Island Girl

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

Island Girl

Postby MrSuccess » Fri Jul 01, 2011 11:08 pm

anyone know what has happened to Island Girl ? Last thing I remember she was thinking of coming stateside for CCSVI treatment .

And what about Marie Rhodes ?

Two great TIMS posters .


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Postby cheerleader » Sat Jul 02, 2011 11:33 am

Hi Mr. Success---

Not sure on Island Girl.
Marie Rhodes is an active writer on the CCSVI in MS Facebook page, and has a new book out, written for medical publisher McFarland Medical publishers. It's available on Amazon as a book or Kindle edition.
Here's some info:
http://www.ccsvibook.com/
It's quite an accomplishment. Forward by Dr. E. Mark Haacke, lots of good reviews. Highly recommended.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrSuccess » Sun Jul 03, 2011 9:52 pm

thanks Cheerleader ..... I sort of knew of Marie's situation ..... too bad she does not post here on TIMS anymore ...... always enjoyed her ability to explain and simplify complex medical terms .....

But still glad to read she is still involved with the CCSVI movement.

Movement ? Can't think of a better discription at the moment ........ :roll:

As for IG ....... seems she was really between a rock and a hard place ..... and a vast body of water. IG always was kind and respectful in her many posts ......... and then ......... dead silence.

That's a concern .



Mr.Success


obtw ..... you are still OFF my Xmas card exchange list .... :wink:
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Postby civickiller » Sun Jul 03, 2011 10:52 pm

im assuming island girl is from hawaii. if she was too bad i didnt sign up earlier, maybe i couldve met up with her
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Re: Island Girl

Postby NHE » Mon Jul 04, 2011 12:27 am

Island Girl was from the mainland. There was another member from Hawaii seeking CCSVI treatment some time ago. Sorry, the latter member's ID escapes me now.

OK, I did some searching and found a member ID of selkie that was from Hawaii. Perhaps this is the member MrSuccess remembers.

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Postby MrSuccess » Mon Jul 04, 2011 6:39 pm

just dawned on me ...... Island Girl was [ is ] Mary Rhodes friend.

I was thinking of Selkie . Thanks for the correct information NHE.

Where would I be without our razor sharp TIMS members ? :roll:

If you are reading this Selkie ...... give us an update ?


Aloha




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Postby Cece » Mon Jul 04, 2011 9:17 pm

Last I heard, she had decided not to go forward with treatment at this time because of the difficulties with travelling from Hawaii and what if complications occurred. This was last fall when we seemed to be hearing about more complications than we are now.

We need a Hawaiian CCSVI-friendly IR.
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Postby MrSuccess » Mon Jul 04, 2011 10:35 pm

thanks Cece .... what a tough spot to be in .........

let's hope somebody in Hawaii ..... get's on it.



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Postby civickiller » Mon Jul 04, 2011 10:42 pm

i was talking with an IR in hilo town who seemed interested but i have since moved and the ms peer support group in hilo has no interest in ccsvi because one of hawaiis ms neurologist told a story about one person a year ago where the surgery didnt work for them and no other stories so they wont talk to the IR i was talking to. that person had the procedure in mexico if that matters

but as soon as my atlas holds for 6 month, i will be getting the procedure so i can hopefully spread the success story
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