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03-08-2010, 02:19 PM
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Senior Member
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At this point in time, can this surgery be done if one can pay for the cost of the procedure?
I know it is in trials but what about getting it done regardless of being in the right place, i.e. Buffalo or Stanford. |
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| "Thanks for this!" says: | jeep4wd (03-08-2010), Twinkletoes (03-08-2010) |
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03-08-2010, 04:52 PM
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#2 | |||
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Junior Member
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I'm going to ask my neurologist tomorrow if I could have a vascular specailist look at my latest M.R.I's.I can just imagine the reaction"wait and see"At a score of a close EDSS of 6 there is no time
 In Canada we love to wait... Hope you have a team that is on your side  Hug's
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03-08-2010, 05:58 PM
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#3 | |||
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Magnate
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It's my understanding that the procedure is paid for by insurance since it is a medical problem. You don't need permission from your neurologist because it is a vascular problem not a neurological problem, even though in theory, it affects neurological health.
I'd ask Natalie. She's had it done and may have insight as to the ins and outs of what to do.
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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03-08-2010, 06:49 PM
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#4 | |||
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Senior Member
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Quote:
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| "Thanks for this!" says: | jeep4wd (03-08-2010), Twinkletoes (03-10-2010) |
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03-08-2010, 07:03 PM
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#5 | |||
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Member
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You can try to find someone locally to do it - and it should be covered by insurance. If you want to pay out of pocket and get it done like NOW - then you can travel out of the country (Poland is doing it now). Natalie found someone locally, so we know it isn't impossible. Check out the TIMS board on the topic (www.thisisms.com - they have an entire forum on CCSVI). Stanford has put a stop on the procedures, as they are gearing up for a trial at some point in time (no dates released yet)...and Buffalo is only doing testing at this point, though I just read that they paused that, too.
I definitely think it may be worth looking into - some people have seen fabulous results (barring the 2 people who died after the procedure). I almost went up to Stanford last spring, but am so dang happy with the HiCy, that there was no need. I'm not 100% convinced it's the 100% answer for MS, but some people are. It does not take into account any of the auto-immune issues present in MS. Just a word of caution on the TIMS board - they seem a little nutty (some of them anyhow). Many there are certain there is a conspiracy with the MS Societies and big pharma to block CCSVI from happening/moving forward. However, some of the stickies have good information. I like to read the conspiracy thoughts...they make me giggle. LOL  Good luck and keep us posted! ~Keri |
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03-09-2010, 06:24 PM
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#6 | |||
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Legendary
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I don't want to try and change your mind, but I did wonder if you'd seen this Cyndy? I'm not sure how I feel about the procedure for myself now, but I would take information like this into consideration when making up my mind.
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| "Thanks for this!" says: | SallyC (03-09-2010) |
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