This Is MS Multiple Sclerosis Knowledge & Support Community

I talked to Dr. Siskin this morning. He seems like a nice guy. They're now schdeduling for early to mid August. He also just heard back from the IRB on the trial side of things and is doing some revisions but seemed optimistic that he'd have IRB approval in two weeks. For the trial he is going to select people who are local, I think because there will be a need for many rechecks and follow-ups.

People travelling in just get straight-up treatment. He has now done 19 liberations, mostly in the last five weeks, with many more scheduled. He also presented the option of getting an MRV done locally and he'd look at it and diagnose CCSVI or not; then he'd only schedule the venogram & intervention if CCSVI was found.

He also stressed that he cannot predict long-term results from this, that with it being new he can't say what it will mean for our health in five or ten years, although he then went on to say that if it restenoses it can always be treated again.

Cece wrote:I talked to Dr. Siskin this morning. He seems like a nice guy. They're now schdeduling for early to mid August. He also just heard back from the IRB on the trial side of things and is doing some revisions but seemed optimistic that he'd have IRB approval in two weeks. For the trial he is going to select people who are local, I think because there will be a need for many rechecks and follow-ups.

People travelling in just get straight-up treatment. He has now done 19 liberations, mostly in the last five weeks, with many more scheduled. He also presented the option of getting an MRV done locally and he'd look at it and diagnose CCSVI or not; then he'd only schedule the venogram & intervention if CCSVI was found.

He also stressed that he cannot predict long-term results from this, that with it being new he can't say what it will mean for our health in five or ten years, although he then went on to say that if it restenoses it can always be treated again.

Cece, when did you make your initial contact? I'm just trying to get a feel for how long it takes for Dr. Siskin to call back.

Trish, it was around 2 pm in the afternoon that first day.

Cece wrote:Trish, it was around 2 pm in the afternoon that first day.

I'm sorry, I don't know what the date was that you called. I know FlashHack got a pretty quick response. I'm just wondering because I'm anxiously waiting for my darling man to get his call back. He initially called on May 18, which was just this past Tuesday. I think I'm more antsy about it than he is. lol! It's probably a little too soon to expect him to hear anything but each day seems like an eternity.

I called on the 12th of May and spoke to the doctor on May 16th.

pklittle wrote:I called on the 12th of May and spoke to the doctor on May 16th.

Thanks, PK! It seems like they're very prompt in returning calls, so he should be hearing something soon. I'll try to be a little more patient.

What's the most accurate diagnostic tool(?) for ccsvi, doppler us or venogram, both, what? I'm totally confused!! (sorry everyone!)

thornyrose76 wrote:What's the most accurate diagnostic tool(?) for ccsvi, doppler us or venogram, both, what? I'm totally confused!! (sorry everyone!)

From what I've read, it sounds like it's a combination of venography for the jugulars and doppler ultrasound for the azygos. But I'm really unclear about it, myself, Rose. I'm also not sure what an MRV shows. My darling man had an MRV on May 5, and he sees his neurologist on Monday for the results. My concern is that the technician wasn't knowledgable as to how to test him, and the radiologist reading it isn't knowledgable as to what to look for regarding CCSVI.

But I'm very thankful that his neuro was willing to send him for it. It was the first time he saw her and he said she was open to discussing CCSVI with him and learning about it. Score one for neurologists. lol!

I called the day this thread was started on May 12th...hope to help! Someone earlier posted that they'd called at around 9 a.m. that day, so they've now made it at least to the afternoon.

Do we know how some of the 19 that have been done are doing?

I'd really like to know as well, before and after...

Cece wrote:I called the day this thread was started on May 12th...hope to help! Someone earlier posted that they'd called at around 9 a.m. that day, so they've now made it at least to the afternoon.

Thanks, Cece! It looks like it's within about a week to ten days that they're getting back to people. That's really wonderful! They must be swamped with calls.

I am anxiously awaiting my call back as well- it has been about a week. I can't wait, I can't wait, I can't wait!

I called mid to late morning on the 12th. I just got scheduled for June 16th.
Blaine

At the risk of splitting hairs, what time zone are you in?