opinions please of this MRV? (it's me)

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

opinions please of this MRV? (it's me)

Postby Brightspot » Sun Feb 21, 2010 10:16 pm

Does it look like stenosis to anyone else? Am bringing this photo to my GP tomorrow and will ask her to send me to someone for further investigation. Got the MRV done in Mexico after finding out that I am listed for March of 2011 in Poland. Any comments from those of you more experienced with MRV interpretation will be greatly appreciated!

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Last edited by Brightspot on Sun Feb 21, 2010 11:11 pm, edited 1 time in total.
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Postby California » Sun Feb 21, 2010 10:24 pm

Do you have image of a different angle?
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Postby costumenastional » Mon Feb 22, 2010 12:39 am

To my totally untrained eye looks like a stenosed right jug...
But please take it further to a specialist and dont forget to let us know who it went.

Good luck.
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Postby mangio » Mon Feb 22, 2010 10:59 am

bspot,
do you have the coronal angle?
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Postby Brightspot » Mon Feb 22, 2010 1:33 pm

Hi California
I do have that pic from a different angle. The MRI show it about 180 degrees. It looks normal in about half the shots, and like the one posted in the other half. Not very computer capable, but will try to post a couple more.
Mangio
I think I do have a coronal angle (that is looking down from the top isn't it?) will try to post a couple.
Costumenational
I thought it looks like a sentosis too.

FYI
Took the MRV to my GP today, and she reluctantly looked at the series from the picture I posted. She said it looks like it could be a stenosis, but that for all she knows it could be nothing. She (again reluctantly) agreed to try to find a vascular surgeon to assess the MRV. I will make another appointment with her for next week to make sure she is following up with the referral.
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Postby mangio » Mon Feb 22, 2010 6:00 pm

Brightspot, back.

Looks like you have something indicative near shoulder area.
Dr. Zamboni's notes from NYU are on CCSVI MS Toronto.

If you haven't seen Ginger's MRV films they might be a great reference -
http://www.Iamsickofms.blogspot.com - I really like her blogsite.

Also radiology at Wayne State Radiology has a good site up with lots of great
pictures - http://www.med.wayne.edu/.
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Postby PCakes » Tue Feb 23, 2010 2:37 pm

Hi Mangio... could you guide us on the Wayne State site to the images you mention. Thanks, PCakes
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Postby Brightspot » Wed Feb 24, 2010 4:45 pm

First I wanted to clarify that I am not trying to turn this into a diagnostic site, I am just trying to identify some images that might get my doctor to pay attention. I have no idea if the image I posted really shows a stenosis, but it sure looks like a narrowing of one vein to me. I have been studying the MRV frame by frame, and looking at whatever else I can find to compare it to (Ginger, Sammy Jo, Manoj, thanks) and searching out medical sites that give some info. on how to interpret these things.

Here is how my discussions of CCSVI with my GP have gone so far:

First appointment (before the American study was released)
She said there had only been one study done and that we are 10 or 15 years away from knowing if there is anything to CCSVI.
She mentioned that another of her patients was determined to seek diagnosis and treatment at Stanford. She all but rolled her eyes, and made it clear she thought that was foolish.
She said that she had no idea who she could refer me to.

Second appointment (after release of American study)
She mentioned that she thought they were looking for plaques (indicating she had no idea about CCSVI and had not seen any of the news or other reports about CCSVI)
She was not interested in the MRV which I had done in Mexico.
She read the english translation of the Conclusions part of the report and dismissed it. (I posted the conclusions on another thread started by someone else)
She did not know who she could refer me to and suggested I ask my neurologist to refer me to someone if I wanted to follow up with the MRV.

Third appointment
She reluctantly looked at the series of images including the one I posted at the beginning of this thread. She admitted that there could be a problem, but that it could also be nothing.
At my insistance she agreed to refer me to a vascular surgeon.
She has not followed up with this 3 days after my appointment.


Have copied a few more images...have never used a social networking site of photosharing site before...so it is slow work..copying images, painting over the name (not comfortable with my name being published), then one by one, sending them to photobucket, then posting them here. There is probably a better way, but I am not computer saavy, or wise in the way of the web!


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Image[/img]
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Postby Brightspot » Wed Feb 24, 2010 4:47 pm

Yikes! Images are pretty large, but it is the best I could do.
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Postby mangio » Wed Feb 24, 2010 5:36 pm

PCakes,
how are you doing? glad to hear from you,
I will put something in your PM, just got to get some snacks on for
the hockey fanatics.
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Postby mangio » Fri Feb 26, 2010 3:42 pm

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Postby PCakes » Fri Feb 26, 2010 4:03 pm

Hi Mangio.. thanks for the links.. will check them out right away... I am well and hope you are too... :)
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Postby Rose2 » Fri Feb 26, 2010 4:17 pm

Hi BrightSpot!
I have seen many of my own MRVs and I am so impressed with all of you who can make heads or tails of these images.
Honestly, I know what to look for in my own only because Dr. Dake pointed and said this is what this is. I remember my fat collaterals were brigher before the procedure and not so much after. But they all look like worms to me.
Why did you have the MRV in Mexico? and are you having an MD in that same facility read and diagnose your films?
Was it in Mexico City? Are they getting interested in CCSVI there? I may be the last to know this. Sorry if I am behind in knowing.
Glad you got scans and seem to be started. I am just curious as to who is training to read/diagnose for CCSVI.
This has seemed to be the biggest hurdle. Who is going to teach those who need to learn the nuts and bolts of CCSVI.
Just wondering. There sure is alot of globe trotting with this isn't there?
Sincerely, Rose ;))
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Postby mangio » Fri Feb 26, 2010 4:34 pm

PCakes, forgot to mention the incredible short videos on the Karolinska site. The ventrical endovascular intervention is really neatto watch.
The camera
right in the ventrical filming the opening of a membrane.

The arterialvenous malformation short video surgery is also terrific.
Do we have those kind of veins? Watch how unbelievable those
tiny tiny capillaries are in the choroid plexus. Couldn't help wonder if
they are damaged as well with CCSVI - my eyes are bloodshot.
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Postby Brightspot » Fri Feb 26, 2010 9:16 pm

Hi Rose2
Went to Mexico to get an MRV when I heard it was available from another post. The radiologist has no special training in CCSVI but was willing use the published protocols. I am now on a mission to get my GP to refer me to someone who can interpret the MRV or to find a consultant anywhere who will look at the DVD of the MRI and interpret it. I sent an email to the Doctor in Birmigham today, asking for a consultation.
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