Boston Medical Center- CCSVI study announced

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
User avatar
MrSuccess
Family Elder
Posts: 922
Joined: 9 years ago

Post by MrSuccess » 8 years ago

two ways to interpret this . Theory One - Someone big is running scared and see their career and/or investment portfolio going down the toilet. I support this theory.

Theory Two. BMC still needs to gather more research info and cover their bases legal wise.

Either way - The announcement was exciting to the CCSVI world. :!:


Stay tuned on this one everyone .




Mr. Success

User avatar
whyRwehere
Family Elder
Posts: 917
Joined: 13 years ago
Contact:

Post by whyRwehere » 8 years ago

It does seem strange that a supposedly Famous Medical Hot Spot (all of Boston/ Cambridge) is not acting, and that the Boston Globe refuses to publish any news on CCSVI......could it be that the Cambridge based Pharmaceutical companies have too much influence? Or have Boston doctors just gotten too lazy?
In any case, you can not announce a study one day, and then pretend there never was one the next day. We want some answers!!

User avatar
coin
Family Member
Posts: 63
Joined: 9 years ago
Location: germany
Contact:

Post by coin » 8 years ago

you are very right...and then at least there are studies going on your continent ;-) while here in germany it is more except for Frankfurt the feeling of "Flat line"...but we are working on it....so hopefully one day we can report about some exiting studies being pursued in germany as well....


best
ines

User avatar
tzootsi
Family Elder
Posts: 462
Joined: 9 years ago
Contact:

Post by tzootsi » 8 years ago

whyRwehere wrote:It does seem strange that a supposedly Famous Medical Hot Spot (all of Boston/ Cambridge) is not acting, and that the Boston Globe refuses to publish any news on CCSVI......could it be that the Cambridge based Pharmaceutical companies have too much influence? Or have Boston doctors just gotten too lazy?
In any case, you can not announce a study one day, and then pretend there never was one the next day. We want some answers!!
This whole thing is very bizarre. I have a third theory - perhaps a disgruntled employee or student was able to break into their web page and put the CCSVI info out there. The web page did look a little unusual with all the CCSVI links, etc - not typically what you'd expect from a major medical institution.

User avatar
dlb
Family Elder
Posts: 202
Joined: 9 years ago
Location: Didsbury, Alberta Canada
Contact:

Post by dlb » 8 years ago

Has anyone from the area physically been at the center to drop records or inquire? I still can't understand why the phone calls I got came from a California # (408-460-3251)??? Was this some kind of hoax, does anyone think? When I call the number back, there is an automated message saying it is from a Sprint network, and I could leave a message. Has this number and the message I posted on pg 1 come in to anyone else? Very confusing....

newlywed4ever
Family Elder
Posts: 255
Joined: 10 years ago
Location: Michigan
Contact:

Post by newlywed4ever » 8 years ago

I can't understand any of this either but the hacker theory is out. I talked to Dr. Kim twice - once when they called me and once when I called them.

User avatar
bossman
Getting to Know You...
Posts: 24
Joined: 9 years ago
Location: BOSTON

Post by bossman » 8 years ago

I live 10 miles south of Boston, although I physically haven't dropped off my, medical records to Boston Medical Center, I have been in contact with them numerous times. When I received the annoncenent this morning I called them and the person I have been dealing with was not aware of rhe news on the website. She was "looking " into it and is suppose to call me later today.I will post any developments as soon as I hear from BMC.
BOSTON the Birthplace of LIBERTY IN AMERICA
and soon LIBERTY for MS patients. GOD BLESS AMERICA

GO RED SOX!!

User avatar
dlb
Family Elder
Posts: 202
Joined: 9 years ago
Location: Didsbury, Alberta Canada
Contact:

Post by dlb » 8 years ago

Thank you for the reply bossman! I'm still confused about the odd phone number and message on my cell but your post is definitely reassuring!

User avatar
bossman
Getting to Know You...
Posts: 24
Joined: 9 years ago
Location: BOSTON

Post by bossman » 8 years ago

I just received an update. They said they are sorry for the confusion, they are continuing to wait for IRB approval and at this point the hospital prefers not to have the information on the website until final approval.
They will keep us informed.
BOSTON the Birthplace of LIBERTY IN AMERICA
and soon LIBERTY for MS patients. GOD BLESS AMERICA

GO RED SOX!!

User avatar
ILoveHim
Newbie
Posts: 6
Joined: 8 years ago
Location: Boston, MA USA

Post by ILoveHim » 8 years ago

Totally bummed to read that on their website but I will continue to keep my fingers crossed that there really will be a clinical trial/study here in Boston!

jr5646
Family Elder
Posts: 185
Joined: 9 years ago
Contact:

Post by jr5646 » 8 years ago

dlb wrote:Has anyone from the area physically been at the center to drop records or inquire? I still can't understand why the phone calls I got came from a California # (408-460-3251)??? Was this some kind of hoax, does anyone think? When I call the number back, there is an automated message saying it is from a Sprint network, and I could leave a message. Has this number and the message I posted on pg 1 come in to anyone else? Very confusing....
Out of curiosity I did a reverse search of the above number... nothing... I google searched it.. and found this:

Massachusetts Radiology Vascular & Interventional Radiology Doctors, Physicians, Healthcare and Medical Providers
Kabutey, Dr. Nii-kabu MD (follow link and scrool down to the name)

LINK

Then go here:

http://www.bumc.bu.edu/radiology/facult ... abutey-md/

Nii-Kabu Kabutey, MD Boston University School of Medicine Radiology

Looks like he has a sprint cell phone from the Santa Cruz, CA area???

Hope this helps...

jr5646
Family Elder
Posts: 185
Joined: 9 years ago
Contact:

Post by jr5646 » 8 years ago

I would venture a guess that IRB approval is going to have to take place before we get any treatment ... I was on Dr. Sclafani's list for April 19th before they stopped testing/treating until they get the IRB approval..

Hopefully soon we'll all get our shot... hopefully sooner than later :D

User avatar
dlb
Family Elder
Posts: 202
Joined: 9 years ago
Location: Didsbury, Alberta Canada
Contact:

Post by dlb » 8 years ago

Dear jr5646,

Just goes to prove how much more technically savvy you are than I am! Thank you for that clarification.

Just to let everyone know, I've been sent the same email from BMC: "We will let you know as soon as we get IRB approval." & "We are sorry for the confusion. We are continuing to obtain IRB approval. At this point of time, hospital adminstrators prefer us not to have the information on our website until the final approval.

We will keep you informed in this regard."

Hope that helps.

User avatar
Hope66
Family Member
Posts: 62
Joined: 10 years ago
Location: Southwestern Ontario, Canada
Contact:

thanks all...

Post by Hope66 » 8 years ago

Keep us posted as to any knew developments.

Happy Roads,
Hope
-----------
Dx March 2003
Avonex

Post Reply
  • Similar Topics
    Replies
    Views
    Last post