Is there anything in Illinois or the upper Midwest?

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

Is there anything in Illinois or the upper Midwest?

Postby BooBear » Wed May 05, 2010 9:49 am

I have not had any luck with IRs or vascular surgeons willing to discuss CCSVI testing and treatment (even those that had any inkling what I was talking about).

I am getting frustrated, though I know I am not alone there.

Has anyone come across anything in the Midwest that may prove fruitful? I am more than willing to travel on my own dime, of course.

Thanks for your help! This board is a source of hope and sanity against a disease that has little of either.
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Postby Cece » Wed May 05, 2010 11:18 am

I am in MN and had no luck here. I've heard that from others here too, that MN is particularly conservative when it comes to ccsvi, even at the Mayo Clinic.

There was an IR in Chicago who performed two liberations but now I believe he is going through the IRB process. Not completely sure on that one. I don't have his name.

Best of luck wherever you can find it.
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Postby Donnchadh » Wed May 05, 2010 12:19 pm

Yes, there were two liberation procedures preformed in northern Illinois.
I was the second.

Unfortunately, when it was apparent that my internal jugular veins re-stenosis and needed stents, the hospital has required a IRB.

The IR has submitted a "study" proposal for review. He is hoping to have a positive response in "two months."

Will post when I hear something.

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Re: Is there anything in Illinois or the upper Midwest?

Postby Liber8 » Thu May 06, 2010 7:22 am

BooBear wrote:I have not had any luck with IRs or vascular surgeons willing to discuss CCSVI testing and treatment (even those that had any inkling what I was talking about).

I am getting frustrated, though I know I am not alone there.

Has anyone come across anything in the Midwest that may prove fruitful? I am more than willing to travel on my own dime, of course.

Thanks for your help! This board is a source of hope and sanity against a disease that has little of either.


I did get a Dr in St Paul, MN to do a Transcranial ultrasound. He may be willing to schedule an MRV also if asked. The Transcranial was pretty much the same as Georgetown. So if you can get into GU I would go there. The rad tech he had do it called GU and spoke with them about the procedure. The problem comes into play when they interperet the results. These Drs that have not been trained for CCSVI really have a hard time finding it unless it is very obvious.

If you want more info let me know. But in my opinion it is great to go local but what good is it if they really don't know what they are doing? Not only that but the more times it is missed because of lack of experience it just dilutes the validity of the hypothisis and makes us all just look like we will believe in anything.

Mine was NEG. The tech was very nice,5 years experience and has a personal interest in CCSVI. Her name is Paige. She was very thurough (about two hours). The IR has 40 years exp. and works in a vein clinic. He did not seem real keen on actually performing the treatment if found, but who knows. Not sure if Ins would cover it. If you want more info I can contact him or his tech to see if they are interested in talking to you or if I can give out his contact info.
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Re: Is there anything in Illinois or the upper Midwest?

Postby Cece » Thu May 06, 2010 10:38 am

Liber8 wrote:These Drs that have not been trained for CCSVI really have a hard time finding it unless it is very obvious.

This is part of why I am holding out for Dr. Sclafani...my m.s. is so-called mild and, if Buffalo results are correct that the worse your m.s. is then also the worse your CCSVI, I am concerned that mine might be harder to find. Still it is fantastic to hear of someone in my neck of the woods getting as far as the transcranial ultrasound!! If I may ask, are you thinking of going back for the MRV or are you making other arrangements? I would not put much weight in having gotten a negative on the doppler, like you said it when it's their first time doing it and they aren't convinced of the theory, it's more of a shock when they find it than when they don't, regardless of if ccsvi is present or not. :)
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Re: Is there anything in Illinois or the upper Midwest?

Postby Lyon » Thu May 06, 2010 10:58 am

.
Last edited by Lyon on Mon Nov 21, 2011 4:52 pm, edited 1 time in total.
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Postby BooBear » Thu May 06, 2010 1:02 pm

For the record, I am willing to go anywhere necessary. I wanted to see if there was any luck locally simply for the convenience to work with someone closely.

