CCSVI patients' log

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

Postby Sharon » Sun Jun 07, 2009 1:31 pm

Randi wrote
I do have an MRI CD all ready to share with Dr. Dake. (I personally have always avoided looking at the images. Just never wanted to see the lesions -- until now.)


A suggestion: send a copy of your CD and any other medical reports to Dake before you go. He had reviewed mine and was able to immediately compare with the Stanford tests. I did not meet Dr. Dake until the consultation and that was after all the tests were completed. I guess he talked to me when I was in the MRI tube, but he did not "introduce" himself through the microphone so I was unaware that he had been onsite.
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Postby peekaboo » Sun Jun 07, 2009 3:47 pm

hey i thought this was a patients log :?
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Postby cheerleader » Sun Jun 07, 2009 3:59 pm

peekaboo wrote:hey i thought this was a patients log :?


Ha! You're right, Holly. Very hard to stay OT with so much going on.

Who is going next? Who is there now? Anyone...hello....
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Sun Jun 07, 2009 4:04 pm

Holly - that is why I started the thread "getting ready for Stanford" - this log was getting off subject. I think we are back on track now :wink:


Take care
Sharon
Last edited by Sharon on Sun Jun 07, 2009 4:32 pm, edited 1 time in total.
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Postby chrishasms » Sun Jun 07, 2009 4:12 pm

123
Last edited by chrishasms on Sat Dec 05, 2009 6:01 pm, edited 1 time in total.
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Postby Sharon » Sun Jun 07, 2009 4:19 pm

Cheer - I am not sure who goes next. Is it Marie's friend? Let's get some dates posted.
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Postby mrhodes40 » Sun Jun 07, 2009 5:25 pm

She's gpong July 6--my friend island girl who never managed to register here-computers are not her forte
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 cheerleader » Sun Jun 07, 2009 5:47 pm

mrhodes40 wrote:She's gpong July 6--my friend island girl who never managed to register here-computers are not her forte


Jeff will be there July 6 for his new MRIs and MRVs...we'll have to make sure they meet each other, Marie!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby CureOrBust » Sun Jun 07, 2009 5:51 pm

Sharon wrote:Cheer - I am not sure who goes next. Is it Marie's friend? Let's get some dates posted.


I recently tried to find all the dates, and this is what i came up with:
Jeff DONE
Marie DONE
Sharon June 1st -- DONE
peekaboo Jun 3rd -- DONE
---------------
Marie's friend June 6th
Hub 's Wife June sometime ??????
SkyDog June 29
Loobie July 13.
Arcee July 14.
Chris ??????
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Postby zap » Mon Jun 08, 2009 8:10 am

Sharon wrote:He really did think I would have something in the asygous (even though a blockage did not show in the MRI/MRV) --that is why he went in twice to the asygous during the procedure. Sounds like something similar with Holly.


Anyone else find is somewhat disconcerting that even with our best docs and best scans, some of these blockages might not be detected ... any idea why this is?

What position is the body in during the scan - could it be related to how the body naturally collapses the veins that are not in use in certain positions perhaps?
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Postby Sharon » Mon Jun 08, 2009 8:22 am

Zap -
Anyone else find is somewhat disconcerting that even with our best docs and best scans, some of these blockages might not be detected ... any idea why this is?

What position is the body in during the scan - could it be related to how the body naturally collapses the veins that are not in use in certain positions perhaps?


Dr. Dake was looking for something in the asygous because of lesions in my cervical spine (look at Cheer's image she which is shown a few posts ago). I think this was based on some of Zamboni's thoughts. But, in my case all the puzzle pieces fit - my long blockage in the jugular is parallel to the lesions (C4-C6) in my cervical spine. Holly presented with an asygous blockage - we need to ask her where her spinal lesions were - maybe at C-7 or in the thoracic.
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Postby cheerleader » Mon Jun 08, 2009 8:25 am

zap wrote:
Sharon wrote:He really did think I would have something in the asygous (even though a blockage did not show in the MRI/MRV) --that is why he went in twice to the asygous during the procedure. Sounds like something similar with Holly.


Anyone else find is somewhat disconcerting that even with our best docs and best scans, some of these blockages might not be detected ... any idea why this is?

What position is the body in during the scan - could it be related to how the body naturally collapses the veins that are not in use in certain positions perhaps?


Zap-
Holly was only allowed a jugular scan by her insurance, she never had an azygos scan...Dr. Dake found her azygos blockage once he was in her body with the catheter. Her MRV scan was correct for her jugulars- she had blockage there, too.

Sharon did not show any azygos blockage, and she had none once Dr. Dake was inside. Her MRV scan was correct, too. She only had jugular blockage.

The scans have been correct for the first 4 patients...
Dr. Dake is extremely scrupulous is looking for blockages once inside the body, since he wants to make sure none are missed. No technology is 100% accurate, but so far, the MRVs have all been correct.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby zap » Mon Jun 08, 2009 8:35 am

Ah, thanks for clarifying! So much to keep track of in here, hard when you're not reading daily ...
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Postby Sharon » Mon Jun 08, 2009 8:59 am

Zap - Ditto to Cheer's remark that Dr. Dake is extremely scrupulous - he called himself meticulous. Dake was not going to let anything go unchecked - during the procedure he also checked the right jugular along with the asygous. Both of those veins showed no blockage on the MRI/MRV - Dake wanted to check them out for himself. Dake is the same in the consultation - he takes as much time as needed. Oh, just thought of something - my procedure was delayed by a few minutes because Dake was rechecking alll of his procedure orders. The pre-op head nurse just shook her head - she said you could never hurry D. Dake - he would tell you when he was ready. This is nice to hear when you are the patient.
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Postby Hub » Mon Jun 08, 2009 11:31 am

Last edited by Hub on Thu Mar 04, 2010 1:06 am, edited 1 time in total.
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