Need Your Advice - Procedure Next Week

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

Need Your Advice - Procedure Next Week

Postby westcoastgirl » Wed Nov 28, 2012 10:51 am

Hi, My procedure is scheduled for next week. During the days before and after my procedure ...

What to Do (for example colon cleanse, specific supplements, foods, etc)?
What to Avoid (supplements, foods)?
Activities to avoid?
Do I need to lay down as much as possible the first few months post-procedure?

Background info: I'm 45 years old and was recently diagnosed with MS. I'm totally new to all this. I'm not taking meds or supplements yet. I'm mobile, but have major fatigue, along with bladder issues, electric shock pains in my head, MS Hug, ears ringing, etc.

I want the procedure to work so badly. I know it won't solve everything though. Do you have any advice on what I should be doing or not doing, anything that would help my chances of it working and avoiding restenosis?

Thanks,

Jane
Last edited by westcoastgirl on Wed Nov 28, 2012 2:44 pm, edited 2 times in total.
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Re: Any Tips for Days Before & After Treatment?

Postby DougL » Wed Nov 28, 2012 11:51 am

just my opinion.

here are a few i can think of

before
- lower your expectations. this is not a cure for MS.
- follow docs orders such as blood thinners
- keep a detailed log of exactly how you feel and what is going on in your body so you can compare it to after the procedure.
- get a friend to also watch you, they will notice things you don't
- lower your expectations. this is not a cure for MS

After
- do not fly for as long as you can
- follow docs orders such as blood thinners
- do everything you can to keep healthy - diet, exercise
- keep on your MS drugs
- get followup care
- come to TIMS and tell us how great you are doing

Good luck.
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Re: Need Your Advice - Procedure Next Week

Postby Rosegirl » Wed Nov 28, 2012 5:57 pm

Contact the doctor for pre- and post-procedure recommendations. Be sure to get copies of all documents and images BEFORE you leave after the procedure because if you require follow up, it may well be by your local doctor, not the doctor who did your procedure.

Good luck!
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Re: Need Your Advice - Procedure Next Week

Postby cheerleader » Wed Nov 28, 2012 7:02 pm

hi westcoast girl--
Here are some ideas we put together at CCSVI Alliance.
http://www.ccsvi.org/index.php/helping- ... -aftercare
take care,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Need Your Advice - Procedure Next Week

Postby Cece » Wed Nov 28, 2012 7:13 pm

I want the procedure to work so badly. I know it won't solve everything though. Do you have any advice on what I should be doing or not doing, anything that would help my chances of it working and avoiding restenosis?

The thing is that there are people with no improvements (terrible disappointment) and there are people for whom it really does seem to solve everything (tremendous joy). And everywhere in between. There's no real way to predict. So I wouldn't say that it won't solve everything (it might) or that you will definitely have improvements (you might not).

The advice I'd consider:

Start working out daily, starting right now. Exercise may lead to healthier endothelium and blood composition and may lead to better healing after the procedure.
Eat healthy.
Follow your doctor's advice about anticoagulation. You could ask if a daily baby aspirin is also appropriate, if that's not already prescribed.
Baby your health, be self-nurturing, don't stress.
Drink lots of water.

Whether or not restenosis will occur will depend more on your doctor's choices during the procedure than on anything you do before or after. The doctor might under-dilate, which would result in restenosis. Or he might not prescribe appropriate anticoagulation, which would put you at risk for clotting. Or he might over-dilate, putting you at risk for vein injury. Different doctors have vastly different techniques. I believe that the biggest choices we make are, first, the choice to get the procedure and, second, the choice of which doctor. There are doctors with hundreds of procedures experience and doctors without. The procedure has not been standardized. My biggest advice would be to make sure you know your doctor's answers to some of the big questions on technique (how does he choose balloon size, what anticoagulation is used, how long is a balloon kept inflated, how is ivus used, which veins are investigated).

CCSVI.org is a very good resource too. Wishing you luck and health, westcoast girl. My other advice is to have a follow-up appointment already arranged for a month post-procedure. That's earlier than most doctors suggest but it's within the window of opportunity to remove a clot manually if a clot were to have formed, before the clot has hardened and reorganized.

More theory-based advice that might not be practical is to spend as much time as possible in the week or two post-procedure lying down. Jugulars are open when you're lying down, but the jugulars close down to nearly one tenth their size or less when you're upright. The more flow through the jugulars, the better they'll heal. The more hydrated you are, the more flow there should be. The more you exercise, the more flow there should be.
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Re: Need Your Advice - Procedure Next Week

Postby AMcG » Thu Nov 29, 2012 10:15 am

I think Bill Codes advice which he gave in Winnipeg in March 2011 is good. He called it the anti-inflammatory supplement approach.

10,000 iu vitamin D at least a month before and six months after. If you are pregnant 2000-4000 all through the pregnancy.
Fish oil: More than 3000mg of DHA and EPA
Curcumin 3000mg

Those are daily doses. He also mentioned emu oil.
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Re: Need Your Advice - Procedure Next Week

Postby 1eye » Thu Nov 29, 2012 11:43 am

I don't believe in advising, as I ain't no doctor. I have not seen one outcome mentioned, and I hate to be pessimistic, but remember there have been rare cases when it made the person appreciably worse. That doesn't seem at all common, but I guess if you have gotten this far you know that. Personally, having the disease myself, and having had the procedure, I think it is worth the risks. But you will have to be in charge of that.

I hope you get the best possible result, and no complications. Schedule your follow-ups before you leave!
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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