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Javabean, what was Dr. Siskin's opinion or have you asked him?

I lost my patience-originally, I was told November/December, and I have written 2 emails and called the CCSVI line-no answers. I called today-my name is on the list - July 19 - and they're talking Jan/Feb...just an FYI

Robin
P.S. I could get in sooner elsewhere, but I'm going to wait for what I think is the best practice...

rssugg wrote:here is the deal in Albany - Mehta and Siskin are working off the same wait list.

The good news - they are whittling it down (and i got called from both offices in about a 10 day span!!)

I dont think Dr ASiskin and Dr Mehta are working off the same wait list.
I'm scheduled with Dr Siskin and missed couple calls from Dr Mehta's office that they want to schedule me.

If they would be working on same waiting list then Mehta knew that I'm scheduled with Dr Siskin.

brave

brave wrote:

rssugg wrote:here is the deal in Albany - Mehta and Siskin are working off the same wait list.

The good news - they are whittling it down (and i got called from both offices in about a 10 day span!!)

I dont think Dr ASiskin and Dr Mehta are working off the same wait list.
I'm scheduled with Dr Siskin and missed couple calls from Dr Mehta's office that they want to schedule me.

If they would be working on same waiting list then Mehta knew that I'm scheduled with Dr Siskin.

brave

I think the point was that A LOT of people who signed up for Dr. Siskin ALSO PROBABLY signed up with Dr. Mehta ... therefore, there are a lot of people are on BOTH lists; and one doctor will eat at the other doctors list and vice versa ... and things should move faster as a result.

Cece,
The woman I spoke with at the clinic just wanted to know if I'm breastfeeding (which I'm not). She said that was the only contraindication. I know my question is not the focus of the thread but just had to throw it out there.
Thanks

javabean, it's helpful to know that it's not seen as a contradiction.

If they would be working on same waiting list then Mehta knew that I'm scheduled with Dr Siskin.

nah - they just arent talking and keeping each other updated in 'real time'. I talked to them at length about this.

The point that you should take away from this is that they are speeding up the process and are scheduling patients for December.

bruce123 wrote:Great news TFau !

I know what you mean about feeling stunned. I feel like I should be doing something to prepare but there's really nothing to do. Just make sure our passports are in order.

Here's a summary of the latest appointments that I know about.

Americans:
rssugg called early June. Call back was Oct. 16. Appointment is Nov. 8.
Brave called June 28 and has an appointment for Nov. 24.

Canadians:
Trish317 called May 18. Had treatment Sept 14
Bruce123 called May 26. Call back was Oct. 18. Appointment is Dec. 1
TFau called May 28. Call back was Oct. 20. Appointment is Dec. 14

Hang in there everybody. A few months of waiting will get you treatment by doctors who can draw on the knowlege and experiance of a few hundred more procedures.

Bruce.

We're American and my darling man's procedure was covered by his insurance.

My wife had her Doppler Ultrasound yesterday and tested positive for ccsvi. She is now scheduled on 12/17/2010 for the procedure. We are insured so treatment will be at the hospital. Our first call was June 28th.

Found the staff and Doctor Mandato very professional and caring. Doctor Mandato clearly explained the procedure and gave us some facts that other forums have noted:

About 33% of those treated have great outcomes (miraculous), 33% moderate improvements, and 33% no change. There is no decernable pattern to the percentages. (Leads me to believe that it is a matter of whether there has been permanent damage to the nerves or not.) He also stated that they do not treat may-thurner unless the patient has clear symptoms of that condition. Finally stents are a last resort for them.

longman111 wrote:There is no decernable pattern to the percentages. (Leads me to believe that it is a matter of whether there has been permanent damage to the nerves or not.)

I wonder about that though, for permanent damage you'd expect that to be the progressive group, but if there's no discernible pattern then there are equally or near-equally good outcomes and bad outcomes in all groups. That only makes sense to me if they're not succeeding in treating all the stenoses, making it more random who is getting the good outcomes. Otherwise you'd expect there to be a discernible pattern. No offense or disrespect meant: I think undertreatment vs overtreatment is a huge issue for all the docs and it's too early or not enough researched to know yet.

Congrats on your wife's upcoming procedure, I agree with the group consensus that Dr. Siskin and his partners have a great deal of experience at this point and that she is in good hands.

Hi all!

The actual proceedure was a breeze and painless for me, so don't worry about any type of pain.I had the proceedure done on 10/8 at Albany Medical Center/Community Care. I had a blocked right juggular and azygos. Some of the great changes were immediate, and my walking ability has been gradual, but getting better every day! Of course of all my symptoms, I wanted to be able to walk perfectly right after the proceedure like I see on you tube, but alas, it wasn't to be. At least not immediatly. However, I am walking short distances and around the house without my walker, so I believe it's progress! So don't give up!
Bladder urgency-gone! Fatigue-gone! Insomnia-gone! Cold feet-gone! Still have tingling in my legs, mostly now in my toes, but I think it's getting better as well. So far 4 down, 2 to go!
Keep the faith, and I'm told, give the proceedure and your body 3 months to work.

Trish317 wrote: We're American and my darling man's procedure was covered by his insurance.

If you don't mind my asking, how is he doing post-op?

Donnchadh

I'm from Canada and my first call to the clinic was June 6. Dr. Sisken e-mailed me and he guessed that my procedure would be sometime between Jan. and Mar. I haven't heard anything since.

I wonder about that though, for permanent damage you'd expect that to be the progressive group, but if there's no discernible pattern then there are equally or near-equally good outcomes and bad outcomes in all groups. That only makes sense to me if they're not succeeding in treating all the stenoses, making it more random who is getting the good outcomes. Otherwise you'd expect there to be a discernible pattern. No offense or disrespect meant: I think undertreatment vs overtreatment is a huge issue for all the docs and it's too early or not enough researched to know yet.

The breakdown percentages came from Doctor Mandato. I would hope that after 300 patients that their procedures would be consistent. If they are then what would the underlying difference be between the 3 group breakdown?

longman111 wrote:The breakdown percentages came from Doctor Mandato. I would hope that after 300 patients that their procedures would be consistent. If they are then what would the underlying difference be between the 3 group breakdown?

That's the big question, isn't it? I'd say permanent nerve damage too, but then I'd expect them to be seeing a pattern there.