.....

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

.....

Postby LR1234 » Tue Jul 14, 2009 11:12 am

,,,,,,,
Last edited by LR1234 on Tue Mar 06, 2012 8:20 am, edited 2 times in total.
LR1234
Family Elder
 
Posts: 1492
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Advertisement

Postby peekaboo » Tue Jul 14, 2009 11:16 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 :idea:
User avatar
peekaboo
Family Elder
 
Posts: 627
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby sou » Tue Jul 14, 2009 11:19 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
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
User avatar
sou
Family Elder
 
Posts: 582
Joined: Sat Dec 20, 2008 4:00 pm
Location: Greece

Postby whyRwehere » Tue Jul 14, 2009 11:26 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.
User avatar
whyRwehere
Family Elder
 
Posts: 907
Joined: Mon Oct 03, 2005 3:00 pm

Postby LR1234 » Tue Jul 14, 2009 11:33 am

........
Last edited by LR1234 on Tue Mar 06, 2012 8:20 am, edited 1 time in total.
LR1234
Family Elder
 
Posts: 1492
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby peekaboo » Tue Jul 14, 2009 11:37 am

yes nickle....wobblt got the balloon clean up
User avatar
peekaboo
Family Elder
 
Posts: 627
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby mrhodes40 » Tue Jul 14, 2009 1:21 pm

oops sending PM
Last edited by mrhodes40 on Tue Jul 14, 2009 1:42 pm, edited 2 times in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 3:00 pm
Location: USA

Postby gibbledygook » Tue Jul 14, 2009 1:37 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... 8)
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
User avatar
gibbledygook
Family Elder
 
Posts: 1408
Joined: Mon Feb 14, 2005 4:00 pm
Location: London

Postby LR1234 » Tue Jul 14, 2009 1:45 pm

........
Last edited by LR1234 on Tue Mar 06, 2012 8:20 am, edited 1 time in total.
LR1234
Family Elder
 
Posts: 1492
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Re: LR1234 opinions please

Postby CureOrBust » Wed Jul 15, 2009 2:46 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.
.....
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.
User avatar
CureOrBust
Family Elder
 
Posts: 2871
Joined: Wed Jul 27, 2005 3:00 pm
Location: Sydney, Australia

Postby LR1234 » Wed Jul 15, 2009 3:21 am

........
Last edited by LR1234 on Tue Mar 06, 2012 8:20 am, edited 1 time in total.
LR1234
Family Elder
 
Posts: 1492
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby patientx » Wed Jul 15, 2009 4:29 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.
User avatar
patientx
Family Elder
 
Posts: 1068
Joined: Wed Sep 10, 2008 3:00 pm

Postby LR1234 » Wed Jul 15, 2009 4:38 am

.........
Last edited by LR1234 on Tue Mar 06, 2012 8:21 am, edited 2 times in total.
LR1234
Family Elder
 
Posts: 1492
Joined: Wed Feb 11, 2009 4:00 pm
Location: California

Postby sou » Thu Jul 16, 2009 6:09 am

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

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
User avatar
sou
Family Elder
 
Posts: 582
Joined: Sat Dec 20, 2008 4:00 pm
Location: Greece

Postby Loobie » Thu Jul 16, 2009 6:55 am

Dake uses nickel stents.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users