This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi All,

I guess this question is mostly directly to people from outside the US whose insurance wouldn't cover international treatments... How did (or do you) plan on paying for the testing + procedure? When I called up stanford, they nurse said the MRI would cost roughly $8-12k, and the procedure anywhere from 60-80k, and that is after a 40% discount!

I'd be really interested in hearing if anyone has had success with their insurance covering something like this. The nurse from Stanford said there was one other woman coming in for the procedure from Canada and one from the UK.. I asked her to forward my contact information to them but I'm not sure if they did...

D

Hi Daniel -

You may want to PM Gibbledygook (sp) who just came home from Stanford. She is from the UK Hopefully she can help you

Not sure what country you are coming from. I had an MRV performed, which they mistakenly only scanned my head. However, that scan itself cost me nada; by the research department associated with one of my neuro's. When I called a clinic directly, they informed me that an MRV would cost up to $1000AUD. I would assume now that it was only of my head, but I was very clear with them it was from my diaphragm to the top of my head.

In a few months, Zamboni et. al. will be releasing more information in regards to their treatment, which as far as we can tell, it does not involve stents, and may be documented well enough for local surgeons to perform the work, for more reasonable expenses. I think the funding center is based on this idea.

I'm from Canada and MRI's here are covered under our healthcare system, however appointments usually take 5+months and you need a valid reason for one.. and since all of these procedures are 'experimental' at this point... I think it'd be rather hard to get approval. There's also a lot of talk on these boards regarding getting the MRV/dopplar/etc scans done correctly or they wouldn't be helpful in diagnosing the problem veins.



I hope this information comes out soon, I know we've just been learning more and more about this recently but I'm already super anxious and can't wait lol

BUT this is only 6 MONTHS since Cheer started this thread....

4 Months since Cure had the first doppler...
3 months since mine.

2 months since Jeff had his.......AND his surgery.

In that time we have gone from rudimentary understanding of what this CCSSVI is, thinking it was a simple blockage, easy, straightforward and maybe too "simple to be the cause of MS";

to understanding that it is difficult to find on diagnostics but that people determined to find it and to look carefully can do so, and careful literature review has shown it most certainly IS possible for a blockage to cause lesions in other parts of the body and these lesions do not appear to be substantially different from those.

We have gone from maybe some of us have this to almost all of us seem to have it and the odd person who does not probably did not get well done assessment, because it is easy to miss given today's misunderstanding regarding cerebral circulation ("reflux is normal").

We have gone from I wonder if there will be such a backlash from pharma that it will get squashed to ---speaking of myself personally-- ready to take to the streets and do whatever it takes to get this fully funded and investigated NOW...ON PEOPLE.

THIS IS MOVING WITH LIGHTENING SPEED!!

If in December we had heard of Amazamab---the new monoclonal which would be the end of MS, aside from being skeptical a mab would actually work better than they have done before, we would all understand without anyone having to tell us that it would be many MANY years before we could get it.

The cool thing about this is if it was proven beyond doubt tomorrow, everyone in every country could get treatment because we all have vascular surgeons....they've been doing stuff like this on hearts for a long time. It is not difficult. There is no manufacturing to gear up, no FDA approval to be obtained........

They should be ready and waiting to do this no problem, all they need is a go ahead.

_________________
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

Marie brings a very important reminder...this is moving quickly, thanks to the internet...but medical research is still confined to a more traditional model...Dr. Dake spoke with us at length about this very topic yesterday.

Just because patients see the logic in this diagnosis and treatment DOES NOT mean that the medical establishment will. This is going to take time and a grass roots level and alot of work from all of us. I believe in miracles, but I also know that God wants us to buy a lottery ticket before we ask Him for the jackpot.

Dr. Dake is one human being, and he is getting more assistance from other doctors at Stanford, but we all need to be our own advocates and find doctors in our area of the world. Daniel , I mentioned this to you before...bring this research to docs in Canada. Call them, book a consult, e-mail them, send them the research. Bring it to your GP, your neuro, don't throw up your hands until you've sent it to every doctor in your province.

The more doctors we have reading the research, discussing it with their patients, getting their patients tested, the better. Use the internet. Find local docs that think outside the box. Go to your universities. Is it going to be easy? Heck no. I had a bunch of docs in southern California tell me to my face and in e-mails that I was nuts. Be a squeaky wheel. Unless those with MS and the folks that love them ask for other alternatives to the latest immune ablating therapy...that's what we're gonna get!!!! Not many doctors want to be the one to stick his/her neck out- but there are some out there that are fascinated by this research, truly want to learn and help patients. They exist. Find them!
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer is so right and so much more clear than I was ....that IS the grass roots effort as she describes; going to universities and not taking "no" for an answer, not hauling signs around streets...which was my lame metaphor for this effort.



word.

given enough time the fictitious "Amazamab" will be here....the thought makes me unutterably sad.

marie

_________________
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

OK. I think I'm a little slow today. I finally got it. "Amazamab" should be pronounced "Amaze-amab."

As in... "New from Ronco! The amazing "Amazamab." It targets, it binds, it blocks, it slices, it dices, it does it all. Call now and get it delivered for just a lifetime of yearly installments at this specially advertised low price of only $49,999.98!"



NHE

Yeah! That's the one!! you saw the ad!

_________________
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

Daniel, Dr Dake is actually suggesting that because of the sensitivity of an MRV result with the operator, if others wish to do checks outside of the Stanford team, to get a CT performed. He said these were MUCH less prone to operator inconsistencies. And I would guess they would be cheaper and with much smaller waiting periods.

I had actually originally had a CT scan scheduled based on Dr Dake's advice, but after seeing the catheter in all of the CT's in Zamboni's paper, I chickened out and went with the MRV.

I'm trying to get my husband's doctor to write a script for an MRV of the correct parts of the body (chest/neck) and Dr. Dake is saying to do a CTscan instead. Am I understanding this correctly? Do you use a catheter for a CTscan?

But wait there's more!! Call now and get not 1, but 2! And it of course makes jullienne fries

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http://myhopefuljourneyintoactualmsreco ... ogspot.com

OK the Zamboni papers used venograms with flouroscope for use in the operating room for live, real time pictures. They do that when they are operating on the veins so they can see how is it now ....now? what if I add this, how about now? Obviously a "snapshot in time" of the veins doesn't cut it for that, you can't go out to CT during an operation, so they have the internal catheter for the endovascular whatever and they can put dye in there repeatedly whenever they need to

a CT scan uses iodine dye, same thing, BUT it is a one time picture with and IV of the dye, not an endovascular catheter.

_________________
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

I believe a catheter is used when incontinence is a concern. Taking pictures from whatever machine does not matter because it takes time, hours to complete.

Dr D used the floroscope during the operation as marie said it is live not memorex

"catheter" means a tube to deliver something. The tube they feed up the femoral vein is a "catheter" just like a tube in your bladder is a "catheter"--same word, both tubes, different applications. (though oddly the same type of device and they even are sized in similar language. We had a 7 french catheter for our femoral access to do the endovascular procedure. A typical catheter is also sized in the "french" system)

_________________
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