What should I do now?

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

What should I do now?

Postby codefellow » Wed Jan 13, 2010 9:27 am

Early in my wife's diagnosis, two of her neurologists were honest enough to tell her the CRAB drugs would provide little if any relief, and the side effects could be worse than the disease. We made a conscious decision not to use them, and to this day she does not regret that decision.

Ten years later she is bedridden and cannot move anything below her neck. She has a colostomy bag, an in-dwelling catheter, and a feeding tube.

Believe it or not, she is still very smart and mentally active. (Her MS seems to only be spinal). With assistance, she shops on ebay, works on her novel or screen play, helps pick colors for renovating our house, etc.....
I have never known anyone with more courage.

I am very excited about CCSVI, but I am worried she may be too far gone for the Liberation treatment to provide any relief. I have told her a little about it, but she is still recovering from her last surgery and not in a mood to even see the video. (Really hates doctors.)

My impulse is to take a "wait and see" approach. I live in New Orleans, so it may be a long time before the technology to even test for it is available here. But what is interesting is she has had unexplained anemia, trouble swallowing, etc...sound familiar?

Should I see if I can get her primary to send her to a cardiovascular surgeon now? Or just wait and see until CCSVI clinical trials are finished?

Advice, suggestions, appreciated.
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Postby happy_canuck » Wed Jan 13, 2010 10:38 am


Your efforts to reach out on behalf of your wife are admirable. We all feel this sense of joy and apprehension over CCSVI. I am excited because this is the first truly positive development I have seen (although I did elect to go on Rebif in 2002), but we many of us are now in a waiting mode for the testing and treatment to become broadly available.

I just wanted to mention that I have battled anemia for years, culminating in a major bout, several secondary infections, and surgery last Fall. Because I don't eat meat, everyone assumed it was my diet. But I do eat shellfish, which, it turns out, can have even more iron than beef. So now I take iron supplements because anemiz made me far more ill, in combination with my MS, than I have ever been before.

And yes, I have trouble swallowing too. It is getting progressively worse and I have to be careful every time I eat or take pills.

I'm sure you know this, but MS, anemia, and trouble swallowing are all "high risk" factors for complications from the flu. You must be very diligent to keep flu germs away from your home and wife!

In terms of CCSVI, I believe if it is possible to stop the venous flow deficiencies, that must surely help everyone. Just because one nerve pathway is damaged does not mean our brains won't slowly re-wire now that they don't have circulatory issues to deal with! The very criticism some have levelled at Dr. Zamboni's work ("it's too soon to tell") means we don't know the full BENEFITS either.

I wish you and your wife well. Stay strong!

~ Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby JoyIsMyStrength » Wed Jan 13, 2010 4:52 pm

Sandra that was so well stated. You are obviously kind, compassionate and articulate.

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Postby cheerleader » Wed Jan 13, 2010 5:53 pm

As a fellow caregiver, I read some stuff you wrote that made me think twice...your wife just had a surgery, she's probably exhausted from that and she's not too fond of doctors. Hmmmm.

As healthy spouses, we have to be careful how to tread in this area. Jeff and I had many discussions about his MS...and sometimes he got really angry at me for trying to fix him, or figure out his disease. And he was right. Ultimately, he was the one who had stents put in his jugular veins, and he had to endure the procedure, post op and risks. It wasn't about me...

That said, if there is a chance your wife has a venous disorder, maybe she might agree to be tested. I would go to interventional radiologists, and bring the Zamboni research and Dr. Haacke's website info to start a dialogue. Here are some suggestions in your area.
(Believe it or not, this works. Many IR docs across the US are stepping up and testing and treating patients today. ) Your city has the technology and docs with the right skills to test for CCSVI.
http://www.ochsner.org/services/interve ... radiology/
wishing the best for you and your dear wife-
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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