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LR1234 · Post by **LR1234** » Tue Jul 14, 2009 10:12 am

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peekaboo · Post by **peekaboo** » Tue Jul 14, 2009 10:16 am

LR - great news from Dr. D...I would contact your specialist and forward Dr. D's info. Your specialist probably doesn't know what/where to look for and hopefully Dr. D's analysis can guide your specialist. If he/she doesn't want to play...get another opinion

sou · Post by **sou** » Tue Jul 14, 2009 10:19 am

Hi.

That's exciting news! I mean that you have found your answers, not happy that you have MS and stenoses. We are going to see many false negatives till our physicians are properly informed.

sou

whyRwehere · Post by **whyRwehere** » Tue Jul 14, 2009 10:26 am

Well, as you probably read already, my husband was seen by 2 doctors using an echodoppler. One saw nothing unusual, but is that because she was not that familiar with the research and felt the differences to normal scans was just "normal"? The other saw a major problem with the left Jugular and narrowing of the vertebrale veins....azygous issue. He is an expert with dopplers and knows about the ccsvi research. It seems to me that the UK opinion was, " this shouldn't be a problem, so there isn't one"....
The frustrating part is affording to get something done when you don't have the insurance in the USA...the french doctor guessed opinion might improve after the Autumn...I hope so, but we could use the relief now.

LR1234 · Post by **LR1234** » Tue Jul 14, 2009 10:33 am

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peekaboo · Post by **peekaboo** » Tue Jul 14, 2009 10:37 am

yes nickle....wobblt got the balloon clean up

mrhodes40 · Post by **mrhodes40** » Tue Jul 14, 2009 12:21 pm

oops sending PM

gibbledygook · Post by **gibbledygook** » Tue Jul 14, 2009 12:37 pm

This is GREAT news LR. I hope Marie's contact comes through and I'm about to pester Dake again for his contacts at St Thomas'...so hopefully someone can help sort out your blockages...

LR1234 · Post by **LR1234** » Tue Jul 14, 2009 12:45 pm

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CureOrBust · Post by **CureOrBust** » Wed Jul 15, 2009 1:46 am

LR1234 wrote:Well, I just got an e-mail from Dr Dake and he CAN SEE stenosis in my scans. He has mentioned 3 areas: both jugulars at C2 and lower down as it enters the brachiocephalic vein there is a significant narrowing.
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Edited later: I sent CT and MRV scans to Dr Dake, having the dopplers soon in the UK.

Did Dr Dake identify the Stenosis in the MRV or the CT's?

As for the cost, I would GUESS that when Zamboni releases his procedures, they will be considerably cheaper, and also more easily performed by local practitioners. Remember, its all just a guess.

Another source of doctors, may be attaining a list of doctors that will be attending the Monaco event, or are actually organising the event. I have actually stumbled across someone locally (as in around the corner), who says he is on the organising committee, and was referred to Brainteaser (the source of the stumble) by Zamboni as a possible lead in Australia. Checking if the "committee" involves a doctor in your region may be an option; I haven't even checked if they do publish these details, just a random thought.

LR1234 · Post by **LR1234** » Wed Jul 15, 2009 2:21 am

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patientx · Post by **patientx** » Wed Jul 15, 2009 3:29 am

L,

I think it would be interesting to hear what your current doctor has to say about the information from Dr. Dake - why the difference in interpreting the scans.

LR1234 · Post by **LR1234** » Wed Jul 15, 2009 3:38 am

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sou · Post by **sou** » Thu Jul 16, 2009 5:09 am

I tHink that modern stents are made of titanium alone, because nickel was considered to cause re-stenosis.

sou

Loobie · Post by **Loobie** » Thu Jul 16, 2009 5:55 am

Dake uses nickel stents.

This Is MS Multiple Sclerosis Knowledge & Support Community

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Re: LR1234 opinions please