I am not just thinking of the procedure, but of follow-ups. I think we need data- a lot of it- and I am willing to do whatever it takes to collect that data. That is easier to enable when I am close.

I have registered (like thousands) for the Buffalo trial. I may get to GU as well; I am getting my last two MRI records on Monday for Dr. Sclafani also.

Thanks for the input, everyone!
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Re: Is there anything in Illinois or the upper Midwest?

Postby Liber8 » Thu May 06, 2010 8:30 pm

Cece wrote:
Liber8 wrote:...my m.s. is so-called mild and, if Buffalo results are correct that the worse your m.s. is then also the worse your CCSVI, I am concerned that mine might be harder to find. Still it is fantastic to hear of someone in my neck of the woods getting as far as the transcranial ultrasound!! If I may ask, are you thinking of going back for the MRV or are you making other arrangements? :)


I also am mildly affected, even after 16 years. Dont get me wrong I have my issues and have had a few severe episodes but in comparison to a lot I am mild. And I also believe that the less affected you are the less the stenosis, etc. That is why I will be going to Poland in around 6 months. I guess I feel comfortable with the feedback from people that have visited them. When I visited the DOC here it basically was a surprise. I thought what the hell, if a Dr will see me while I am waiting thats just a bonus. If I happened to be one of the people with obvious stenosis they would find it. If not I at least opened the eyes of a couple more people.

Just to let you know I was not laughed at. They took it very seriously. Maybe this broke the ice so they will look for proper training so that they are not just qualified medical personnel, but medical personnel qualified at testing for ccsvi.
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Postby Liber8 » Thu May 06, 2010 8:35 pm

Lyon,

I am not here to explain myself to anyone. This is the extent of my time I will spend on you.
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Postby JCB » Thu May 06, 2010 8:53 pm

Liber8,

Good luck in Poland, you will have to keep us all posted. Thanks for the call today. I was shot down as soon as the receptionist answered the phone. Not giving up yet though. She said I would need a referral from my Neurologist, and that is not going to happen. Have to try another tactic.
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Postby Liber8 » Thu May 06, 2010 9:36 pm

well, it was worth the try. I go to Gary Birnbaum and so far the response from his office has been negative. I have not hear of any neurologists around here supporting it, but keep tryin'. Maybe show them the Georgetown website, that might help.
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Postby JCB » Fri May 07, 2010 7:46 am

Same Neuro for me, I asked him for a referral to an IR. He wants to wait for the studies. His quote to me "If the studies come back and proove this is helpful to MS Patients I will be the first to give referrals." He said he has seen to many patients hurt by chasing possible dreams, my response, what else do we have?
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Postby Trish317 » Fri May 07, 2010 9:25 am

JCB wrote:Same Neuro for me, I asked him for a referral to an IR. He wants to wait for the studies. His quote to me "If the studies come back and proove this is helpful to MS Patients I will be the first to give referrals." He said he has seen to many patients hurt by chasing possible dreams, my response, what else do we have?


How dare he go into the thoughts and feelings of his patients and try to "protect" them. That's not his job or his place.

I'm sorry but, to me, that's arrogant. He's also saying that he knows more than any other doctor, including an IR.

He also knows that it's going to take a very long time for anything to be 100% proven.
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Postby Gordon » Fri May 07, 2010 9:52 am

Sue the Idiot Neuro... Get it in writing with his signature.

He will look back in shame.
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Postby JCB » Fri May 07, 2010 2:18 pm

I may be in the minority on this forum, but I will stick up for my Neurologist. With all the "miracle cures" that are out there, I can't blame him for not jumping on the band wagon. He didn't support bee sting therapy or having all your fillings removed either. I do believe that he wants me cured, but would like scientific proof (don't we all).

I will continue my search for a willing IR in the mean time. The pressure for speedy trials is on the MS'rs side now. The internet has made it possible for all of us to be better informed. I was diagnosed Type 1 Diabetes in '81. It was a lot of book learning to get up to speed to be an expert in Diabetes, compared to what is available now via the web.
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