question for Colorado MS'ers and CCSVI

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

Postby kathryn6112 » Sun Jan 10, 2010 10:13 pm

HighHopes - where are you getting your MRV and ultrasound done in Ohio? I haven't heard about anyone in Ohio doing CCSVI testing - I would love to be tested, no matter how far it is from home! Thanks.

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Postby Sharon » Mon Jan 11, 2010 7:51 am

Kathyrn -

Highhopes has a family member who is a radiologist - is able to get testing done with their help.
Hopefully, Highhopes will be lurking to see your post to give a more complete answer

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Postby highhopes » Mon Jan 11, 2010 9:45 am

JEEZ! i just typed out an elaborate answer to your question, kathyrn, and i wiped it all out by editing a space between two words! DOH!

PM me with any specific questions...

i WILL, however, report everything that i find out with the people on this board. i have put in over two months of hard work to get to this stage and i will report EVERYTHING i can to others without compromising the doctors and techs professional integrity...

CCSVI is still so new that i have been lightly treading on eggshells the entire time with regards to getting tested and dilation or stenting.

i recommend studying up on all aspects of CCSVI and treatment. being informed and being on an equal and level playing field with your doctor is the first step to getting closer to your goal!

good luck!
Last edited by highhopes on Mon Jan 11, 2010 10:58 am, edited 1 time in total.
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Postby aliyalex » Mon Jan 11, 2010 10:09 am

I am in So Central Co. I have been staying up researching CCSVI most nights. Dx. with MS in 2003, I am non-ambulatory and feeling the truth of this vascular revelation.

I am happy to be sharing in everybody's courageous journeys. Thank you for your heroism. I sense that it is not just for each individual, but also for the collective angst of this illness that people are exploring this.

I have never before seen "strength in numbers" demonstrated as well as it is now happening. And it is so needed. Aliyah
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Postby highhopes » Mon Jan 18, 2010 11:03 am

i am sitting in the radiologist's offfice/reading room of the hospital that i was able to get an MRV done at. the results were astonishing!!! i have yet to transfer the images to a universally viewable file format, but my left jugular is NON-EXISTANT and my right is over 70% stenosed.

the techs had trouble pinpointing reflux through doppler ultrasound due to no experience on the venous side of things and relatively no blueprints for how to carry out the scan. i gave the techs dr. haacke's protocol through a printed .pdf and having little experience on venous issues, really didnt know what they were looking for.

BUT, the MRV showed SIGNIFICANT finds with regards to the internal jugulars.

as soon as i am able to save the images as .tif files, i will post them here. i truly want to do this for everyone, not only myself. but with my MRV being so extreme from the images that ive seen before mine, i feel that it is absolutely essential that interested parties see them.

now the next step is to get treated before obamas health care system moves into effect...

happy and hopefull,

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Postby Cece » Mon Jan 18, 2010 11:31 am

highhopes wrote:i am sitting in the radiologist's offfice/reading room of the hospital that i was able to get an MRV done at. the results were astonishing!!! i have yet to transfer the images to a universally viewable file format, but my left jugular is NON-EXISTANT and my right is over 70% stenosed.


How amazing it is to have answers!!! May your treatment be swift and successful.
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Postby Sharon » Mon Jan 18, 2010 8:45 pm

Highhopes - thank you for posting your results from the MRV. I am in amazement - no left jugular and a severely occluded right jugular. Your pictures will tell the story. And, thank you for moving forward - you have become another pioneer in our CCSVI journey.

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Postby jay123 » Tue Jan 19, 2010 5:02 pm

Highopes - that is great you had a family member that could get you the scans.

But everyone please think about why would you spend money on testing? You need to find interventional radiologists to order the testing and the 'repair' for you. Testing will do nothing, if the statistics continue to add up there will be a 90-95% chance you have a problem.
Save your money and find a fixer! Don't waste time askinging neuros, Write Letters to interventional radiologists!!!
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