CCSVI treatment available in the U.S.!

BadCopy · Post by **BadCopy** » Thu Aug 12, 2010 3:41 am

http://www.timescolonist.com/health/cli ... story.html

SaintLouis · Post by **SaintLouis** » Thu Aug 12, 2010 5:31 am

Never mind

Donnchadh · Post by **Donnchadh** » Thu Aug 12, 2010 8:05 am

hannakat wrote:
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
My heart goes out to you Donnchadh. I've read so many reports of people having to have it done due to restenosis/failure, so to be given this kind of news is awlful. I hope you find the right doctor to treat you!

At present, my only hope is that the first IR finally gets his IRB approved; something which has been dragging on since March.

I will repeat my warning to those undergoing their first procedure, be prepared to have to repeat this procedure. Re-stenosis is unfortunately rather common. You may well have to have stents implanted, which brings a whole new set of concerns, for a lasting soloution.

Donnchadh

dlb · Post by **dlb** » Thu Aug 12, 2010 8:21 am

Donnchadh wrote: At present, my only hope is that the first IR finally gets his IRB approved; something which has been dragging on since March.

Donnchadh

Donnchadh,

I think he will! I just watched the videos from Detroit last night and the final comment he had was "I will not rest until this is Fixed". - if I am correct about your first procedure's IR. I am confident that he will be back and I know he is passionate about his patients. I'm pretty sure you have gone this route already.... but is there any way that your case can be argued because you have been previously treated (I'm talking about even w/o his IRB approval)?? Is there not some kind of concession made because you are already a px experiencing problems? Wish you all the best in your journey.

Donnchadh · Post by **Donnchadh** » Thu Aug 12, 2010 8:41 am

dlb wrote:
Donnchadh wrote: At present, my only hope is that the first IR finally gets his IRB approved; something which has been dragging on since March.

Donnchadh
Donnchadh,

I think he will! I just watched the videos from Detroit last night and the final comment he had was "I will not rest until this is Fixed". - if I am correct about your first procedure's IR. I am confident that he will be back and I know he is passionate about his patients. I'm pretty sure you have gone this route already.... but is there any way that your case can be argued because you have been previously treated (I'm talking about even w/o his IRB approval)?? Is there not some kind of concession made because you are already a px experiencing problems? Wish you all the best in your journey.

The IR involved is not Dr. Sclafani; he is someone I "tracked down" after hearing about CCSVI. His practice is "local" to me.

The problem is with the legal suits and conservative hospital board hearing about the one tragic experience with Dr. Dake. They are insisting on the IRB proposal, and I already asked about my existing patient status.
No go; they won't even OK a follow-up ultrasound-which is a completely non-invasive test.

I was thinking this morning that if I had any other condition which required a second, follow-up procedure there wouldn't have been a problem!

But that's the price for being the first in a totally new application.

In the meantime, we are getting worse while we have to wait.

Donnchadh

dlb · Post by **dlb** » Thu Aug 12, 2010 8:55 am

Oops, about my assumption - was really hoping it was Dr. S because I think he'll be back & probably so will your IR - just not soon enough, right?. I'm glad you are local to them , as that will be in your favor (I hope). So sorry you are in this predicament - best to you.
D

Rokkit · Post by **Rokkit** » Thu Aug 12, 2010 9:03 am

Donnchadh wrote:At present, my only hope is that the first IR finally gets his IRB approved; something which has been dragging on since March.

At this point, I have to declare the IRBs as a group to be completely irresponsible. You can't keep saying there's not enough research, when you are the one preventing that research. It is inconceivable that none of them have found a way to make this happen.

Cece · Post by **Cece** » Thu Aug 12, 2010 9:23 am

Rokkit wrote:At this point, I have to declare the IRBs as a group to be completely irresponsible. You can't keep saying there's not enough research, when you are the one preventing that research. It is inconceivable that none of them have found a way to make this happen.

From what I've gathered in Dr. Sclafani's thread, his irb would okay a randomized controlled trial. So they're not preventing research, as long as it's the research that they want and not what Dr. Sclafani wants with his experience and his rather convincing arguments that it's too soon and he and other doctors need a year to get the technique figured out. I think other irbs too will come through with approval in some shape. It is just so slow.

MsJae · Post by **MsJae** » Thu Aug 12, 2010 6:56 pm

I made my initial call to Albany on July 28th.
I received my phone call from Albany on August 10th.

I am from Canada and totally ticked off that there is nobody in this huge, MS ridden country that will do this locally.

I have a friend that recently returned from Albany and is doing terrific. His enthusiasm is helping me feel more at ease and confident about my decision.

We are all pioneers. Somebody has to be.

Drury · Post by **Drury** » Thu Aug 12, 2010 8:38 pm

Donnchadh,

I am so sorry you are in this awful situation and truly hope you find a doctor that will help you.

Thank you for having had the courage to be treated for CCSVI, keeping us updated and for leading the way forward for so many people.

Drury

CureIous · Post by **CureIous** » Thu Aug 12, 2010 8:45 pm

Rokkit wrote:
Donnchadh wrote:At present, my only hope is that the first IR finally gets his IRB approved; something which has been dragging on since March.
At this point, I have to declare the IRBs as a group to be completely irresponsible. You can't keep saying there's not enough research, when you are the one preventing that research. It is inconceivable that none of them have found a way to make this happen.

Yes, even imaging studies are being held up in IRB's.

Considering how quickly the neuros are able to get negative findings to press in austere publications, makes one wonder, eh? (sorry, Anna and everyone North of the border have me putting "eh?" at the end of EVERYTHING now!)

Cece · Post by **Cece** » Thu Aug 12, 2010 9:26 pm

CureIous wrote:Yes, even imaging studies are being held up in IRB's.

Do you know what possible reason is being given for imaging studies to be held up? It makes no sense at all.

siduri · Post by **siduri** » Thu Aug 12, 2010 10:10 pm

I was rather disappointed to hear how slowly the list for Dr. S in Albany seems to be moving. They have me down for having called on June 15 and was told this morning that I'd probably get a call around the first of the year to schedule an appointment!

thornyrose76 · Post by **thornyrose76** » Fri Aug 13, 2010 1:03 pm

MsJae wrote:I made my initial call to Albany on July 28th.
I received my phone call from Albany on August 10th.

I am from Canada and totally ticked off that there is nobody in this huge, MS ridden country that will do this locally.

I have a friend that recently returned from Albany and is doing terrific. His enthusiasm is helping me feel more at ease and confident about my decision.

We are all pioneers. Somebody has to be.

I phoned around that time and have not received any phone call yet. I left the messaGE with name phone number andd email. Did you do the same or did you get a live person, or what? I'm freaking out bc ii've got nothing.!!!!

BooBear · Post by **BooBear** » Sat Aug 14, 2010 2:44 am

Guys, I write to you from my hotel room in Albany, having been liberated yesterday.

Woot!

I was told that Albany is booked through January. They are the only group openly performing this procedure, folks, so it makes sense that they have a huge waiting list. They are working to knock off as many of us from that list as they can.

Guys, trust me- the wait is WORTH IT. You aren't waiting for a clinincal trial, or waiting for the talking heads to decide whether or not CCSVI is real- you are waiting to be treated. It is several months, but that time flies by- trust me.

The more success stories we have out there, the more open people will be to the procedure. I can tell you that the Albany team was great!!! Everyone- including the nurses- are aware of the CCSVI procedure and are just as excited as we are when we see improvements. Trust me, guys- the wait is worth it.