Sunday, July 25, 2010

........And so begins another adventure!

This time, we're not heading west young man, we're heading further east! Bulgaria. Sofia, to be exact. We're heading to Europe, Baby!......Sounds exciting, huh? Well, it ain't what ya think but it's all good. Kevin is scheduled for testing and **fingers crossed**, hopefully, treatment for CCSVI, at a wonderful hospital there. Not sure if he'll feel much like "touring" even if there is time. Time will tell.

CCSVI. What is it? "Chronic cerebrospinal venous insufficiency... it’s a chronic (ongoing) problem where blood from the brain and spine has trouble getting back to the heart. It’s caused by stenosis (a narrowing) in the veins that drain the spine and brain. Blood takes longer to get back to the heart, and it can reflux back into the brain and spine or cause edema and leakage of red blood cells and fluids into the delicate tissue of the brain and spine. Blood that stays in the brain too long, creates “slowed perfusion”...a delay in deoxyginated blood leaving the head. This can cause a lack of oxygen (hypoxia) in the brain. Plasma and iron from blood deposited in the brain tissue are also very damaging. " ( this if taken from http://csvi-ms.net/en)

I have been working on getting Kevin tested for CCSVI since last November. Ironically, it was before the floodgates were opened by W5. I wrote to Dr. Zamboni, including every address I could find at his hospital, to no avail. Kevin was added to the list of possible patients for the Buffalo trial in November....no further contact. Dr. MacDonald in Ontario was no longer taking patients. Nothing in the US either.....Jeez.

While reading a blog entry on this subject, I came across someone scheduled for Bulgaria and got Kevin added to the waiting list. It was just days before they sent the forms and then 24 hours later, we had a date of July 29th. We can see that day now :-) . We did go see our family doc who tried to get us testing done in Halifax, NS and Montreal but they were no longer able to do the tests on MS patients. Figures. Next option, please.

Bulgaria.

We didn't enter into this decision lightly. In late 2008, Kevin and I spent 5 weeks in China for umbilical cord stem cell treatment. It was an incredible experience! The change in Kevin was staggering. To see him mobile, not napping, brought back earlier memories of better times. The effects of that treatment lasted a year. Many see Kevin today and comment how China didn't work. China worked. Stem cells are the way to go WHEN the MS has been stopped. We didn't go there looking for a cure, we went to get Kevin some quality of life back.....and we did. We were just hoping for more time. This past year has been very difficult for him. He is pretty much confined to a wheelchair and horizontal when not. The boys at Rod's garage have kept him going but the last couple of weeks, with the heat, have seen him in bed most of the time. 'nuff said.
Fingers and toes crossed that he'll soon be back driving his '55 chevy.

We have been on the waiting list since early May. Everything I have read or heard about this treatment and the care at this hospital, has been extraordinary. Can't wait.

2 comments:

  1. Hey!

    Hope all is going well. I know I don't call often, but you still mean alot to me! and Daniel.
    I hope this treatment works, it would be nice to see you both smiling again, and come into easier times. Love you bunches,

    Your prodical daughter,

    Erica xoxoxo

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  2. Glad to hear op over and kevin is doing fine.Had fingers crossed that MS was vascular and so therefore treatable.See you at home,have safe trip back.
    Thank God for people like my wonderful sister,Tracy, who tirelessly searched and hoped for this day.
    Peter

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