Who are the BIG names in CCSVI ?

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

Postby jimmylegs » Sat Mar 13, 2010 2:04 pm

lookin good oz :)
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Postby yk » Sat Mar 13, 2010 8:46 pm

I am new to this site. Please update the list of Doctor's who is doing the testing and treatment in Canada or USA. I am in Toronto and as per my knowledge MS society is not doing anything or taking any leadership role. We are left to the mercy of other countries to do the reserch. Thank you
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Postby Dovechick » Sun Mar 14, 2010 10:15 am

Hi YK, if you look on this site it has a list of all the centres we know of in the world.
You are not alone in not being able to find someone to do this in your country. We in the UK are in the same boat. My MP said what is the problem? this is not rocket science... but the Neuros don't like it and the doc and surgeons don't want to take the chance of putting themselves in the firing line.
http://liberation-treatment.com/liberat ... nt/doctors
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby lodgernz » Mon Mar 15, 2010 4:35 am

Folks, heard from Dr George Koulouris of Melbourne Radiology (where Dr Julie Gregg is) that they now have the software to do MRV to the Zamboni protocol. They of course have been doing Doppler to the Z protocol for some time now.
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CCSVI

Postby Rehansayeed » Tue Mar 16, 2010 1:27 am

Hi folks,

i thought that it would be a good idea for a doctor to actually get on this forum and get afeel for what the patients are looking for and what are their worries.

i do perform the liberation procedure myself and am happy to share my thoughts with you.

firstly it took a great mind like Dr. Zamboni to think of the association of the CCSVi in patients with MS. what we ahve found as doctors in our research is that this is more common in patients with MS and we feel that relief of this stenosis may improve the circulation and help relieve the symtoms for a while. our thoughts were confirmed by the series of patients that Dr. Zamboni did and made this a truely liberation therapy.

currently there are only a few of us who perform this and there are plenty of doctors who dont beleive in it but isnt that how most new discoveries are made amidst a atmosphere of ridicule and disapproval , i believe only time will tell us how long the pateints will be in remissions and what is the long term outcome it is too early to condemn the therapy.

regards the use of stents versus just plain balloon angioplasty. as a surgeon i am not averse to the use of stents provided they are used prudently and with absolute indications. just to give you and idea what i mean. the risk of death with balloon angioplasty is less than 1-2% while the risk of death with stents is about 1-2% and may go upto 5% reasons being they need to be anticoagulated as they are in a low flow system and also there is chance of stent migration. In the IJV position this means migrating into the heart and this is fatal. in the azygos system it may be fine to use them as migration is extremely rare. now what if we dont use them then the chance of recurrence is about 40% in 18 months and the risk of a repeat procedure is very low. so it may sometimes be prudent to go that route and low the risk of mortality.

just a few thoughts and hope they spark a healthy question answer session.

regards

rehan
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Postby sbr487 » Tue Mar 16, 2010 8:25 am

** I posted this in the other thread. Not sure if Dr. Rehan woulbe be seeing that. So posting back here **

Hello Dr. Rehan,

Are you Dr. Rehan who is associated with Apollo Hospitals?

I really had few questions and I think this is of interest to many here.

Do you do MRV/US/venography on patients or you rely on the scans done by them (either in their country or locally)?

If you do not do scan yourself, do you recommend a place where (for patients in India) where this should be done?

Are you in touch with the Dr. Z or others who have done pioneering work since this is a new area and looks like lot of Dr's and keeping in touch since they cannot do all the research on their own?

Btw, thanks a lot for your thoughts and welcome to TIMS.

Apart from open minded Dr's like you, lot of people here are responsible for making CCSVI somewhat acceptable.
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Postby Rehansayeed » Tue Mar 16, 2010 10:48 pm

Hi,

i am the same doctor rehan from apollo hospitals bangalore performing the liberation therapy.

yes we do the MR venograms and dopplers here in apollo bangalore and are comfortable with doing them. i do correspond with the Dr. Simka and am yet to meet or chat with Dr. Zamboni. we have been doing venous angioplasties for other indications and as such the procedure is fairly low risk.

i am happy to be able to take your queries and that was the intention. i would appreciate if all can communicate with me on rehan.motherhood@gmail.com or rehan@heartcareforyou.in

thanks

rehan


sbr487 wrote:** I posted this in the other thread. Not sure if Dr. Rehan woulbe be seeing that. So posting back here **

Hello Dr. Rehan,

Are you Dr. Rehan who is associated with Apollo Hospitals?

