Nearly 3 months post procedure

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

Re: Nearly 3 months post procedure

Postby cheerleader » Sun Jul 22, 2012 3:32 pm

LOVE watching you run up those steps!!! Congrats, Tilt. No survivor guilt for you, just increased compassion for others less fortunate and continued healing. We need to figure out why this works better for some than others. That's what we're trying to do at CCSVI Alliance http://www.ccsvi.org My husband most certainly had "MS" at his diagnosis 5 years ago, in that he had multiple lesions separated in space and time. He had 20 lesions, six enhancing, banding in his CSF and numbness, fatigue, difficulty walking, pain, bladder problems, heat intolerence, etc.
Jeff's three years with no MS progression. He mountain bikes better than most guys his age-he's now 49. He can jog with our dog again. He's out weed wacking in 100 deg. heat today. He's already power washed the deck. I just brought him some ice water. He's smiling and sweating and really thankful.

In talking with his wonderful docs at Stanford, we keep coming back to what is maintaining long lasting and open flow--
and that's serious daily cardiovascular exercise and a heart healthy lifestyle. Dr. Dake's noted this in his original patients, like my Jeff, who have maintained flow. Maybe you guys are just lucky, maybe it was your sub-type of MS, maybe it will take decades more research to understand. But that does not negate nor take away from your healing.
continued health to you, tilt!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Nearly 3 months post procedure

Postby 1eye » Mon Jul 23, 2012 9:12 am

I have great hope, something I lacked for more than 20 years. That alone is a huge improvement.
That's a long time. They have shown it takes far less than 20 rat-years to become hopeless (hate to say it, but poor rats!). Glad to hear of your improvement.

Good thing my piano is indoors, because outside it would be too hot. That reminds me :smile: of a story John Hartford used to tell.

"John I sure wish we had the piano with us," his wife said, one day.

"Oh, why's that?" he replied.

She said, "because I left the checkbook on it."

...it's the Hope Effect.
"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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