Boston Medical Center- CCSVI study announced

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

Boston Medical Center- CCSVI study announced

Postby cheerleader » Sat Apr 03, 2010 8:27 am

At Boston Medical Center-

Drs. Kim and Kabutey are leading new studies on Chronic Cerebrospinal Venous Insufficiency (CCSVI), a new treatment for multiple sclerosis (MS). Initial research has shown an improvement on MS symptoms.


http://bostonccsvi.com/handler.cfm?even ... cpid=26326

--these docs went to the Hamilton conference, where arcee met them. She reports that Putnam's original work on MS was at Boston City Hospital, which is now Boston Medical Center. A poetic touch-
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Sat Apr 03, 2010 9:01 am

Wonderful news, cheer. I have sent this news to all my academic contacts and my neurologist.

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Boston Studies..........

Postby rettahb » Sat Apr 03, 2010 9:31 am

Are they taking patient volunteers?
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BOSTON THE BIRTHPLACE OF FREEDOM IN THE USA AND SOON "C

Postby bossman » Sat Apr 03, 2010 6:44 pm

Hello to all, I contacted Boston Medical Center about 2 and a half weeks ago. I just received a call from them this past week. They sounded very encouraged about the progress being made in regards to CCSVI. I was told they plan on doing testing as well as treatment in the next 2 to 3 months. Boston Medical Center is a WORLD CLASS hospital. Ironically my father had a quadruple bypass operation at this hospital 7 years ago and at age 75 is doing fantastic,THANK GOD. It was only a matter of time that a leading hospital on the east coast would get involved with CCSVI. I live just outside Boston so as things develop, I would be glad to assist people in any way that I can in anyway that I can. GOD BLESS AND HAPPY EASTER!!! BOSSMAN
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Postby newfie-girl » Sat Apr 03, 2010 7:06 pm

Thank you Bossman, that is very kind of you. I am getting really excited now, things are really looking good for us, finally. :D
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Postby newfie-girl » Sat Apr 03, 2010 7:08 pm

Oh I forgot, HAPPY EASTER TO YOU AND YOUR FAMILY.
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Postby bossman » Sat Apr 03, 2010 7:18 pm

OH I FORGOT, GO RED SOX!!!
BOSTON the Birthplace of LIBERTY IN AMERICA
and soon LIBERTY for MS patients. GOD BLESS AMERICA

GO RED SOX!!
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Postby Donnchadh » Sun Apr 04, 2010 9:06 am

This could be a significant breakthrough-when a prestigious medical institution picks up CCSVI research and treatment, it then becomes medically and scientifically "acceptable" and no longer just a crackpot theory.

The next step would be for other medical colleges to rush in and catch up so as to "be in the forefront" of advances.

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Postby cheerleader » Sat Apr 10, 2010 11:16 am

News from the wife of an MS patient going to Boston Medical Center-
posted on Facebook-
http://www.facebook.com/pages/CCSVI-in- ... 0796282297

The Boston Medical Center Dept of Radiology has enrolled at least 65 patients for their trial. Sixty five patients contacted them last week! BMC distributed instructions regarding referrals from your GP for testing. We visited with my husband's GP yesterday, and the doctor's response was awesome. The GP watched Dr. Dake's 15 minute presentation to the Society of IR on YouTube, and then he called the local radiologist. We now have scripts for 3 tests. Our GP was super psyched. He said, "I never knew the lesions were veno-centric." There's one doctor who supports his patients and would like nothing better than to see his patients improve.


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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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testing ay BMC

Postby belsadie » Sat Apr 10, 2010 1:35 pm

I, too, have communicated with BMC. The service coordinator, Diane and Dr. Kim, himself. have replied. They need a recent H&P, labs and any pertinent info/testing . Not MRI's, just now. They also asked to check with your insurance about whether they will cover MRV of neck and the chest with contrast and duplex Doppler. Try bostonvascular.com for further info. They, too, are waiting for IRB approval. Check it out......
GOOD LUCK to all of us! :D :!: [/b]
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Postby tazbo » Tue Apr 13, 2010 5:13 pm

http://bostonccsvi.com/handler.cfm?even ... cpid=26326

Unbelievable! Somebody found a way to crush this. I was on the list...shocked!
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I just went to their site..????

Postby Hope66 » Tue Apr 13, 2010 5:30 pm

And this is what I found...

"The information on Chronic Cerebrospinal Venous Insufficiency (CCSVI) studies was placed here in error and has been removed. There are no proposed or ongoing studies on Chronic Cerebrospinal Venous Insufficiency (CCSVI) at Boston Medical Center. We are sorry for any inconvenience. "

a disappointed Hope,
be well all
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Postby Katie41 » Tue Apr 13, 2010 5:46 pm

inconvenience......I'm so so sorry
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???

Postby Hope66 » Tue Apr 13, 2010 6:00 pm

Does anyone know what's going on in Boston?

It seems like there has been a serious change of direction here.

be well all,
Hope

PS Cheer...please keep up all your most appreciated work for CCSVI, you've been instrumental in getting us this far. God bless.
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Postby dlb » Tue Apr 13, 2010 9:54 pm

I had been in communication with BMC as well, pretty much the same story as belsadie's and then I had a couple of more technical questions that Diane could not answer so she forwarded them to Dr. Kim. This was all going on a week ago. Then on Thursday, I ignored a call, thinking it was a telemarketer or something, on my home phone (which does not have a message center). Caller ID said: "California" and a phone number??? Then from exactly the same number, I got a phone call on my cell and I missed that call as my cell was on a different floor than I was. The message on my cell was very hard to understand and about all I got out f it was that it was a Dr.-------- (couldn't make out the name) from "Boston Medical Center" and something about a CCSVI study, and an attempt would be made to reach me again the next day. I have not missed another call & haven't rec'd another call or email. It seemed very strange to me that the calls from a supposed BMC person came from a number from California???? Anyone else with that story?
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