Calling to look for treatment at home

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

Calling to look for treatment at home

Postby frodo » Sat Mar 20, 2010 2:54 am

I have written this in other thread, but I would like to make a call to everybody here. I hope all of you will agree.

At this moment there are several centers that can perform diagnosis and/or surgery, but it seems that diagnosis is more difficult than surgery and there are not too much centers that can perform it.

I want to ask you all to look for treatment at home after diagnosis (which is what I am doing), If we try all of us to use the same centers they will get blocked as Poland.

To be treated by a local IR has several advantages

- you will be at home sooner
- you will not have to travel for a follow-up (surgery needs revisions)
- you waiting queue for treatment will be non-existant
- your insurance will pay part of the surgery
- you will spread the word about CCSVI in your home town
- you will help to keep the diagnosis centers free.

Good luck everybody.
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Postby eric593 » Sat Mar 20, 2010 3:18 am

But it's really better isn't it to have diagnostics and treatment occur at the same place? I mean, I think Dr. S said that it's better just to have treatment performed if they're "in" already rather than have to go through diagnostics twice. I think he wrote that he thinks everyone should just be having venograms as part of the initial assessment anyway because the # of people having stenoses is just so high that you might as well just go for the "gold standard" right away and follow it up with treatment at the same time. This way, you'll avoid any problems with false-negatives, etc. that are happening with other tests.

But I very much agree that we need to start identifying more interventional radiologists willing to get on board and become familiar with the protocol and treatments.
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Postby frodo » Sat Mar 20, 2010 11:37 am

eric593 wrote:But it's really better isn't it to have diagnostics and treatment occur at the same place? I mean, I think Dr. S said that it's better just to have treatment performed if they're "in" already rather than have to go through diagnostics twice. I think he wrote that he thinks everyone should just be having venograms as part of the initial assessment anyway because the # of people having stenoses is just so high that you might as well just go for the "gold standard" right away and follow it up with treatment at the same time. This way, you'll avoid any problems with false-negatives, etc. that are happening with other tests.

But I very much agree that we need to start identifying more interventional radiologists willing to get on board and become familiar with the protocol and treatments.


Well, I didn't know that. Anyway in my case, it compensates to look for at home.
Thanks
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Postby dunkempt » Sat Mar 20, 2010 12:51 pm

I am all for local-local-local!

But we should try to keep it in perspective. Local if you live near Chicago or Los Angeles or London or Paris - or is a lot different than local if you live in the middle of the Canadian prairies.

We don't have a lot of people; we don't have a lot of research centres. One of the reasons I got in contact with Dr Simka in the first place was that it would have been cheaper - at the time; I haven't bothered doing the match since - for me to fly to Poland and see him than to get out to False Creek on the West Coast.

There aren't so many doors to knock on out here (we've been trying!) and the doctors behind them tend to be more conservative.

-d
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread
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Postby Donnchadh » Sat Mar 20, 2010 2:31 pm

I would strongly suggest that you start by googling "interventional radiologist" in your state. Then start calling and asking if they have heard about CCSVI. It might take 100 tries before you find someone, but it's worth it. That's what I did after I realized that neurologist's are NOT qualified to do that kind of procedure.

I will always owe this site a huge debt because this where I found the CCSVI protocol's for MRI and color echo Doppler ultrasound.

I was lucky and found someone with an inquisitive mind, and with extensive IR experience who realized he already had the expertise to perform this type of work. He just never dealt with MS before.

I, only half-jokingly, refer to myself as "lab rat No. 2" when we talk.

Time to get proactive people. Each day, per Dr. Zamboni's theory, we are depositing iron in our nervous system, initiating the MS response.

Get liberated!

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Go Local

Postby bmk1234 » Wed May 05, 2010 5:35 pm

I have just finished a letter and printed off 121 labels to mail to Local IR's and Vascular Surgeons in MINNESOTA. We'll see how many responses I get. I don't have high expectations. But I've been surprised before.

