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

Postby ndwannabe » Mon Apr 05, 2010 6:41 pm

fogdweller wrote:I have been thinking about this too. Cheer, I think you are right on, but the frustration is that the treatment is generally not locally available. I am local to Stanford, and no treatment is available there anymore. I am not even sure if I can get diagnosis.

I am looking into the cost and what arrangements are necessary to go to Buffalo, where they know how to properly do the diagnosis, but it is going to have to be at my own expense. How much better if it could be locally available!!

I think our efforts, time and money can probably be most effectively spent on getting the diagnosis and treatment widely available and maybe even covered by insurance. I have some ideas on that topic, and plan to start a thread in the near future. In the meantime we need to keep the pressure on to get this diagnosis and treatment locally available.


Hey fogdweller, I am close to Stanford too and am feeling hugely disappointed having learned about the procedure when it was too late for me to take a chance at Stanford.

I am thinking about printing out the testing protocols (I found them being referred to here and on other sites) and going to the nearby vascular specialists asking if they can do the imaging as per those protocols.

Then when I know if and where I have malformation I would be looking for someone to fix it. Again, as per the CCSVI procedure protocols (I have not searched for those yet)
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Postby Liber8 » Mon Apr 05, 2010 7:29 pm

Wow, all of a sudden you all started sounding like my non-believing, I'm gonna scare you out of it Neurologist.

I hope that everyone is grown up enough on here to realize the risks they take before they have the procedure. Also, I have seen how much you all know of the studies and the possibility of restenosis. I realize that you may be trying to make sure people take off their blinders before making a call to have this done but did you read what you typed ? Try to have it done locally ? So that I can wait, get worse, have more permanent damage that can't be reversed ? Let's not forget where this originated. It wasn't local. And the most experienced Dr with it isn't local he's in Poland.

I did my research elsewhere and then I happened upon this site where I got a LOT of very good first hand info from people who have been through it. I also have been reading Sclafanis posts. So I can't thank this site enough. I also applaud your efforts to bring it to the attention of the media and medical community in North America. Thanks for everything you are all doing here.
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Postby ndwannabe » Mon Apr 05, 2010 9:39 pm

Liber8 wrote: but did you read what you typed ? Try to have it done locally ? So that I can wait, get worse, have more permanent damage that can't be reversed ? Let's not forget where this originated. It wasn't local. And the most experienced Dr with it isn't local he's in Poland.



I don't quite understand what you are trying to say here. That there are no qualified vascular specialists outside Poland? That somehow the "local" vascular specialists do not have enough vascular skills?

That doctor Dr. Simka from Poland is more experienced that Dr. Dake from California?

That the local testing can mess things up?

Finally what does it all have to do with a non-believing neurologist?


Please clarify.

By the way, Poland IS local to some people.
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Postby hope410 » Mon Apr 05, 2010 10:03 pm

I don't quite understand what you are trying to say here. That there are no qualified vascular specialists outside Poland? That somehow the "local" vascular specialists do not have enough vascular skills?

That doctor Dr. Simka from Poland is more experienced that Dr. Dake from California?

That the local testing can mess things up?

Finally what does it all have to do with a non-believing neurologist?


Please clarify.

By the way, Poland IS local to some people.


I think Liber8 is saying that for most people, there is no option to go local. Local availability of IR's that will diagnose and treat CCSVI is simply non-existent for most people. To wait for local treatment could potentially = permanent disability.

It's not that we don't WANT to "go local". It's that it is unfortunately not an option for us because local doctors simply will not diagnose or treat. We MUST go internationally if we want it at all, we don't have a choice.
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Postby Johnson » Mon Apr 05, 2010 10:31 pm

Well put, hope410.

I have my Doppler, and MRV from False Creek Surgical that show extreme stenosis, collaterals everywhere, including thyroid, and am embarking on a mission to be treated at home before I go to Poland. I will do what I can, but will go overseas after trying as hard as I can here. I am going down fast lately, after 17 years of variable MS. Next stop for me will be a wheelchair. I'm not waiting for that.

Drs Simka, Ludigya are arguably the most experienced with the interventions, having done over 200. But how many Drs are there in NA doing interventions? Three or four? There are only, at best, 4 centres in Canada screening for CCSVI, and no known doctors doing treatments.

