This Is MS Multiple Sclerosis Community: Knowledge & Support

When CCSVI treatment becomes mainstream. Which i'm pretty confident it will, as with with many others on here. Will there be a priority for who gets treated first?. Such as people who are on the virge of not walking... or losing eye sight. I've seen reports of people already treated with a EDSS of 0.5 - 1.5 and i'm thinking... shouldn't someone else be done first??? I know its just early on and they are trying people in various stages of progression. But I know people that haven't had a attack in 8 years and they are trying to get diagnosed with ccsvi and treated.

Will the dr's diagnosing and the surgeons put people in priority?? Just because someone is the loudest voice and the first to contact doesn't mean their progression is the worst.

I'm a EDSS of 3.5 -4 and i'll gladly sit back and let those in worse shape get treated first.

Hi. My EDSS is 6.5 now. I think it will be available to people who have the coverage and resources. This is year 16 for me but without health insurance I must wait. I have seen lots of cancer patients who have died because they couldn't get treatment and I don't think this treatment will be any different. Not to say I will die from this but I most likely will just continue the downhill slide. If I hear one more time...'sometimes life isn't fair.'

nicko...
I'm not sure how to answer this...it brings up many feelings - especially your loudest voice quip. Let me try. My husband was "only" a 1.5 EDSS, but I brought the research around to many universities, did the leg work and because of this he was able to have a doctor scan him and treat him. Yes, he could have waited. But he chose to be treated, for himself and for the research potential. Someone had to go first in the states. We weren't pushing ahead to get on to the lifeboat....we were building the lifeboat.

When and if this treatment becomes mainstream, there will (hopefully) be enough CCSVI diagnostic/treatment centers available to treat all comers. Your offer to wait is noble...but I would challenge you to instead bring this research to universities and vascular/endovascular/interventional radiologists and see if you can get some more doctors looking into CCSVI. That is the best thing you can do with you energy and health- for yourself, and for other MS patients.
cheer

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

I don't think there will be that much of a wait for anyone with the resources to get treated. There certainly wont be a shortage of stents.....I think the biggest bottleneck would be the imaging and diagnostic equipment necessary along with the training to properly diagnose CCSVI. Definitely don't think there will be a lack of Dr's willing to perform the procedure.

Lots of things to be nervous about still, but I don't think this should get you worried.

-John

Cheer....
As usual, you came up with the exact right thing to say. I particularly loved your phrase, "We weren't pushing ahead to get on to the lifeboat....we were building the lifeboat." And so you were. And you continue to build a whole fleet of lifeboats for us all out here on this rough sea......each of us can help in our own way to corral these lifeboats and together, steer them in the right direction.
Katie41

Oh yeah, they are working on that list already I heard. I found out they are starting with the "J"'s though! LOL

I have a very supportive family Dr. My last visit she brought up the CCSVI stuff she had seen on TV as soon as i sat down and I gave her a few websites to read up on. She believed that in a years time MS will be treated in a radically different way then today. I'm making another appointment here very shortly to see if she will push my circulation issues and neck pains(that just so happen to be exactly where my jugulars are) To see if I can get a scan.

Any advice on how to actually get a specialist to look at me and not to dismiss me because of MS and the unproven issue?

I don't want to stir up any debates here on health care. I just noticed Sandy's post here ealier on not having health insurance. I'm Canadian and while I know our system has flaws, I see it easier to get access to healthcare because of our system here. Not everything is covered so it's not a perfect system either. I don't know the details of what Obama is proposing, but will his proposed system not make it easier for people like Sandy to get help? I know for some money will still talk for sure.
Cheerleader, I just have to commend you guys for the effort you have gone through for yourselves and now for others. WOW! Also I don't know if I'd have the guts to be one of the firsts in these trials just out of fear. You guys took the time to research this and probably not have as much reason to be afraid because you educated yourself and believed in it. You're sending the message that if you really want it, you just have to be proactive. I think you're right. You can't wait for things to fall into yor lap. Congratutations on what you're achieved and thanks from Canada.

the proposed changes to the healthcare system in the US wouldn't go into effect until 2013/14. Yes, these new rules would make it illegal for an insurance company to deny coverage (or charge more for) to those with pre-existing conditions. The plan is far from perfect but better than status quo for sure. Its kind of ridiculous that this 'sweeping' healthcare reform will take 3-4 years to implement while providing no relief for those that need it most in the meantime.

Cheer,

You don't need to defend yourself , I wasn't attacking.. Like I said, its early on. Also this early on with such a experimental procedure. I would think someone generally healthier and lower on the EDSS scale would be a better candidate.

I'm just refering to when this becomes mainstream. It would be nice to see a way of putting people in some sort of priority. One based off of disablility and not how proactive they've been. Lets face it some peole can put up alot of fuss over small things.

I'm in Canada and I can see some horrendous wait times to get the surgery done. Especially here in the mariitimes. I can see lots of people traveling to get this done. I mean if they are progressing rapidly a 1-2 year wait can be a lifetime.

nicko, perhaps putting the cart before the horse, just a bit. Let's get this mainstream, and take it from there.

