A GREAT IR needs our help!

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

A GREAT IR needs our help!

Postby lucky125 » Sat Jul 31, 2010 6:32 am

A fantastic IR who has been treating CCSVI in his university-affiliated hospital is about to be shut down. There has been a change in leadership in his department, and the new guy sees other hospitals shutting this procedure down. He figures this must be the right thing to do, since he is hearing about more hospitals that are stopping, as opposed to starting/continuing this procedure.

The doctor asked me if I could leverage this community to help him make his case. He would like to submit to his new boss the names of other IRs doing this procedure in big hospitals, ideally university based, around the country.

The IR community is a very tight-knit one. It is amazing how they all know one another. He will contact the doctors whose names I am able to give him. He can take this info to his boss and give him examples of how NOT controversial this really is.

I realize that many of these doctors are working quietly, not making waves. Therefore, I am asking anyone who can help to privately send me the doctor's name and hospital affiliation. PLEASE DO NOT POST THESE NAMES PUBLICLY.

I will pass them along to my doctor. He would love to be armed with the information on Monday, or he may have to start cancelling patients within a week.

This is not a fishing expedition for myself. I was just treated by this doctor, so I am not in need of names for myself. I will also not share this information with anyone but the doctor. You have my word on that.

As a community we can make a difference for this doctor, and for all of the patients on his waiting list who are at risk of being cancelled.

Thank you in advance for your help!
Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
User avatar
lucky125
Family Elder
 
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA

Advertisement

Postby PCakes » Sat Jul 31, 2010 6:56 am

Good morning Lucky..

The doctor asked me if I could leverage this community to help him make his case. He would like to submit to his new boss the names of other IRs doing this procedure in big hospitals, ideally university based, around the country.


Bit dicey.. you might want to ask for Dr Sclafani's or Cheerleader's opinion on this.

Good luck!
p.s. how did the procedure go for you?
User avatar
PCakes
Family Elder
 
Posts: 849
Joined: Sun Dec 13, 2009 4:00 pm
Location: Canada

Postby lucky125 » Sat Jul 31, 2010 7:20 am

I just want to clarify that it is not Georgetown that I am referring to. They are going to be one of the examples that he uses in his defense.

Pcakes, thanks for asking about me. Everything went well. I will report everything soon. Right now I am a woman on a mission!

I am off to contact the big guns right now.

Thanks,
Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
User avatar
lucky125
Family Elder
 
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA

Postby euphoniaa » Sat Jul 31, 2010 8:05 am

Hmmm, okay, I think I've got it. You're asking TiMS members to send you names of all the IRs they know of who are treating patients for CCSVI both publicly and privately/secretly so that the entire list (even names that have been fiercely protected by MS patients) can be turned over to a "good" IR - who will then turn The List over to an "evil" hospital administrator intent on closing down CCSVI Liberation?

Yikes. Not too sure about this one. Uhhh, maybe I actually don't get it at all. :)
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Family Elder
 
Posts: 659
Joined: Sat Jul 15, 2006 3:00 pm
Location: midwest U.S.

Postby lucky125 » Sat Jul 31, 2010 8:19 am

euphoniaa wrote:Hmmm, okay, I think I've got it. You're asking TiMS members to send you names of all the IRs they know of who are treating patients for CCSVI both publicly and privately/secretly so that the entire list (even names that have been fiercely protected by MS patients) can be turned over to a "good" IR - who will then turn The List over to an "evil" hospital administrator intent on closing down CCSVI Liberation?

Yikes. Not too sure about this one. Uhhh, maybe I actually don't get it at all. :)


You make a good point. My concern is that virtually all of the publicity is about hospitals shutting CCSVI treatment down.

Georgetown is still doing it with the support of its administration. Those are the examples that I am looking for.

I hope that helps clarify things.

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
User avatar
lucky125
Family Elder
 
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA

Postby esta » Sat Jul 31, 2010 10:01 am

no help here, but good grief, we inCanada finally have a province on board. would that help? believe me, this is big news, and a very hard struggle that took alot of political manouvering and hard work.
User avatar
esta
Family Elder
 
Posts: 385
Joined: Wed Nov 25, 2009 4:00 pm
Location: Summerland. BC Canada

Postby MS_mama » Sat Jul 31, 2010 10:51 am

I'm sure you can find major names who are doing it openly even--the Vascular Group in Albany (Dr. Mehta), Dr. Siskin and his group, the Arizona group... even if you don't get other names...
dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />
User avatar
MS_mama
Family Elder
 
Posts: 107
Joined: Mon Nov 09, 2009 4:00 pm

Postby Cece » Sat Jul 31, 2010 11:11 am

MS_mama wrote:I'm sure you can find major names who are doing it openly even--the Vascular Group in Albany (Dr. Mehta), Dr. Siskin and his group, the Arizona group... even if you don't get other names...