Cripes! I've forgotten what I am writing about.
My name is not really Johnson. MSed up since 1993
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Postby Liber8 » Tue Apr 06, 2010 7:00 am

I'm sorry I didn't say that very clearly. 410 is correct. I would love to have it done locally. I tried through my Neuro and GP and several local IRs. At this time in my area it is a joke to ask. You are looked at like you are a crazy idiot. At times I may resemble that but not when speaking to DRs about ccsvi.

I have had MS for 16 years and to date this is the first time I have seen the science behind the idea that made me realize that for anyone with CCSVI this is real. Even though not the human body, I have been troubleshooting systems on everything from cars to airplanes my whole life and this is so obvious that it really ****** me off when I seen it. It's like they have been trying to figure out the problem with their Ford Pinto while using the trouble shooting manual for a 2010 Lamborgini. If they had kept it simple they would have found it long ago.

I don't know if any of the other Drs in the USA are still performing (currently) except Sclafani and he is now on hold until further notice. BNAC and Vascular Group have not started their studies. I hope those of you that want this done find the resources locally or over seas.
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Postby Vhoenecke » Tue Apr 06, 2010 7:58 am

The Canadian health care system is very good but has faults like they all do. Good:
1) We don't pay for anything.
2) We don't need to buy insurance.
3) We have all specialists.

Bad:
1) We wait for non-emergency procedures (that is getting better)
2) We need referrals to see all specialists(not able to make direct appointments)
3) The doctors listen to a national body. If one says no to treat CCSVI they all do.
4) The way they are looking into the study of the CCSVI theory. Setting it up for failure.

We can't go local, there is no local. It may come sometime in my lifetime but I don't think soon enough to help me. Hopefully if my children get MS it will be available to them. There concern is an overload of the system, for that I am sure. The MS society of Canada is letting labs and doctors know to not allow for testing. I would love to go local.

Val
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Postby esta » Tue Apr 06, 2010 8:06 am

Dearest cheerleader
if it weren't for you, none of us would have the greatest hope of our lives. We are all in awe and always will be incredibly grateful.
We all have choices and we know where you're coming from, in watching out for scammers. This site is fabulous and helps us all imeasurably. Of course we'd all love to do local, but this seems unfathomable at this point. I for one am thrilled to know I can go to Poland. Not 1 ounce of guilt for you young lady, just pride, absolute pride in what you've done for all of us! :D
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Postby Cece » Tue Apr 06, 2010 8:28 am

Off the top of my head I can name some folks who have done this local and done this well: cheerleader, Kacey, bestadmom, and Donnchadh. I think it takes persistance, pursuasion, intelligence and more to do what they did...you have to find the right doc who has a halfway open mind, not come off like a crazy person, etc.

Advantages to going local: no health worries about travel after procedure, access to necessary follow-up afterwards, possibility of repeating procedure after restenosis. Those are big.

Advantages to travelling for care: possibility of more experienced doctors, easier time finding a doctor who will treat, possibly getting this done sooner rather than later. Those are also big.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Liber8 » Tue Apr 06, 2010 12:05 pm

The experience with not only the treatment but also the testing is in Poland. I guess I don't want to wait for a half open minded Dr to say maybe. I have an IR looking at it now. What is his answer is in a week, who knows. But I have to say I would feel a lot better going with experience than convenience. I know not everyone has that option and for those I realy, really hope local options come very soon. I have been telling everyone I know about it in hopes to influence and educate as many as possible. I had a TEE echo the other day and got the IR performing it at least curious enough that she said she was going to look into it. I told her that since they had the Doppler right there I could pay a little extra if they could do a quick look. I got a smile but no scan.

I guess I am just planning for the worst (going to Poland) and hoping for the best (local Drs figure it out).
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Postby ndwannabe » Tue Apr 06, 2010 3:15 pm

hope410 wrote:
I think Liber8 is saying that for most people, there is no option to go local. Local availability of IR's that will diagnose and treat CCSVI is simply non-existent for most people. To wait for local treatment could potentially = permanent disability.

It's not that we don't WANT to "go local". It's that it is unfortunately not an option for us because local doctors simply will not diagnose or treat. We MUST go internationally if we want it at all, we don't have a choice.


I see now! We were actually approaching from the other angle - "If we wait for the big names to finish trials and accept us (namely Stanford, because we both are near it), or to wait in a virtual line" - it would be too late for us!

Glad to realize we are on the same page :)
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