CCSVI - our experience

My wife has been following the MS Recovery Diet since she was dx’d with a mild case of MS about 3 years ago. We found it to be a wonderful resource. On the diet, several small improvements were seen, and her 6 month MRI's have been stable.
I am commenting on Ann’s CCSVI blog:
I've been researching CCSVI for quite a while (I alerted Ashton Embry to it), and my wife had the procedure done 5 weeks ago. CCSVI promises to be an exciting new way to treat ms, and in my opinion, makes a perfect compliment to the diet.
The CCSVI procedure (aka as the 'liberation procedure') is extremely safe particularly when no stents are involved. Over 80% of MS patients examined have had jugular and or azygous blockages (my wife included). The procedure to do this - angioplasty - is very common, and done every day for various health problems. Some patients do report minor discomfort during the actual ballooning, but it‘s brief. A few of the very first Stanford patients who received stents did have lingering pain in their neck. There was one incident early on at Stanford where a stent came loose from the jugular and migrated into the heart, and surgery was required, and he‘s now recovering. This is the ONLY complication found in hundreds of procedures. If only ballooning is done, a migrating stent is a non-issue. As an aside, in Poland, Dr. Simka and his crew have done hundreds of procedures, many with stents, with no problems. The only fatality that is often mentioned was another early patient at Stanford who suffered a stroke while on the flight home after the procedure. It was agreed by all doctors involved that the stroke was NOT caused by the procedure, but perhaps the blood thinning medication exacerbated the stroke.
As for my wife - it was found that both jugulars were blocked, and ballooning was done. She did experience pain during the few minutes the balloon was inflated, but no other pain or complications. She was sent home 3 hours after the procedure. Her cold right hand immediately became warmer. Five weeks out, there have been some small changes - her L'Hermettes is less, and her morning spasticity is also less. She is still dedicated to the diet, and her outlook is now more hopeful. I strongly feel that everyone with MS should investigate CCSVI. As Ann mentioned, the DIRECT-MS website is a great resource, as is the thisisms.com website.

Here's another before and

Here's another before and after that shows walking:
before:
http://mymsliberationprocedure.blogspot.com/2010_04_01_archive.html

after:
http://mymsliberationprocedure.blogspot.com/

You have to take matters into your own hands. Start calling local interventional radiologists or vascular surgeons. I found an IR, got a consult with him and brought a three ring binder full of info and now he's working on getting a study going in town. You may have to get a script for your tests, but the first step is getting a doctor on board.

I am anxiously awaiting updates about when I'll be liberated! I'm sticking to the diet and I just started the walking drug (Ampyra) today - I remain ever hopeful that great things are coming. I have plans - to ride a bike, go to beach...

Susie

If you haven't already watch

If you haven't already watch these videos.........

I am totally dedicated to the diet. I am now scheduled for the procedure on June 23rd and terribly excited and hopeful.

http://www.communitycare.com/Practices/Interventional_Radiology/CCSVI.as...

This is an incredible homemade very short youtube link.

Before vascular angioplasty:

http://www.youtube.com/watch?v=JO3DnqHJfeM&feature=channel

After........

http://www.youtube.com/watch?v=KYNhYtVojSQ&feature=channel

and

http://www.youtube.com/watch?v=eNQnMsXxUg4&feature=channel

tzootsi Mary Beth, go to the

tzootsi

Mary Beth, go to the thisisms.com website, and then go to the CCSVI forum. There is a tracking thread with entries by people who have actually had the procedure. There is enough reading material on that forum to keep you busy for days!
ps: they also have a thread on diet.

Hi there! Thanks again for

Hi there!

Thanks again for your information! It is very helpful and you've inspired me to start making some telephone calls about this procedure locally. My biggest concern is my walking ~ my legs are getting pretty unsteady. Do you know if CCSVI has helped anyone with their walking?

Thanks again!

Mary Beth

My wife's neuro was somewhat

My wife's neuro was somewhat interested in CCSVI, but had nothing to offer. Therefore the way we went about this was to call the director of interventional radiology at a close by hospital. I was able to talk directly to him, and briefly explain what CCSVI was. He immediately got very interested, and wanted to see my wife. A few weeks later, she went in to see him, and he performed a doppler (ultrasound). He quickly picked up some turbulence in her left jugular. We then setup a date with him for the actual procedure, which went very smoothly, and our Blue Cross covered 90% of the charges, probably as a venous blockage problem.
If people want to explore this treatment, they need to get on the phone and start calling interventional radiologists and or vascular surgeons. At this point, most neurologists are not yet on board, and won't help (just as they don't recognize the diet!).
At this point, I would guess there have been about 1000 procedures done worldwide, and from what I can gather, a majority of patients have seen positive results.

Hello, Thank you very much

Hello,

Thank you very much for this information. It is very helpful and very hopeful and you have taken away some of the fears surrounding the operation.

Would you be able to tell us a little bit more about the procedure to get the operation? Did you work with your family doctor? My understanding was that these operations were being put on hold in North America until there was more testing done.

It would be helpful to just be tested to see if I do have the blockages.

Thank you, Mary Beth

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