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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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brave
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Post by brave »

fogdweller wrote: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!!
I live in CA too , I'm in couple waiting list but no firm date yet.
would you please let me know the contact info for Pacific Center?

Thanks in advance
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nellie
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Post by nellie »

Just a little info! I emailed Dr. Siskin yesterday as I was wondering where I was on the list. I rcvd. my initial call in July saying they would call when they had an appt. I was told the appt. would most likely be Dec. Yesterday Dr. Siskin replied it would be mid 2011. I was so disappointed & am having trouble understanding how there could be a 6 mos. difference. Not sure what is going on there with the scheduling.
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Rieja
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Post by Rieja »

Assume 1000 patients applied
2-4 procedures a day
365 days a year or about 250 mon-fri days
vacation / sick days - 30ish
so... 220 days a year at 2-4 procedures per day.

That gets to be about 880 pts in a year - if lucky. If their list is 1000... you are looking into next year for an appt.


I hope that gives a bit of clarity :\
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eric593
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Post by eric593 »

nellie wrote:I was told the appt. would most likely be Dec. Yesterday Dr. Siskin replied it would be mid 2011. I was so disappointed & am having trouble understanding how there could be a 6 mos. difference. Not sure what is going on there with the scheduling.
I wonder if the clinical trial they are setting up is delaying treatment dates for many in the near future.
Cece
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Post by Cece »

I think Eric's guess is a good one. Or they are not able to do as many procedures in a day or a week as they thought they could. Are you on other lists, Nellie?
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HappyPoet
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Post by HappyPoet »

Hi Everyone,

I want to jump in here for a bit of clarity just in case there might be some confusion or concern...

Even though Dr. Mehta's study has been approved by clinicaltrials.gov, he is still scheduling regular CCSVI/MS patient appointments for those not interested in the study.

If any of you haven't read the "Dr. Mehta/Kacey" thread in a while, here's the link -- there is information about the differences between VSs and IRs that one might want to consider first before making any decisions: http://www.thisisms.com/ftopic-9998-day ... c-255.html

~HP
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naychergirl
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Post by naychergirl »

I got my call today! I am scheduled for October 8th at Community Care in Albany N.Y. Needless to say, I am thrilled. I have a tenative 11/15 in Poland. I'm going to cancel that! And I've been waiting for my Dr. down here to get IRB approval, but I'm still waiting. Wait no more woohoo!
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Vivianne766
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Post by Vivianne766 »

Kate_PghPA wrote:
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.

Thank u guys for ur advice and tnx Trish for ur sweet wishes.
How can I appeal the decision ? I have no idea what I must do?
I am wishing liberation with great results for all of us.
Love u all,
v
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Kawai
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Off to Albany

Post by Kawai »

Confirmed September 15th!!!!
Cece
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Re: Off to Albany

Post by Cece »

Kawai wrote:Confirmed September 15th!!!!
Two weeks away! Congrats to you and everyone who has recently received dates!

Dr. Hubbard just announced his irb approved registry study, to which qualified IRs can post their data without needing an irb approval of their own. Do you think Dr. Siskin will participate in this? He is doing so many, that's a lot of data that could be collected.
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naychergirl
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Post by naychergirl »

Congratulations goes out to all who have confirmed dates!

And for those still waiting, keep the faith and keep diligent. Your turn will be here soon!
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Trish317
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Re: Off to Albany

Post by Trish317 »

Cece wrote:
Kawai wrote:Confirmed September 15th!!!!
Two weeks away! Congrats to you and everyone who has recently received dates!

Dr. Hubbard just announced his irb approved registry study, to which qualified IRs can post their data without needing an irb approval of their own. Do you think Dr. Siskin will participate in this? He is doing so many, that's a lot of data that could be collected.
I think I just read (maybe on Facebook) that Dr. Siskin's trials also just received IRB approval. Or maybe it was here. Sorry....I read so much and do so much research, I don't always remember what I saw where. Maybe someone can confirm or tell me I need new glasses. :)
Cece
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Post by Cece »

I read that too, Trish. Anyone know what sort of study he's doing? If it's a RCT, he could still contribute registry data to Hubbard's study from the patients he is treating outside of the trial...but no idea if he'd want to do that or if that is how it works.
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naychergirl
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Re: Off to Albany

Post by naychergirl »

Trish317 wrote:
Cece wrote:
Kawai wrote:Confirmed September 15th!!!!
Two weeks away! Congrats to you and everyone who has recently received dates!

Dr. Hubbard just announced his irb approved registry study, to which qualified IRs can post their data without needing an irb approval of their own. Do you think Dr. Siskin will participate in this? He is doing so many, that's a lot of data that could be collected.
I think I just read (maybe on Facebook) that Dr. Siskin's trials also just received IRB approval. Or maybe it was here. Sorry....I read so much and do so much research, I don't always remember what I saw where. Maybe someone can confirm or tell me I need new glasses. :)
Hey Trish,
I'm confirming that Dr. Siskins office has IRB approval. I was told by Beth yesterday when she called with a date for me. I'm not going to have Dr. Siskin. He told me he was booked until about April 2011. I am going to have Dr. Englander instead.
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kimful
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Post by kimful »

nellie wrote:Just a little info! I emailed Dr. Siskin yesterday as I was wondering where I was on the list. I rcvd. my initial call in July saying they would call when they had an appt. I was told the appt. would most likely be Dec. Yesterday Dr. Siskin replied it would be mid 2011. I was so disappointed & am having trouble understanding how there could be a 6 mos. difference. Not sure what is going on there with the scheduling.
Same thing for me. Call in July said I would likely have an appointment in Dec/Jan. I emailed Dr. Siskin August 29 and he said I wouldn't have an appointment now until well into 2011. I'm disappointed too.
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