This Is MS Multiple Sclerosis Knowledge & Support Community

I understand there is an interventional radiologist at Swedish Hospital in Seattle who now has approval to treat CCSVI.

Here is a link to information from another website:

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Here is further information posted later: Prices: MRV = $750 / Venogram = $5,000 / Angioplasty per visit = $2,000 / Per Stent $1,000. I don't know if they are able to accept insurance.

This may help some west coasters. I recall Selkie from Hawaii was also looking for a place in the west. I'm sure there is a direct flight from Honolulu to Seattle.

a week.[/quote]About those numbers...if I remember correctly, the angioplasty/CCSVI is only done on 1 or 2 days

I was done on Wednesday in Albany and I know of some one else who was done the day before and at least 2 were being done on Thursday when I went for follow-up. They told me they do one to four each day! Tues. - Fri. Looks like at least 4 days this week.

Just wanted to share a little information, although I don't think it adds to what we already know from this thread.

I finally broke down and emailed Dr. S's office in Albany to ask where we were on the list (I didn't record the date of our initial call). I put in the Re line "please answer only if you have a spare minute".

Dr. S wrote back today (Sunday) and let me know that our call was May 28th and said that they are just finishing up the Oct appts and we should expect to get a date in Nov or Dec at the latest.

We're in Canada so would be going to the clinic, but Dr. S didn't make a distinction between hospital and clinic treatment in his email. However, in my email to him, I mentioned that we are Canadian and do not have insurance for the procedure in the States, so he must have been talking about scheduling for the clinic.

i was hoping it was going faster .

I called Alany June28 and last week e-mailed Dr S to ask if they can tell me any tentative date.

He replied today saying that my turn will be around mid 2011

brave

that's when I called . although I was told at the time it would be 6 months . seems it's getting longer. <sigh>

What is the most recent call in date to be scheduled for treatment? I asked a couple people but I didn't hear back. Anything in the beginning of June?

BadCopy wrote:

fogdweller wrote:Thanks, Cece, I did get that backwards. The jugs are when you are lying down, the others when you are verticle.

So if my stenosis turns out to be in the jugsulars only, then that expalins why I get really bad at night, but by day not so bad.

I think I will start a thread tomorrow and see if those that hae been treated can show a corellation.

I was just treated in NY on 8/10. I was always worse when I just woke up. After about a 1/2 hour I would start to come around. They found probs in both Jugs and Azygus, Verts were fine.

Hey BadCopy,

Did you ask him about your verts or were there images on your cd?

Does he normally check/treat these?

Thx

A/C

AlmostClever wrote:

BadCopy wrote:

fogdweller wrote:Thanks, Cece, I did get that backwards. The jugs are when you are lying down, the others when you are verticle.

So if my stenosis turns out to be in the jugsulars only, then that expalins why I get really bad at night, but by day not so bad.

I think I will start a thread tomorrow and see if those that hae been treated can show a corellation.

I was just treated in NY on 8/10. I was always worse when I just woke up. After about a 1/2 hour I would start to come around. They found probs in both Jugs and Azygus, Verts were fine.

Hey BadCopy,

Did you ask him about your verts or were there images on your cd?

Does he normally check/treat these?

Thx

A/C

Hey Badcopy, Almostclever, there is a thread going now. These would be great additions to that thread. The edit function may work to move them?? Don't know.

It seems like my date will be October 13th.
It'll be at the clinic cz my stupid insu. is not paying. I'll down grade my plan.

Vivianne766,

So glad that you have a firm date.

I know somebody else on this website had a problem with their insurance company and they are appealing the decision - in fact I think they might have even won so please give it a try.

Drury

Vivianne766 wrote:It seems like my date will be October 13th.
It'll be at the clinic cz my stupid insu. is not paying. I'll down grade my plan.

I'm so glad you have a date, Viv. You'll be in my thoughts and prayers.

Drury wrote:Vivianne766,

So glad that you have a firm date.

I know somebody else on this website had a problem with their insurance company and they are appealing the decision - in fact I think they might have even won so please give it a try.

Drury

I agree Drury...I used to do RN Claim review for Highmark Bc/bs...

the Vast Majority of insured NEVER Challenge Decisions...always Fight the Insurers!!! All they can do is say No.

I am setting things up with Pacific Center in California. When I started a couple weeks ago there was no waiting list. Now they are scheduling in October!!

Hi everyone!
Gosh, you don't know how nice it feels to be out of bed rest and reading-up on my favorite forum. Needless to say, I'm looking forward to widening my narrowed IJV (only Doppler confirmed at this point) at Dr S's office in Albany.

I try to hope and find strength. I'm living by the minute. I just really need to know if there are people in wheelchairs who do the liberation procedure with good results with regards to mobility. I just don't know. Does anyone here know?

I'm in a wheelchair now for the past 2 years. I've had RRMS and I still get RR symptoms, but my walking hasn't returned. Strange. Frustrating.

I've learned that this procedure helps movement. I understand we're all different and there are no guarantees, of course. I'm just searching for hope on this. Has this procedure helped anyone walk again?

Thanks for shedding some light.