veins re-stenosis. Perhaps a second balloon procedure will do the trick and stay open, but who knows? I could then face undergoing a third procedure but this time with stents.

How does a doctor know when ballooning isn't sufficent and stents are the very choice left?

Donnchadh


My aunt and I will be treated on 6/16/10.
PM me with your personal email address, if you would like updates.
bmk
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Postby laura383 » Sun Jun 13, 2010 2:49 pm

I called in early May, received a call 2 weeks later verifying basic information, was told a Dr would call in 2 weeks and never heard back again.
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Postby bmk1234 » Sun Jun 13, 2010 6:49 pm

laura383 wrote:I called in early May, received a call 2 weeks later verifying basic information, was told a Dr would call in 2 weeks and never heard back again.


I know they have been swamped. Give them a couple extra weeks.
They are very good and professional people.
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Postby BadCopy » Sun Jun 13, 2010 8:09 pm

I agree that they are extremely busy! I spoke with the scheduler the other day and she said things were moving along well. But that the number of inquires has increased tremendously. I had called back on May 12th and am scheduled for mid August. And that was before they had the huge increase in calls.

They do seem very professional and thorough. I suggest that once you get told the DR will be calling you start writing down the questions you want answered.

Good Luck
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Postby naychergirl » Thu Sep 23, 2010 12:57 pm

Hi All!
I am scheduled for Oct.8th and my insurance is covering it! Yay!
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Postby HFogerty » Thu Sep 23, 2010 2:39 pm

naychergirl: May I ask, are you scheduled for treatment or testing?
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Postby Trish317 » Thu Sep 23, 2010 2:59 pm

naychergirl wrote:Hi All!
I am scheduled for Oct.8th and my insurance is covering it! Yay!


Sending you prayers and good thoughts for wonderful results!
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Postby naychergirl » Fri Sep 24, 2010 7:05 am

HFogerty wrote:naychergirl: May I ask, are you scheduled for treatment or testing?


I have already been tested. The doctor down here said my left jugular had some degree of blockage when I sat up. I am going for treatment.
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Postby naychergirl » Fri Sep 24, 2010 7:07 am

Trish317 wrote:
naychergirl wrote:Hi All!
I am scheduled for Oct.8th and my insurance is covering it! Yay!


Sending you prayers and good thoughts for wonderful results!


Thanks Trish. This whole process, and how I came to find out about it has been miracle of God. And prayers are what we all need!
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