You might want to do some cost/benefit analyses - work out the cost of disability payments, drugs, assistants, assistance devices, etc., include some ephemeral number for lost productivity, and do some lobbying.

I think that we with MS should be ahead of those who need coronary angioplasty, or quadruple by-passes and such when it comes to access to care. We didn't smoke, and eat, and lounge ourselves into this, after all.

You live in the Maritimes, where housing is "cheap", I'm on the Wet Coast, where real estate is really, really expensive. Perhaps you can better afford to fly to Poland than I, so I should be first?

Excuse me if I am being a bit snippy, but when we start asking who deserves care over others, I see red. I've been f*cked up for 17 years on March 15th, 2010, some have been more f*cked up for 25 years, some for 35 years. We have "lost" more of our lives than someone who has "only" had MS for 1 or two years. Should we be first?

Again, excuse me my rant - I have had a good dose of red wine to block the iron absorption from my spinach - but let's work on getting everybody fixed, by pushing this forward. Donate 25 bucks to the UBC/Saskatoon study (what do you pay for Internet access?) Write letters to doctors, universities that do medical research and training. Get your MP involved, your provincial representative (MLA in BC, MNA in Québec, etc.) And when you are fixed, don't forget about those that don't have universal coverage at all. See what you can do with your new lease on life to help others. The gift is in the giving, after all.

/pyrotechnics

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My name is not really Johnson. MSed up since 1993

Hi nicko,

I don't think that it was wrong at all to bring up this subject at this time. While it is arguable that our main energies should go towards ensuring that CCSVI, its effects and possible treatments are thoroughly investigated, it wouldn't hurt for some people to spend some time thinking about the triage process in some hypothetical (hopefully near) future.

Assuming that CCSVI assessment and some form of liberation treatment become mainstream, then the medical system WILL impose some kind of triage on the procedures (for those situations where money is not the primary criterion). Such triage is certainly used in organ transplants and many other procedures, so it would be very useful to know what criteria are used in those situations and how they may (or may not) apply to the MS situation. While some of the factors that influence place in line (level, rapidity, sustainability of response to treatment of different types of MS) may have to await the results of long term trials to "put hard numbers to them", there is no reason why we can't talk about them.

By discussing this now, the MS community may be abe to influence the factors that are taken into account in the triage process, or at least will have informed itself about the factors that are being employed. If your place in line for treatment is farther back for reasons that are generally rational and transparent, it might be easier to accept.

My own feeling is that decisions concerning where to put resources in the medical system are not often enough based on rationality and transparency. If we can help making the hypothetical future triage system better by discussing it now, why shouldn't we do it?

...Ted

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Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com

Marie brought this subject of "compassionate treatment" up on the boards before Dr. Dake (a vascular doctor) was no longer able to treat a VENOUS DISORDER and the neurologists decided they'd had enough....she saw what was coming.
here's the thread- it was written before many new folks showed up, and is a good one to revisit.

http://www.thisisms.com/ftopict-8473-co ... +treatment

I still say that the only way to move this forward is for every interested party to bring this information to their local university vascular/endovascular/interventional radiology departments. Set up appointments, make phone calls: it worked at UBC in Canada, it's working today on the east coast of the US, it worked in Poland (Marie and I met Dr. Simka online and got him involved, and after the Bologna conference, he was on board.) We can't wait for someone else to do this for us-
talk is great, action is even better.
cheer

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

What we have to consider is that the vascular surgeons are already busy doing what they do now. I'm thinking that unfortyunately we don't have to only consider how CCSVI people should be organized as a priority for treatment. CCSVI will have to be worked into their surgeries already being performed. I'm guessing that some vasvular surgeons will want to specialize in CCSVI but these surgeons don't pop out of nowhere. There's only so many of them to go around.
Johnson, I'm not saying I agree or disagree with your comment that we should be put ahead of people needing angioplasy or bypasses etc. As the MS community we better be careful in saying that just to maintain our image and what we are trying to achive. Just think what it would look like if that type of story was put into the news. The broadcasts so far have been positive in helping us. We don't need the press to be putting us up against those needing bypasses etc because I think the general public will have mixed reviews on that. Don't think I don't share your same expressions of thought though. This is a bastard of a disease we share.
I do agree with you though on the fact that right now our main focus should be on being as proactive as we can to get this concept accepted. As you said, I think I'll check on some local universities and see if we can interest them in this concept of CCSVI. And by all means we should all be trying to contribute to UBC or Saskatoon in which ever way we can. I did get a christmas card from the people in buffalo, because I send in a request to be part of their study before I knew of UBC. With that was a request for a donation. I think I'm going to send something small there. What they are doing there will be helping us Canadians also.
No doubt there is going to be alot to sort out as far as who goes first for treatments. I'm sure research results will help determine what general priority should be followed. We're all wondering how this is going to play out.

It's hard to argue with your statement Cheer. We as individuals need to all do our part to get every possible university, vascular clinic etc on board. I'm going to see what I can do. I've already sent letters to any governing body of government I thought should hear my voice. I think I'll take your advice Cheer.