CCSVI treatment available in the U.S.!

millertime · Post by **millertime** » Fri Aug 20, 2010 10:23 am

I also called the Pacific group. I am looking forward to see how your treatment went. I wish you best of luck.

I did not yet book as I am uncomfortable with not knowing which of the 10 places I may end up, not to mention not knowing who will be doing the procedure. I wonder how well they have it set up and ready for out of towners ex:do they have any agreements with local hotels etc?

I also see they are $3000 more than Albany.

bruce123 · Post by **bruce123** » Fri Aug 20, 2010 10:34 am

I just got an email reply from Albany. I had called May 26 to get on the list. I was told today that they hope to treat everyone who called in May before the end of this year and that we can expect a call in the next couple of months! This is a much longer wait than I expected but at least it will be within the next 4 months. We are paying cash so I think we are on a slower list. It seems the insurance people get in a bit faster, but this is just a guess.

It is tempting to go to Pacific Interventionalists since they have no wait but Albany is only a 5 hour drive and I feel that Dr. Siskin has a lot of experiance now and that may be important. I guess we'll continue to stew about this.

Bruce.

BevB · Post by **BevB** » Fri Aug 20, 2010 11:50 am

I also e-mailed Albany today. My initial call date was June 1st and this is the response I received:

You are probably going to be scheduled the 1st quarter of 2011. As you know our list changes daily and we are in the process of scheduling people in the month of October right now. Once we complete this schedule we will be updating our list again.

I can only hope the update works in my favour. Very discouraging but I know they are doing their best. It's hard to believe in 3 weeks they filled up 7 months, if June 1st callers are being treated in January.

If only I'd heard about Albany sooner.

thornyrose76 · Post by **thornyrose76** » Fri Aug 20, 2010 11:53 am

I am also from Canada and just got a call on Monday from Albany asking for all my particulars-put on waiting list. Now they told me late winter, early Spring...

thornyrose76 · Post by **thornyrose76** » Fri Aug 20, 2010 11:54 am

...I called last week of July.

Vivianne766 · Post by **Vivianne766** » Fri Aug 20, 2010 2:38 pm

millertime wrote:I finally broke down and emailed Albany on the general timeframe I could expect an appointment. I did this as I can get into 2 facilities in Europe one the first week in Dec and the other probably sooner. I was wanting to go to Albany but not if it is a couple of months longer to wait.
I initially called the end of June (forget exact date but within last 2 daysof June) and was told during the followup return phone call that it would be late fall before I could have the procedure.
In the email just recieved I was told:

At this point, all we are telling people who called us at that time is that we will have an appointment for them well into 2011. Every month, we are revising our estimates and expect to do so again in a week or so.

Not what I was really expecting.

Figured I better report this as many others are probably wondering who called during this timeframe too.
Note : this was for procedure in clinic without insurance

VERY DISAPPOINTING . After all his waiting they say it's going to be in 2011. that is not OK. Waiting that long is not an option for some of us.
I don't care how good this team is , if I have to wait that long some of the damages might be permanent.

Donnchadh · Post by **Donnchadh** » Fri Aug 20, 2010 4:05 pm

This potential new source of liberation procedures Pacific represents a tough choice.....little is known about them (how good are they with CCSVI?) versus a long wait for other doctors.

Dr. Siskin when I talked to him last week said he was very reluctant to follow other IR's work (which I believe was the real reason he turned me down and not my actual medical condition). So MSer's who have been treated elsewhere (like Poland) would probably have a difficult time being accepted by him if your condition re-stenosis.

But if you wait for positive feedback on Pacific, you could well be looking at a lengthly wait similar to Albany.

Also, what mustn't be overlooked is that the vast majority of MSer's haven't heard of CCSVI yet; so there's a potential pool of about 400,000 other patients competing for treatment in the near future. This forum is cutting edge so we tend to overlook this factor.

nicknewf · Post by **nicknewf** » Fri Aug 20, 2010 4:22 pm

The waiting is scary, but have faith. The dam will break, and more IRs will get on board. Just remember how It's only been a year that this new source of hope emerged, and less than 0.1% of the MS population has been treated. A treatment date this year is better (in some ways) than well over 99% of those in line.