Does anyone know of any Dr's in Minnesota doing the Liberation Procedure?
Please PM me if you do.
thanks
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Postby SandyK » Wed May 05, 2010 10:54 pm

Going local sounds great, but going abroad is cheaper than doing it in the states. I won't get health insurance until July 2011 with Medicare and who knows what Obama will have done to it by then. I do talk to people who I think would be interested only to be shooed like an annoying gnat.
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Postby Billmeik » Thu May 06, 2010 7:10 am

got close to going local but false creek got shut down, now im going to Poland.
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Postby tzootsi » Thu May 06, 2010 8:26 am

If you live in the US, and you have health insurance, the best plan of action is to locate medical centers within driving distance, and get on the phone. Speak to the IR's directly if possible. This is how we found an IR that did the procedure on my wife. I suspect the community of interventional radiologists is a fairly small one, and the word is getting around. Many ir's know Sclafani or Dake.
Not to get too political, but I don't think the upcoming healthcare changes will have any effect on how this is covered - if you have a venous blockage, you should be covered.
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Re: Go Local

Postby bmk1234 » Mon May 10, 2010 6:12 pm

bmk1234 wrote:I have just finished a letter and printed off 121 labels to mail to Local IR's and Vascular Surgeons in MINNESOTA. We'll see how many responses I get. I don't have high expectations. But I've been surprised before.

Does anyone know of any Dr's in Minnesota doing the Liberation Procedure?
Please PM me if you do.
thanks


I mailed the 121 letters on Friday. Today I got two responses. One phone call from a Dr. from a very respected hospital. He said they are aware of CCCVI, Have read the papers on it, have discussed it at internal meetings. They do not plan on doing any treatment until more studies are published. He did say at that point they will be happy to treat MS patients. They are not planning any studies.

I also got one email response from a well respected institution. This Dr. stated "At present we have developed a taskforce that includes neurointerventional radiology, several neurologists at the xxxxx xxxxxxx, the non-invasive vascular ultrasound laboratory and myself to create a diagnostic protocol in order to see if we can identify CCSVI in patients with Multiple Sclerosis. We are hopeful that this protocol will be in place soon (currently planned to be available in the next few months) and that we will be able to begin enrolling patients. Our biggest sticking point may be trying to find funding for the research but we are aggressively applying for aid in this arena."

Although neither is treating at this time, I believe this is good news. As I hear more from others I sent letters to in MINNESOTA, I'll keep you informed.

I set my expectations low in that I wouldn't hear from anyone, so to hear from two Dr's on day one with "good" news is encouraging.
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Postby Cece » Mon May 10, 2010 8:26 pm

Blaine, that is fantastic!! I think even in the last few months CCSVI has kept on gaining traction. And what the doctor said about waiting for more published studies...makes me think, hurry up IRBs, let's get these studies rolling!
"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 bmk1234 » Tue May 11, 2010 7:50 am

Cece wrote:Blaine, that is fantastic!! I think even in the last few months CCSVI has kept on gaining traction. And what the doctor said about waiting for more published studies...makes me think, hurry up IRBs, let's get these studies rolling!


I agree Cece, I hope some other folks in OTHER STATES will make contacts, send letters etc, to show the interest and "push" them along.
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Postby coin » Tue May 11, 2010 9:38 am

that is really cool and congrats...it is very encouraging to hear that...good luck and best
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Postby Cece » Tue May 11, 2010 10:57 am

bmk1234 wrote:I agree Cece, I hope some other folks in OTHER STATES will make contacts, send letters etc, to show the interest and "push" them along.

I think it's also cool to remember the several of the studies that we know about (Mehta, Dake, & Sclafani) all started with one person with MS contacting and getting seen and getting treated by them.
"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 walcat » Tue May 11, 2010 5:24 pm

bmk1234, that's awesome! I have been sending out information in my area, every one I've contacted has never heard of CCSVI. I had one IR very interested, but decided today that he will wait for more studies :( I think I will try the mass email might help speed things up.
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