Those first two are doing the procedure at their clinics rather than the hospital, specifically because their hospitals are not ok with it (until they can get the irb passsed.)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby lucky125 » Sat Jul 31, 2010 12:00 pm

Thank you to everyone who has responded to my request. This really is a most awesome community!

I'll let you know when I get more information.

Thank you again!
Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
User avatar
lucky125
Family Elder
 
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA

Postby Trine » Sat Jul 31, 2010 1:46 pm

Cece wrote:
MS_mama wrote:I'm sure you can find major names who are doing it openly even--the Vascular Group in Albany (Dr. Mehta), Dr. Siskin and his group, the Arizona group... even if you don't get other names...

Those first two are doing the procedure at their clinics rather than the hospital, specifically because their hospitals are not ok with it (until they can get the irb passsed.)




I believe Dr. Siskin's group performs the procedure at the hospital for US residents who have insurance coverage.



.
User avatar
Trine
Family Member
 
Posts: 44
Joined: Fri Apr 23, 2010 3:00 pm

Postby Cece » Sat Jul 31, 2010 1:47 pm

Trine wrote:
Cece wrote:
MS_mama wrote:I'm sure you can find major names who are doing it openly even--the Vascular Group in Albany (Dr. Mehta), Dr. Siskin and his group, the Arizona group... even if you don't get other names...

Those first two are doing the procedure at their clinics rather than the hospital, specifically because their hospitals are not ok with it (until they can get the irb passsed.)




I believe Dr. Siskin's group performs the procedure at the hospital for US residents who have insurance coverage.



.

You are right, I forgot about that.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby bluesky63 » Sun Aug 01, 2010 8:57 am

I have to say that I felt the same way as Euphonia. I wondered if it could in any way backfire, as wonderfuf as the intention is. If someone is doing a procedure privately then they might want to give their permission before their name is given to this excellent effort. So I would personally handle it by notifying those private doctors about this situation, perhaps by passing along this very thread, along with the contact info, and then letting them make the choice to decide if they want their names sent to lucky instead of making that choice for them. :-)
User avatar
bluesky63
Family Elder
 
Posts: 440
Joined: Mon Apr 18, 2005 3:00 pm

Postby lucky125 » Sun Aug 01, 2010 9:26 am

bluesky63 wrote:I have to say that I felt the same way as Euphonia. I wondered if it could in any way backfire, as wonderfuf as the intention is. If someone is doing a procedure privately then they might want to give their permission before their name is given to this excellent effort. So I would personally handle it by notifying those private doctors about this situation, perhaps by passing along this very thread, along with the contact info, and then letting them make the choice to decide if they want their names sent to lucky instead of making that choice for them. :-)


Again, an excellent point. My doc intends to contact these doctors directly before presenting them as evidence. He needs to know exactly what they are doing and under what rules. As a man in jeopardy, I am sure that he is very sensitive to the situations of other doctors.

I was lucky enought to collect about 6 names of university affiliated doctors who are doing this procedure. They are now in his hands. I am confident that he will treat them with great care, just as he treated me with great care on Friday!

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
User avatar
lucky125
Family Elder
 
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA

Postby Cece » Sun Aug 01, 2010 11:54 am

lucky125 wrote:I was lucky enought to collect about 6 names of university affiliated doctors who are doing this procedure.

This is great news. Hope some of these doctors will be able to publish research on their efforts too, since they are university-affiliated.

Please keep us posted on how things go, it would be a great success if this doctor were able to convince the hospital to let him keep treating! I am ready for more 'success' stories and fewer 'shutdown and irb denial' stories.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
Cece
Family Elder
 
Posts: 8956
Joined: Mon Jan 04, 2010 4:00 pm

Postby lucky125 » Wed Aug 11, 2010 9:41 am

HI all,

I don't know any details of the doctor's meeting. I do know that he is performing his last procedure on August 17th. He will then be on hiatus while the IRB reviews his study proposal.

I am told by another patient who spoke to the doctor that the IRB process is supposed to be "expedited," whatever that means.

Thanks to everyone who trusted me with names of doctors. I don't know what role they played in his meeting, but I can imagine that having our community work so quickly on his behalf had to make the doctor feel good. It certainly made me proud to be a member of this fine group!

Let's all hope for a short hiatus, and a quick approval of his study!

Nicole
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com
User avatar
lucky125
Family Elder
 
Posts: 173
Joined: Wed Dec 02, 2009 4:00 pm
Location: USA

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users