CCSVI treatment available in the U.S.!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Guider
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CCSVI treatment in United States

Post by Guider »

Hi, this is Guider. I have been reading these posts and have found much needed info. I have never participated in a forum before and feel very computer illiterate. Please bear with me. Thanks.
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Guider
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Post by Guider »

I should say my son has MS and through the info found here we called the clinic on Tuesday and received the initial return call on Wednesday. My question to all of you is: Is insurance coverage required or can you pay for it personally? Someone please answer. :?:

Guider
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Algis
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Post by Algis »

Guider: this depends on your location (?); I cant answer this; but probably one who lives closer to you will pop up and answer; don't worry :)

And welcome among us !!
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Guider
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Post by Guider »

As Cheer says ... go local. It IS possible here in the US. Maybe not Canada (yet) but that's coming as well.

In Newfoundland the neurologists won't even sign a requisition for the doppler ultrasound testing. Very frustrating :roll: . But I know that as more people leave the country and go elsewhere for treatment the neurologists will have to acknowledge and document the results.

Guider[/i]
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Guider
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Post by Guider »

Thanks Algis for the reply. I live in Newfoundland but we do not have insurance coverage on my son so he will not be able to have the treatment done under insurance. I am so afraid they will only accept people with insurance coverage and then he will be so disapointed.

Guider :)
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Algis
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Post by Algis »

I may stand corrected; but I'd assume it is easier to be tested/treated if you pay by yourself. Maybe private clinic; but I am convinced it is not really an issue (?)

Good luck; whatever the case :)
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Guider
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Post by Guider »

When I checked out the info for Bulgaria it said insurance required. Also when I checked out the clinic in New York all the info and forms shown requested insurance company to be listed. That's why I'm so concerned.

If it is too expensive :cry: I may not be able to cover it. Sigh. Oh the questions and worries still waiting to be relieved. We are such funny people aren't we? A microwave (instant) generation. But for anyone with MS - who can blame us, eh?

I wonder how Flashack is doing? He's the one I got so much info from. I wish him well.

Guider
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bmk1234
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Post by bmk1234 »

Guider wrote:When I checked out the info for Bulgaria it said insurance required. Also when I checked out the clinic in New York all the info and forms shown requested insurance company to be listed. That's why I'm so concerned.

If it is too expensive :cry: I may not be able to cover it. Sigh. Oh the questions and worries still waiting to be relieved. We are such funny people aren't we? A microwave (instant) generation. But for anyone with MS - who can blame us, eh?

I wonder how Flashack is doing? He's the one I got so much info from. I wish him well.

Guider
Dr. Siskin's clinic does perform the procedure on those that do not have insurance and need to pay for it themselves. Call the clinic and start the process, I believe they are now booked late into the year. If something good occurs in Canada prior to your date for the procedure you can always cancel your appt.

The clinic told me cost for those without insurance is $5,000 plus $2,000 per stent if needed.
Good Luck.
bmk
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Post by Cece »

bmk1234 wrote:The clinic told me cost for those without insurance is $5,000 plus $2,000 per stent if needed.
That's a really good price.

They do the non-insured patients in the clinic rather than the hospital, which keeps the cost down some and is just as safe.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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mshusband
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Post by mshusband »

Granted we have pretty good (really good actually) insurance ...

But we've been told 100% of the cost of the tests and procedure have been pre-approved for the procedure in 3 weeks.

(except for the $20 co-pay). Heck, it's not even out of network even though it's in a different state ... we're pretty excited about all of that.

Folks in the US ... it is possible to go LOCAL ... and save significant costs. The billing specialists that work with these doctors know what they are doing ... think about this when deciding to go to Poland or wherever vs. doing some work on your own and finding a doctor, getting him/her interested and getting everything done in the US (including critical follow-up).



(I don't really know much about Canadian insurance so I can't talk intelligently about that - nor how it would transfer to something done in the US though I wouldn't think that would even be possible considering ... but maybe).
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Guider
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Post by Guider »

Hi everyone,

Been reading the latest posts and appreciate the comments, info, and encouragement.

A 'High Five' to those who have received their appointments. I find this forum to be very interesting and informative.

Guider
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mshusband
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Post by mshusband »

Sorry to double post ... BUT I have some good news for the board ...

I KNOW of a doctor willing to treat CCSVI.

He doesn't want his name out there (for obvious reasons) ... so I'm respecting that, but if you are interested, please PM me and I'll pass your information along to their group. From there it is out of my hands ... I want to help you all if I can ...

It is east of the Missisippi River. I'm not going to give more detail than that in public. Also, I won't respond to your PM ... I'm just passing the information along to the doctor. (so don't think I'm discriminating against you if you don't get a call - I'm not the one making the decision).

It is a doctor we brought on board to CCSVI (he has very good credentials) and knows several of the doctors treating (or had treated) CCSVI before IRBs and shutdowns and the like. He has been to Dr. Dake's presentation in Tampa (you can find that on YouTube).

Anyway, we are not going through him anymore (we got an earlier date with another doctor and that is the only reason why) but want to keep him on board with CCSVI and he has expressed interest in doing so. This doctor is located near a LARGE American city ... so getting to/from him shouldn't be hard.

Again, if interested please PM me ... EASTERN part of the United States.

Need Name, Address and Phone Number ... (also you MUST have insurance to see him and be a US citizen - sorry if that disqualifies you).
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Post by Cece »

Props to you, mshusband, for bringing another doctor onboard!!! It is heartwarming to watch this spread, every time one patient brings one doctor onboard and then that one doctor treats dozens and dozens.

For now I'm sticking with Dr. Sclafani and, if DrS's IRB fails us, then Dr. Siskin...but I'll bet your pm box fills up quickly!!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Guider
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Post by Guider »

mshusband said

Folks in the US ... it is possible to go LOCAL ... and save significant costs. The billing specialists that work with these doctors know what they are doing ... think about this when deciding to go to Poland or wherever vs. doing some work on your own and finding a doctor, getting him/her interested and getting everything done in the US (including critical follow-up).

Guider says:
I weighed the pros and cons of where to try for treatment and was delighted to find Dr. Siskin's site. After all we will be just across the border and in a country with no language barriers. 2 pluses there and it also looks like it will be a reasonable price. That's a BONUS :D

By the time follow ups are due there may be a closer place they could be done.

Optimistic,
Guider
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javabean
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Post by javabean »

Hello,

I am new to the website but have been reading the posts for about a month now.

I called NY on the first day and got a call back the next day. I still have not heard from the doctor though. I think someone did call though because (twice) it was a restricted number and it was past midnight when the person called. My phone was downstairs, so I missed the call. :( Now I sleep with the phone at my side!

I am feeling so impatient. I assume others are still waiting?
Thanks
Last edited by javabean on Mon Jun 07, 2010 7:51 am, edited 1 time in total.
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