CCSVI treatment available in the U.S.!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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BadCopy
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Post by BadCopy »

I called on May 12th and will be there on Aug 20th. I will be sure to report back good and /or bad.
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Shea
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Post by Shea »

I called mid May and my appt. is Aug.23rd. I'm from Canada and I'm not sure if wait times for appointments for the clinic are longer or shorter as opposed to the hospital. Also, they have added a third doctor so hopefully the wait time will be shortened. Good luck to everyone with getting your phone calls and treatment.
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MaggieMae
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Post by MaggieMae »

Has anyone been scheduled for Baltimore, Maryland? We made our initial contacts and sent in required information. Also talked to the doctor 2 1/2 weeks ago, but we are still waiting for scheduling to call

If anyone has received treatment there, please PM me. Thank you.
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MaggieMae
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Post by MaggieMae »

bump
Cece
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Post by Cece »

Dyan Summers wrote:I met with my IR in NYC today and he is completely ready to start taking referrals for both evaluation and treatment. He told me to go ahead and post his information publicly- at this point the waiting list is short. He intends to do one full consultation and one treatment per day on an ongoing basis. He is affiliated ...with Columbia University, but works out of a satellite center so the IRB issue is not as critical for him. The MD is Dr. David Sperling, Columbia Endovascular #212-326-8874. Feel free to PM me if I can help answer questions for you. My venoplasty is scheduled for 8/20 and I will post afterwards to let everyone now how it goes!
Quoted from Facebook, hope it's ok to share here!
"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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ozarkcanoer
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Post by ozarkcanoer »

MaggieMae,

I am scheduled for Baltimore on August 17th. We are driving to Baltimore from St Louis this Saturday the 14th, a 2 day drive. I will have a consultation with the doctor on the 16th then the procedure on the 17th.

ozarkcanoer
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rssugg
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Post by rssugg »

^that is great news!

We need to kep this thread going!
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newfie-girl
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Post by newfie-girl »

Hi, just to give everyone some timeline on Albany.

I called on May 18th, the dr. called me back on May 24 for short consult.

On June 21, I had a call from Beth, and I am scheduled for August 24 :!: rd for venogram and angioplasty, and whatever else the dr. deems necessary. It's only two weeks away and I am getting quite anxious, nervous, and so many other emotions that go along with all of this.

Hope this is some help to establish a time line for all of those who are waiting for their call. Good Luck to all and I will keep you posted, as to how it all goes.

Chris :D ........Shea hope to see you there, and also Nancy who is scheduled for the same time.
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Donnchadh
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Post by Donnchadh »

Unfortunately, I had a bad experience with Albany. When they found out that I had 2 venoplasty procedures already, Dr. Siskin declined to treat me or even to see me. He apparently is concerned about following anyone else's prior work (he specifically referred to those MSer's who "foolishly went to Poland").

He also stated that his practice has performed 120 procedures as of 9 August 2010 and has an amazing queue of 1500 potential patients waiting for their turn.

Bottom line, if you had an earlier procedure done by someone other then Albany you might want to inquire upfront if they will treat you or not before waiting.

And if you are just entering their queue you will have a lengthy wait ahead of you.

This is in no way a comment on their medical services, skills, or results: I didn't get that far with them.

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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irv73
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Post by irv73 »

My first telephone call to Albany New York was May 24, 2010, received a return call from Kirsten on May 30. July 15 received a call scheduling testing and/or procedure for September 9, 2010.

I think I may have been offered someone's cancellation, hopefully this will help others estimating the times to expect a phone call.

Good luck to everyone, and may God bless. Ivan
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millertime
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Post by millertime »

Donnchadh wrote:Unfortunately, I had a bad experience with Albany. When they found out that I had 2 venoplasty procedures already, Dr. Siskin declined to treat me or even to see me. He apparently is concerned about following anyone else's prior work (he specifically referred to those MSer's who "foolishly went to Poland").

He also stated that his practice has performed 120 procedures as of 9 August 2010 and has an amazing queue of 1500 potential patients waiting for their turn.

Bottom line, if you had an earlier procedure done by someone other then Albany you might want to inquire upfront if they will treat you or not before waiting.

And if you are just entering their queue you will have a lengthy wait ahead of you.

This is in no way a comment on their medical services, skills, or results: I didn't get that far with them.

Donnchadh
Do you mind if I ask why you needed this procedure 3 times?
If your veins are collaping after the procedure would not stents be a more permanent (and cheaper) solution?
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Rieja
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Post by Rieja »

irv73 wrote:My first telephone call to Albany New York was May 24, 2010, received a return call from Kirsten on May 30. July 15 received a call scheduling testing and/or procedure for September 9, 2010.

I think I may have been offered someone's cancellation, hopefully this will help others estimating the times to expect a phone call.

Good luck to everyone, and may God bless. Ivan
Sept 9th for me as well!
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TFau
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Post by TFau »

Good luck everyone and sorry Donnchadh that they refused to treat you.

I cannot remember the exact day that I made the call - it's either the end of May or beginning of June. I've been obsessively checking my messages. I know they are swamped and I'm trying to be patient. Has anyone called to ask for an approximate timeline as to when they may receive a call?
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rssugg
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Post by rssugg »

^in the same boat. (I take my phone to the shower so i can hear it ring)
Cece
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Post by Cece »

Dr. Siskin does do stents. I suppose it is his right to set the boundaries and if he sees risk in trying to redo or undo some other doc's work, then in some ways he's protecting all of us by being more cautious and not risking an adverse event that could get him to stop performing the procedure...but dangit, for anyone who may need a stent and is having the procedure done by someone who doesn't do stents, that's yet another thing to keep in mind before choosing a doc...what a maze this all is. Sorry Donnchadh I hope you find what you're needing.

1500 on his list is insane. But as has been said before most people are on multiple lists and may find treatment elsewhere before he gets to them.

Anyone who is on Dr. Siskin's list can watch the symposium videos that girlgeek made, he's in some of them, it's good to get a feel for your doc before flying cross country for the procedure! And I disagree that people who went to Poland were foolish, it was the only option. Everything keeps on changing.

CCSVILocator sent out an announcement of the Columbia doc that has now gone public. His info is a few posts up in this thread, does anyone have any experience with him?
"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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