David1949 - 6 month update

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

David1949 - 6 month update

Postby David1949 » Tue Oct 30, 2012 2:14 pm

It's been 6 months since I had the venoplasty treatment in Chicago. So how am I doing?
I think I've had more energy since the procedure and I did a huge amount of yard work around the house this summer. I never thought I would be able to do those things again. But the drop foot and weakness in my left leg seemed to be unchanged.

On August 13, I started a gluten free diet. Now I seem to be seeing some subtle improvements;
1) Previously I could not cross my left leg over the right without using my hands to lift the leg.
Now I can usually do it without using my hands.

2) I participate in the CCSVI Tracking website. There are a number of tasks you have to complete each month to measure your improvement. One of the tasks is a 6 meter walking test. You sit in a chair then start your stopwatch, get up and walk around an object placed 3 meters in front of you, walk back to the chair, sit down and stop the watch. Initially it took me over 20 seconds. Since starting the gluten free diet the time has now dropped to 13 seconds. That's an empirical test.

Could the changes be placebo effect? I don't think so.
Are the changes due to venoplasty or the diet? The doctor who did my procedure said any changes resulting from the procedure would happen within 1 month. Anything after that would be due to something else. So maybe the increase in energy is due to the procedure. But the improvement in the walking test occurred 5 months post procedure. That lines up with the timing of the diet.
Could it be the improvements are the result of cooler weather? Maybe. We'll have to see how I do next summer.
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Re: David1949 - 6 month update

Postby Cece » Tue Oct 30, 2012 2:53 pm

David, I thought you were a nonresponder! This is better news.
Did the procedure help you to have the energy to initiate the gluten-free diet? If there is special cooking and grocery-shopping, that takes effort. Good builds upon good.

I don't agree with the notion that only changes in the first month are due to the procedure. Those would be the more immediate results of vascular outflow improvement. But then there can be gradual neurological healing thanks to the healthier brain environment. I believe this is what I experienced, and I hope it is common.

Keep us posted. I'm liking from the cooler weather too.
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Re: David1949 - 6 month update

Postby cheerleader » Wed Oct 31, 2012 7:04 pm

Glad you're doing better, David. Great news!!!
The way I've started to see this is as positive results from a "virtuous cycle." Like Cece says, good builds on good. You have more energy and sleep better, thanks to better cerebral perfusion. This affects mood, relieves depression, and you can think about being proactive. So, you eat better, maybe start exercising, become more social. All of this helps you physically and mentally. Your blood vessels work better, due to shear stress, better diet, and healing can happen.

Of course, this is just a theory---but it seems to be happening to Jeff....he just keeps getting better.
keep us posted, David---all best,
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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