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

Postby bestadmom » Sat Jun 20, 2009 7:45 am

response to WhyRwehere

Buffalo has started the scanning already. They are taking appointments in Sept but they offered me July 14th - I can't go then. They are keeping the data for themselves since this is a study, but they will give you a disk with your mrv if you ask the technician. You'd then need to take it to another doctor for analysis and interventional surgery.

Hopefully you can jump on the July 14th date- Niagara Falls is a great destination, see them when in Buffalo!
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Postby LR1234 » Sat Jun 20, 2009 7:50 am

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Postby peekaboo » Sat Jun 20, 2009 8:35 am

LR - It sounds like you are heading in the right direction :)
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Postby LR1234 » Thu Jun 25, 2009 11:05 am

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Postby Sharon » Thu Jun 25, 2009 11:14 am

LR -

Cheer's Jeff had a bunch of brain lesions, but his physical disability was at an EDSS of 1.5. So, when you say
I am starting to think that the stenosis comes as you get worse rather than being there from the start or I would have it now:(


Kind of hard to make a judgement call - Jeff at an EDSS 1.5 - 20 brain lesions. I am at an EDSS of 3.5-4.0 and I have a few brain lesions.

It is really important that the scans are done correctly and that they are read correctly. You would be the only one so far (including MS'rs in Zamboni's research) with clinically diagnosed MS and no stenosis.

You just mentioned the jugulars - what about the asygous?

Sharon
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Postby chrishasms » Thu Jun 25, 2009 11:49 am

123
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Postby whyRwehere » Thu Jun 25, 2009 12:25 pm

Thanks bestadmom for the info. I just noticed your answer about 5 days later...how did that happen? Well, I've been to Niagra Falls back in '77 or '78 , but we might go again. I am a little nervous about putting my husband through it all with the enhancement...which he has never had, without having any insurance to cover him while he is there, in case it causes problems. have to think about it.
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Postby guitarguy » Thu Jun 25, 2009 12:53 pm

chrishasms wrote:I am an EDSS of 6.0. The more I am seeing the more I am thinking of going to Cali. I really want to walk again and not feel like crying when I do lol.


Didn't the revimmune help you much?
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Postby peekaboo » Thu Jun 25, 2009 4:14 pm

LR wrote:

Starting to get a bit worried now...If I have RRMS how come I had no stenosis in my jugulars:( I am going to double check that the scan was done up to the jaw line. Any advice?


Dr Dake told me he was concerned about Zamboni's dopplers missing the jaw line area...can you send them to him? he will glady kook at them.

H
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Postby LR1234 » Fri Jun 26, 2009 11:58 am

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Postby IHateMS » Sat Jun 27, 2009 5:51 am

chrishasms wrote:I am an EDSS of 6.0. The more I am seeing the more I am thinking of going to Cali. I really want to walk again and not feel like crying when I do lol.


Wanna trade? I am an 8 or 9. :evil:
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Postby chrishasms » Sat Jun 27, 2009 6:11 am

\123
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Postby whyRwehere » Sat Jun 27, 2009 7:37 am

But, if it is ccsvi, you have fixed the AI issue before what causes the AI has been fixed, and that means it might start all over again. Not to be a downer, but it seems that way to me.[/b]
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Postby Lyon » Sat Jun 27, 2009 8:22 am

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Postby Sharon » Sat Jun 27, 2009 2:57 pm

Bob -
Buffalo has started the scanning already. They are taking appointments in Sept but they offered me July 14th - I can't go then. They are keeping the data for themselves since this is a study, but they will give you a disk with your mrv if you ask the technician. You'd then need to take it to another doctor for analysis and interventional surgery.


FYI
We have now verified that you will not be given the disk for the MRV unless there is something found which they are not looking for i.e. tumor. You can get the MRI disk.

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