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Hi,

I also tried color doppler and MRV at Lilavati hospital but both my test came out negative. I did not gave them any protocol insead went through a vascular specialist (Dr. Paresh Pai) in Mumbai who subscribed to CCSVI theory. Now, I'm not sure how to go forward.

One option I'm looking at try to get MRV again using Dr. Hacke protocol for Siemens 3T machine and se what happens, I've given the protocol details to NMedical and they are saying they need a xpert from Siemens to setup the machine for it.. so its taking a long time for them to come back.

Sunny

Sunny,
I dont think you really need 3T. Take Prof Haacke's protocol and get the MRV done on 1.5T. Any specialist in MRI would be able to do the test according to the specifications in the protocol.
But if you are really insistent on the 3 T , there's one in NIMHANS, Bangalore.

Btw, though the radiologists say there is nothing abnormal, I see a lot of abnormality in my images(Even a child could see, if she looked). They just don't entertain me any longer, saying that I'm in "denial" of the disease and of Avonex which I refuse to take.

Hi Oryx,

I'll send my scanned MRV and color doppler to you and see if you can make out anyting from it.

Also I thought that 3T is more powerful machine than 1.5 T, and my earlier scan was on 1.5T, therefore I thought it is better to go for 3T since its quite a few are available in Mumbai, only issue is majority of clinic and hospital are interested in doing routine scan and once you give them a document carrying a protocol they do not come forward for it.

Sunny

Sunny,
I think giving them the Protocol is more important than the Tesla of the machine. Try to befriend a radiologist and convince them why it is important to follow the protocol.

Hi everyone,

I have a friend in New Delhi (with MS!) who is going to try the Aga Khan Hospital in Karachi (supposed to be very good) and another state of the art facility in the UAE to get her testing one.

The neurologists she is working with seem far more knowledgable than drs here (in the UK!)

Camilla

oryx wrote:Sunny,
I dont think you really need 3T. Take Prof Haacke's protocol and get the MRV done on 1.5T. Any specialist in MRI would be able to do the test according to the specifications in the protocol.
But if you are really insistent on the 3 T , there's one in NIMHANS, Bangalore.

Btw, though the radiologists say there is nothing abnormal, I see a lot of abnormality in my images(Even a child could see, if she looked). They just don't entertain me any longer, saying that I'm in "denial" of the disease and of Avonex which I refuse to take.

Oryx,

As someone who has gone through this ordeal for last 16 odd years, I understand what you are saying. I have never been near immune suppressants and I will probably will never use them. Part of it might be due to the fact that I don't have major disability as such.
They say you are in denial. I would say they are in denial about CCSVI.
That being the case, no amount of stenosis will convince ...

Anyway, I think help is one the way. I think it will take sometime for Dr's here to start trying out, but they will nevertheless.
Some hospitals will probably do their first surgery in this quarter. And when it comes to topline, bottomline and middleline, I quite a few hospitals will start looking into this more seriously.

BTW, Apollo (Chennai and Blore) and Max healthcare seem to be registering foreign nationals for this procedure. It would be reasonable to assume that they know how to test and diagnose too. Are you planning to reach out to them?

Torcan,

You are going t the Apollo facility in Chennai? It has a great reputation (although not necessarily for CCSVI - I think only Simka has that!).

What does Surgical Tourism Canada charge you? I assume it is a complete package.

I've pretty well given up on any other solution than India.

Jaguar wrote:Torcan,

You are going t the Apollo facility in Chennai? It has a great reputation (although not necessarily for CCSVI - I think only Simka has that!).

What does Surgical Tourism Canada charge you? I assume it is a complete package.

I've pretty well given up on any other solution than India.

www.surgicaltourism.ca

This is the information for the company that is sending me to India. It is expensive to go but it is well worth it to me.

Around $20,000 is the final bill for this.