This Is MS Multiple Sclerosis Community: Knowledge & Support

To Daniel,

I was Prof Dake's first overseas patient and I think the costs involved weren't clear from the outset and so the final bill has yet to emerge but the scans was $8,500.

Getting insurance to pay for it was a no no since my UK cover doesn't extend to US medicine.

Cheereo is right about trying to find a university in Canada to follow-up on Zamboni's work but it is very trying. I keep getting rebuffed here in the UK when contacting doctors to see if they would like to see my scans. Just have to keep knocking on doors. Anything endovascular and cerebral in the title should do.

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Hat's off to you guys for fighting this fight.

An endovascular repair is not hard or new, new to neuro's and even outlandish from their POV, but not at all to vascular doctors. You'll find one ready to go! There has to be another person like Dr Dake somewhere in the UK and Canada...but then again maybe not!!! he's a really great dude.

Good lord think how much money the medical systems could save!

I saw the insurance bill for my copaxone this morning. It appears to cost 2700 dollars---
2700!!!


You tell me why is that ancient drug so gol darned much? Good grief a'mighty, the MRV looks like a bargain compared...

And at a yearly cost for cop of nearly 33,000, and a well known efficacy of possibly reducing the lesion load but no slowing of progression, the darned surgery cost doesn't look too bad either

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I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Cheer is so right
I have posted previously about a neuro friend of mine - he is an international speaker who talks about MS and treatments. He did not know of CCSVI until I emailed him - after numerous emails with research articles, studies, updates on my testing and procedure, he has finally taken notice and is now in contact with his good friend Dr. Bianca Guttman who is doing the 1000 person study in New York. He did not know about the study until I emailed him. This guy is paid by all the big pharmas to speak --- he has started and ran many MS Centers through out the United States -- he is well known. Now he is interested!! This has not been easy. Now he emails me to send him more research - I am thinking he may try to finagle an invite to Zamboni's September symposium.

My next target is the Rocky Mtn MS Center - maybe I will talk Chris into helping.

There was a man walking down a beach, he saw in the distance another man occasionally stop, bend over and throw something into the water. As he got closer he realized what it was that he threw: it was one of the many starfish that covered the beach stranded at low tide.

He said to the man "why do you do that, it cannot possibly matter when there are so many?"

The man threw another one out into the waters and said "It matters to that one"....

we won't take no for an answer: "ONE AT A TIME"

_________________
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics

Sharon, I hope you get buy-in at Rocky Mountain. Dr. Timothy Vollmer, who runs it now,was my first MS specialist when he ran the dept at Yale in he late 90's. He had a great reputation. At the time was driven by Copaxone research, and I was told he helped bring it to market. I'd hope he's more focused on a holistic approach now.

Michelle

bestadmom

I am afraid you are correct about Timothy Vollmer - he likes to trial medicines (of course the big pharmas are paying him to do so ). I tried him and Corboy in April - I was stopped cold. And, no, Vollmer is not focused on a holistic approach.

I am going in a different direction - probably will go to the Board of Directors - I am going to leave the good doctors out of the equation for now.

Thanks for the reply, did they give you a ball-park figure of what to expect from the cost of the operation?

I'm slowly gathering all the studies related to CCSVI from TIMS and going to see if I can print out copies at the local library so I can have some 'marketing materials' ready to start doctor recruiting =)

Worst case scenario though, I think I may have to go into debt if it seems like I'll be waiting for 5+ years for the procedure in Canada...

I posted a few months back a timeline of CCSVI research and a Zambonie abstract to help anyone needing at a glance marketing tools. here is the link

http://www.thisisms.com/ftopic-7225-30.html

Thanks for being our ambassador in Canada

PS I chose going into to debt

Daniel,

The kind professor gave me a massive under-estimate of the costs involved and he has subsequently got into considerable trouble, I should imagine, with the finance department. The latest at worst estimate they gave me was $80,000 for the whole thing. However I believe that the Professor has been trying to get this estimate reduced.

Mind you, the $80,000 was only if something went wrong during the procedure, if I recall correctly so that that sum is unlikely to be hit by anyone.

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3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,

Hi Daniel

I just got back from Toronto where I had CCSVI testing using the Doppler. It was the Toronto Medical Imaging Center and you just shouw your health card. You need a requisition from your GP though.

I am from Nova Scotia and last year went to a private MRI/ultrasound clinic for a brain MRI when my GP wouldn't send me for one for possible MS. THe MRI cost $ 795. Hope this helps.

Hi Daniel. I'm glad Annaban posted here about Toronto Centre for Medical Imaging. Check out their website (www.tcfmi.com). They are in downtown Toronto and also have another location in Port Perry.

Annaban had info posted on another website yesterday. I sent that link on to two friends. They were told the waiting list is about one week. They said it will be covered by OHIP with referral from GP. I don't know if you can also get an MRV done there. One of my friends is going to check that out.

I had a Doppler at Barrie Vascular Imaging in Barrie last week. They are phenomenal, but their waiting list is now about a year because of all the publicity they've had recently. They have seen people from as far away as Africa. The folks in Barrie have trained with Dr. Zamboni. They are not strong proponents of MRV for CCSVI.

A problem may be if you go elsewhere for treatment whether that location will accept the results from tests here. Arizona Heart Institute has told me they will only accept tests done there. I have asked Albany if they will accept tests done here, but I haven't heard back yet.

Good Luck.

Hope that helps.