Recommendations

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Recommendations

Postby 81Charger » Thu Mar 07, 2013 9:30 am

Hi I'm looking for recommendations on where a good place to go and have the CCSVI procdure done. I'm in eastern Canada, I've considerd driving to Dr. Siskin in NY but he raised his price over $3000.00 and I thought that maybe someone had a cheaper alternative.

Thanks Glenn
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Re: Recommendations

Postby Anonymoose » Thu Mar 07, 2013 9:43 am

Hi Charger,

I think you'll find many recommend Dr. Sclafani (I think he's in Brooklyn, NY) who posts in this forum. Please don't bargain hunt with your brain. I know money is dear, but you can get more money. You can't get more brain. Go for the best and most experienced...and someone who uses IVUS. It really does make a difference in results.

GL!
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Re: Recommendations

Postby Cece » Thu Mar 07, 2013 9:50 am

Dr. Sclafani (Brooklyn), Dr. McGuckin (NJ), Dr. Cumming (MN), Dr. Ferral (Chicago), Dr. Sullivan (Atlanta), Dr. Arata (CA)?
I'm not up-to-date on what the fees are unfortunately. It does not surprise me that Dr. Siskin raised his rates because he's always been on the lower side for fees, with nearly a year-long waiting list, and now he's involved with running trials too!
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Re: Recommendations

Postby 81Charger » Thu Mar 07, 2013 4:35 pm

Thanks for your help, I understand the importance of a good Dr. That's why I was looking for recommendations. I'll check the names given just to see if I can save some money. I thought I had enough saved to have the procedure done this summer but now with the increase in price, it looks like it will have to wait a while longer.

Thanks Glenn
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Re: Recommendations

Postby Cece » Thu Mar 07, 2013 6:57 pm

That is disappointing. At least the doctors continue to gain experience in the meantime.

Some doctors also offer discounted second procedures. Not that you want to be thinking about that now but complications or early restenosis can happen. I know people who have gone into this once and that's all it took, and I know people who had five procedures because of complications after each one. If you can choose a doctor whose techniques minimize the chances of complications or early stenosis, then that would be ideal. There's some evidence that IVUS used appropriately does that, which is why four of the doctors I named use IVUS.

Good luck and keep us in the loop! We don't hear from people going into the procedure as often as we used to, and I still like hearing about people's improvements or even about lack of improvements if unfortunately that happens. It's all information and it all helps the next guy when people report back.
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Re: Recommendations

Postby DougL » Fri Mar 08, 2013 6:05 am

hi Glenn from a fellow Maritimer. PEI and NS and NB. now stuck in Ontario

IMO cost wise, most of the Docs are pretty much the same and with everything in life, if it sounds too good then it probably is.

we went to Brooklyn and made a vacation out of it. saw Lady Liberty, 5th Avenue, Ground Zero. had lunch in a little dive just beside the Doc's office and listened to some old guys "fuggetaboutit". you have to pay the money so why not enjoy some of it if you can.

the two choices i looked at were Dr S in Brooklyn and the Hubbards in California. at the time, leaders in the field. in the end, i just felt better with Dr. S.

good luck with whatever you do. please don't pick one based only on price. if you can't afford it now i think it is better to wait then risk an unsafe (ie cheap) procedure.
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Re: Recommendations

Postby 81Charger » Fri Mar 08, 2013 12:53 pm

You guys all make some great points. From what you guys are recommending I'd say that Dr. S in Brooklyn is a leader and must be very good. I'll have to wait until I can afford to go.

Thanks everyone again
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