I really had few questions and I think this is of interest to many here.

Do you do MRV/US/venography on patients or you rely on the scans done by them (either in their country or locally)?

If you do not do scan yourself, do you recommend a place where (for patients in India) where this should be done?

Are you in touch with the Dr. Z or others who have done pioneering work since this is a new area and looks like lot of Dr's and keeping in touch since they cannot do all the research on their own?

Btw, thanks a lot for your thoughts and welcome to TIMS.

Apart from open minded Dr's like you, lot of people here are responsible for making CCSVI somewhat acceptable.
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Postby jimmylegs » Wed Mar 17, 2010 4:14 am

welcome to TIMS, dr., thank you for sharing your perspective.

just wanted to clarify something
the risk of death with balloon angioplasty is less than 1-2% while the risk of death with stents is about 1-2% and may go upto 5% reasons being they need to be anticoagulated as they are in a low flow system and also there is chance of stent migration. In the IJV position this means migrating into the heart and this is fatal.
radeck, a member here at TIMS, survived stent migration to the heart. r has not posted since late january but as far as i know (which is only as much as any TIMS reader could know), is doing as well as can be expected.
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Who are the BIG names in CCSVI

Postby grammastang » Wed Mar 24, 2010 2:03 pm

Dr. Jacek Kostecki in Poland. Apparently a protege of Dr. Simka. Any thoughts?
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Re: Who are the BIG names in CCSVI

Postby ErikaSlovakia » Thu Mar 25, 2010 2:25 am

grammastang wrote:Dr. Jacek Kostecki in Poland. Apparently a protege of Dr. Simka. Any thoughts?

Dr. Jacek Kostecki was doing my first Doppler in hospital in Tychy, Poland in August 2009 together with Dr. Simka.
I just can tell you he knows how to do Doppler for CCSVI and he knows how to find a problem.
He is nice and young. I think he loves this job just as Dr. Simka and they are both very interested in this. I do not know if he also does the procedure or there is another team.
I stayed in hotel Arena - nice and new, close to the hospital. Tychy is close to Katowice.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby sbr487 » Sat Mar 27, 2010 10:47 pm

Dr. Khuram Shafiq Khan from Lahore, Pakistan.
Dr is an IR
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Postby gabbycats » Tue May 04, 2010 7:02 am

Posting the names and hospitals of doctors is what is getting in the way of our patient-doctor privacy! Stop it.
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Postby Lifegirl » Tue May 04, 2010 7:30 am

jenf wrote:Dr. Manish Mehta, Vascular Surgeon, Albany Medical Center, Albany, NY;
Dr. Gary Siskin, Interventional Radiologist, Community Care Physicians, Latham, NY

Mehta is gearing up for a clinical trial; Siskin is diagnosing/treating at this time.


Please don't use doctor's name in a public forum. We are not wanting doctors to be stopped from treating this at the moment while we wait for board approvals. It's something we are asking as a whole and it's not just me. Please be careful on what you post on the interenet. I have a lawyer poking around my fb asking me questions. Please don't take offense and I am not trying to be mean, but this is NOT okay. Thanks.
<strong><u>Tina Veach<br /></u></strong>
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Postby Rainbolt » Tue May 04, 2010 8:33 am

jenf wrote:Dr. _____ _____...;
Dr. ______ _______...

_____ is gearing up for a clinical trial; ______ is diagnosing/treating at this time.


If I don't get treated because this info is out here jen... you can explain to my family why you felt it was alright to put his name on a public forum instead of sharing PRIVATELY!
Last edited by Rainbolt on Tue May 04, 2010 9:22 am, edited 1 time in total.
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Postby lavmac56 » Tue May 04, 2010 8:50 am

Don't we have enough roadblocks with out you causing more? Confidentiality PLEASE
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