Guider · Post by **Guider** » Sat Aug 21, 2010 9:32 am

Hi everyone,

I came on line to see if there were any updates re the scheduling and find that I am very disappointed to hear that it is such a long wait time still. Our initial call to them was June 2nd. so that means we may have a very long wait yet. Disappointed, frustrated, .....

Guider

hannakat · Post by **hannakat** » Sat Aug 21, 2010 10:23 am

Don't get discouraged....Albany's list has to be getting shorter with news of every new treatment center/treating doctor. People are shifting here and there so there is hope (IMHO) that the wait will not be as long as predicted.

Why would they treat 'cash paying' patients on a different time table than 'insured' patients. Just wondering......

~^,,^~

Cece · Post by **Cece** » Sat Aug 21, 2010 10:49 am

hannakat wrote:Why would they treat 'cash paying' patients on a different time table than 'insured' patients. Just wondering......

It's nothing sinister, it's just that the uninsured are being done at the clinic. This keeps costs down for the patients who are paying. The insured are done at the hospital, where costs are higher because of the hospital.

For people who are paying out of pocket for this, Albany is the cheapest by about $2000 (or more, depending on the doc)...so they are doing something right...this will also keep their clinic/uninsured line long, I think, as more and more Canadians or American uninsured choose him over others.

fogdweller · Post by **fogdweller** » Sat Aug 21, 2010 11:47 am

Donnchadh wrote:This potential new source of liberation procedures Pacific represents a tough choice.....little is known about them (how good are they with CCSVI?) versus a long wait for other doctors.

I just contacted Pacific. I am trying to find out about Dr. Arata. He seems to be well trained and interested in the right stuff. He allegedly has been attending Dr. Sclcafani's seminars, and a few people treated by himn had good reports. I am investigating the imagining techniques they use. I too feel concerned because it looks too easy and fast. Sort of the "reluctance to join a country club that would have me as a member" syndrome. If I wait too long, though, suddenly there may be a long waiting list.

I also would like to volunteer for a study, which although not best for me is best for the CCSVI progress. Maybe Hubbard?

Music · Post by **Music** » Sat Aug 21, 2010 1:40 pm

I am scheduled in at the Pacific Interventionalists for Sept. 1 & 2 and have no qualms about my decision to go there. There was someone here on TIMS who had been treated there and was quite pleased - can't remember who it was?? Dr. Arata will be performing my surgery.

Also, TIMS site is the BEST!! The people/suggestions/experiences have been very helpful.

Cece · Post by **Cece** » Sat Aug 21, 2010 1:59 pm

Music wrote:I am scheduled in at the Pacific Interventionalists for Sept. 1 & 2 and have no qualms about my decision to go there. There was someone here on TIMS who had been treated there and was quite pleased - can't remember who it was?? Dr. Arata will be performing my surgery.

Also, TIMS site is the BEST!! The people/suggestions/experiences have been very helpful.

How recently did you call? Did you have a choice of doctors and request Dr. Arata?
Best wishes with the procedure! And welcome to the site.

fogdweller wrote:I also would like to volunteer for a study, which although not best for me is best for the CCSVI progress. Maybe Hubbard?

I know he has an IRB but does anyone know the details of what he's studying? He's not doing anything randomized, so maybe he is doing a general safety and compiling results sort of study? I am curious about this if anyone knows.

Music · Post by **Music** » Sat Aug 21, 2010 2:22 pm

Hi Cece,

I called three weeks ago and was scheduled yesterday. They would have contacted me sooner but some of the staff were gone for several days. They are very busy right now with calls and e-mails.

No, I did not request Dr. Arata but he was the one who reviewed my MRV and Doppler scans and in my e-mailed confirmation it stated he would be doing my procedure.