I hope a doppler will be a good first step

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

Postby akaheather » Wed Jun 10, 2009 7:30 pm

Has anyone heard from Cure? (I hope no news is good news.)

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Postby CureOrBust » Fri Jun 12, 2009 5:25 am

akaheather wrote:Has anyone heard from Cure? (I hope no news is good news.)
Thanks for asking heather, I have been a bit busy with work the last couple of days, so I have not posted.

I also did not post as I was let down a little by the radiologist and the neurologist, as the neurologist only requested an MRV of the head; and as such would miss where all the "action" is most likely to be happening (and all the images below start to fade :evil: ).

Just for reference, I did get some interesting photos, which can be made to play like a video, so you see your head rotate in two different planes. ie if they had done the full area down to my diaphragm, i can see how it should be fairly easy to spot an irregularity. If anything, the resolution on the CD they gave me is not that high. I have included the images (although probably worthless for diagnosis, for peoples curiosity)

Here are 4 selected images (there are lots more, each at slightly rotated angles):
Side On
Image

Front on (really does not do justice to my high cheekbones, but I can see the similarities)
Image

Side On
Image
Front on
Image

I am planning on emailing Dr Dake, letting him know what's happened, and if he is still interested I will send him a copy of the whole disk. I will also be contacting the neuro to see if I can get it done again, but properly. I was kind of expecting them to miss something, just not miss doing it to my diaphragm. :(
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Postby Sharon » Fri Jun 12, 2009 6:31 am

Cure - what a tangled mess of webs you have :lol: (just kidding). How disappointing that you did not get the imaging done which you wanted. Hopefully, Dake will be able to help you out.
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Postby peekaboo » Fri Jun 12, 2009 6:55 am

Your doppler looks quite different than mine....I had no spaghetti but just 2 veins in the rear of my head shaped like goggles and then of course the jugs...the contrast between black & white was much clearer...no mist

(maybe i'm missing some brain cells :) )

Azygos problems for me was found in the floroscope during surgery...
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Postby mrhodes40 » Fri Jun 12, 2009 7:31 am

cheekbones
I keep trying to get them to do my MRI MRV's from my better side too..no dice :lol:

It looks different than mine as well. Mine seemed to have more of a deep vein view the bigger deeper veins and not so much of the nework on the skin which appears to be what is going on in your maybe? I do not know anything at all about this subject at all but mine looked more like this

http://www.neurologyindia.com/getarticl ... _275_11074

On yours the jugs a look almost like a shadow instead of lighted up big and clear? I will be interested to hear What Dr D says about it

How was the IV part?
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
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Postby peekaboo » Fri Jun 12, 2009 7:44 am

Maire's pics (bottom 2) Looked like mine too...I am a MS copy cat :?
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Postby cheerleader » Fri Jun 12, 2009 7:50 am

Cure, you handsome devil!
your pics look like the superficial/facial veins....Jeff's looked like the pics Marie linked to- only showed the major internal veins.
Dang!!!! Hope you can get some info out of these. They're certainly suitable for framing!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Fri Jun 12, 2009 7:54 am

Maybe its a timing thing like they took the pictures a moment too soon before the bigger internal veins were lighted up. It is a lot different looking though.
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
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Postby mrhodes40 » Fri Jun 12, 2009 7:56 am

BTW Cure you are having to work way too hard for this, I am really bummed for you :? geez...........
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
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Postby chrishasms » Fri Jun 12, 2009 8:22 am

123
Last edited by chrishasms on Sun Dec 06, 2009 12:24 pm, edited 1 time in total.
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Postby whyRwehere » Fri Jun 12, 2009 9:01 am

I'm just guessing, but I think they weren't focused deep enough.
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Postby peekaboo » Fri Jun 12, 2009 9:35 am

my thoughts exactly...maybe a higher strength 7 tesla?
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Postby mrhodes40 » Fri Jun 12, 2009 9:37 am

ANd this maybe goes to show how variable these things are. We lay people think of these tests as very black and white: get an MRV see what you need to. Get a doppler and see if you have blockages.

It is clearly more complicated than that...

I guess that's why MRI technicians go to school for a few years........ Dr Dake was pretty involved with Jeff's MRV and he had just given an inservice to the staff when I got mine to explain what was up and exactly what he needed. There was a whole gang in the dark screen room talking and discussing mine when I headed out of the tube.
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
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Postby Sharon » Fri Jun 12, 2009 10:27 am

Marie wrote:
when I got mine to explain what was up and exactly what he needed. There was a whole gang in the dark screen room talking and discussing mine when I headed out of the tube.


When I was in the tube, there were different voices talking to me - I thought this was odd because there was just the technician and me when I went in. Well, as I had posted before - the technician was wondering what was going on - he said there have been more doctors in here telling me what to do (I had my MRI/MRV at the Blake Wilbur clinic - Jeff, Marie, and Holly had theirs at the main hospital). He told me that was why I heard the different voices, they were all wanting more and more images - I guess they kind of invaded the technicians space!
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Postby whyRwehere » Fri Jun 12, 2009 10:35 am

this is about MRIs, but it's worth reading to get an idea of what one might encounter with different technologists...
http://www.boston.com/news/education/hi ... an/?page=1
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