CCSVI treatment available in the U.S.!

tiredloulou · Post by **tiredloulou** » Sat Aug 21, 2010 2:43 pm

did you have your test done at home and mailed these to him?
he reviewed these and then booked your treatment?
or they did your test prior
( might misunderstood )

cost?

the best to you...........

Music · Post by **Music** » Sat Aug 21, 2010 3:01 pm

Hi tiredloulou,

1) I had my scans done at False Creek Center in Vancouver B.C.
Dr. Arata requests you send him these - don't know if he does these there - don't think so.

2) Yes, he reviewed them and then I was contacted.

3) The cost I believe is different for everyone - don't think mine was unreasonable at all.

Take care.

fogdweller · Post by **fogdweller** » Sat Aug 21, 2010 3:43 pm

tiredloulou wrote:did you have your test done at home and mailed these to him?
he reviewed these and then booked your treatment?
or they did your test prior
( might misunderstood )

cost?

When I called, they said they would do all the tests there, including the MRV, but did ask if I had my MRV yet. Apparently most people are approaching them afther they have an MRV showing CCSVI.

As to cost, the MRV was $1,000-1,500 and they are apparentlly having some luck getting insurance to pay.

I am calling Monday to set up dates and will post my experience to let everyone know. I agree about the TIMS site, although it has consumed many hundred hours of my life since Oct. 09. Well worth it.
the best to you...........

Vivianne766 · Post by **Vivianne766** » Mon Aug 23, 2010 9:34 am

BevB wrote: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.

...

I agree.
Well... when Flash got liberated on July 12th the doctors told him there are 700-800 people on the list, and they are doing 90-100 people a month.
... it just doesn't make sense that you'll be at the end of the year because you called in May.

MSbutnotMS · Post by **MSbutnotMS** » Mon Aug 23, 2010 12:43 pm

To begin with I would like to thank all those that have done so much work in getting information on this site and availble to people like myself. Words cannot express my thanks. I have not posted very much because I have had very little to information to offer.
Now, to the topic of this thread.
I made the call to Albany on May 21. I received the call back and the email shortly after that. I just received a phone call today and my procedure has been booked for October 15.

SandyK · Post by **SandyK** » Mon Aug 23, 2010 12:50 pm

I am scheduled for 10/13!

Dave_NC · Post by **Dave_NC** » Mon Aug 23, 2010 1:10 pm

SandyK wrote:I am scheduled for 10/13!

When did you originally call?

BevB · Post by **BevB** » Mon Aug 23, 2010 3:24 pm

MSbutnotMS wrote:To begin with I would like to thank all those that have done so much work in getting information on this site and availble to people like myself. Words cannot express my thanks. I have not posted very much because I have had very little to information to offer.
Now, to the topic of this thread.
I made the call to Albany on May 21. I received the call back and the email shortly after that. I just received a phone call today and my procedure has been booked for October 15.

Congratulations

and thanks for the info. This coincides with the e-mail they sent me saying they were in the process of booking October. We also now know they are booking call dates from around May 21st. This is somewhat strange as someone else posted they had an appoinment with a call date around the 31st and another very specifically laid out a call of May 28th. It seems all over the place

Best of luck to all scheduled and waiting

Trish317 · Post by **Trish317** » Mon Aug 23, 2010 4:21 pm

I could be wrong but I think the differences in scheduling are dependent upon the procedure being performed at the hospital or the clinic.

newlywed4ever · Post by **newlywed4ever** » Mon Aug 23, 2010 6:52 pm

Trish - that is exactly the way I understood it, too. Dr S indicated to me that he regrets there is no way to treat triage-style - meaning a way to determine who can most benefit. Therefore, they adhere to call dates as the scheduling order; and then there's the 2 places (hospital/clinic).

Guider · Post by **Guider** » Tue Aug 24, 2010 2:47 pm

Hi to everyone,

My son finally had to email Albany requesting information re scheduling and his place on the list. This is the email he received in return today:

"from Rachelle Stepnowski on behalf of CCSVI IR:

Hi Justin,
Yes we have you registered on our waiting list as of June 1st. Our list changes daily due to people seeking treatment elsewhere as you know. You are probably on the cusp of being treated in December or January. Everyone is on our cancellation list so if anything opens, it is offered to the next person in line.

Thank you for being patient!"

Not sure what cusp means - do you?

It's disappointing because we were hoping for an October appt. However it does give us some guideline for our expectations.

BTW, congratulations to SandyK and MSbutnotMS. I am so pleased for you.

Guider

Trish317 · Post by **Trish317** » Tue Aug 24, 2010 3:27 pm

Guider wrote:Hi to everyone,

My son finally had to email Albany requesting information re scheduling and his place on the list. This is the email he received in return today:

"from Rachelle Stepnowski on behalf of CCSVI IR:

Hi Justin,
Yes we have you registered on our waiting list as of June 1st. Our list changes daily due to people seeking treatment elsewhere as you know. You are probably on the cusp of being treated in December or January. Everyone is on our cancellation list so if anything opens, it is offered to the next person in line.

Thank you for being patient!"

Not sure what cusp means - do you?

It's disappointing because we were hoping for an October appt. However it does give us some guideline for our expectations.

BTW, congratulations to SandyK and MSbutnotMS. I am so pleased for you.

Guider

Well, I'm only guessing about what she meant regarding being on the "cusp". But, given the definition of the word, I'd say she meant the end of December, beginning of January. But, that's only my interpretation. Also, as she said, things can change if people cancel.

Vivianne766 · Post by **Vivianne766** » Wed Aug 25, 2010 5:14 pm

I got a call from Albany today.
I was giving up on them really I was. so those of u who are still waiting don't give up. They are updating their list due to cancellations.
My date depends on my insurance but end of Sep. is a possibility.
I hope things move fast for all of us. I got my first call back June 3rd.
I think I called them on 1-2 June. So....... I guess there was a cancellation.
They said they will e-mail me.

good luck to us all.

BadCopy · Post by **BadCopy** » Wed Aug 25, 2010 9:29 pm

I just have to say it is great to hear that so many of you are getting your dates.

Good luck to you all !!! The people in Albany are GREAT!!! And you have to stop in the Recovery Room for wings and a beer.

brave · Post by **brave** » Wed Aug 25, 2010 9:33 pm

how exciting Vivianne766, that's a good news. I'm happy for you.

It's promising for rest of us who are waiting

brave

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CCSVI treatment available in the U.S.!

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