Help? Tips? Advice?

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

Help? Tips? Advice?

Postby suzq77 » Tue Apr 13, 2010 1:57 pm

Ok, time to rally for help: I am meeting with an Interventional Radiologist tomorrow to talk to him about performing the tests (and possibly the procedure) for CCSVI. They aren't testing here yet so I'm bringing him a 3 ring binder full of information (articles, research data and Dr. Haacke's MRV protocol). Is there anything else I should take or should say during the appointment? They already told me that they're capable of performing the tests but they just need the protocol. I'm cautiously optimistic...

Thanks!
Susie
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Re: Help? Tips? Advice?

Postby Donnchadh » Tue Apr 13, 2010 2:23 pm

suzq77 wrote:Ok, time to rally for help: I am meeting with an Interventional Radiologist tomorrow to talk to him about performing the tests (and possibly the procedure) for CCSVI. They aren't testing here yet so I'm bringing him a 3 ring binder full of information (articles, research data and Dr. Haacke's MRV protocol). Is there anything else I should take or should say during the appointment? They already told me that they're capable of performing the tests but they just need the protocol. I'm cautiously optimistic...

Thanks!
Susie


Do you have the ultrasound prodoctol? Otherwise it sounds like you are ready! I hope more people become proactive like you and approach their IR's...it's the best way to get this procedure known and accepted.

Good Luck! Let us know what happened.

Donnchadh
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Postby tzootsi » Tue Apr 13, 2010 6:35 pm

Meeting with an IR is a very good way to get things done. My wife went thru this the past few weeks, and her IR did the procedure with no hesitation. Realize that IR's do this kind of stuff all the time. Instead of looking at it like a new and unproven treatment for ms, approach it as a venous blockage issue that needs to be corrected. This will allow insurance coverage. If it helps your ms, all the better!
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Postby suzq77 » Tue Apr 13, 2010 8:19 pm

Donnachadh,
I don't have the ultrasound protocol but I do have Zamboni's published study along with a list of doctor's doing the testing and treatment worldwide - some with contact info. So, I hope that will be helpful.

Tzootsi,
Did your wife's IR do just the test or the angio as well? How exciting, either way! I hope good things come from tomorrow. I had some friend's make the trip to Buffalo to Seton for their MRVs and if I can spare myself the travel expenses, I'd be so stoked! Coincidentally, I had my 5 month follow up appointment with my neuro yesterday. He is not supportive of CCSVI (shocker, right?) but I think all of his patients must be wearing him down because he wrote me a script for MRVs of my head, neck and chest with and without contrast! I might actually be getting somewhere...

Wish me luck!
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Postby Nunzio » Tue Apr 13, 2010 10:55 pm

This is the ultrasound protocol; I think was prepared by dr. Simka.http://www.msliberation.ca/MS_Liberation_Group/Testing_files/protocol_doppler.pdf
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Postby suzq77 » Wed Apr 14, 2010 5:42 am

thank you, Nunzio!

I'll let you guys know how my consult went...
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Postby tzootsi » Wed Apr 14, 2010 7:30 am

suzq77 wrote:Donnachadh,
I don't have the ultrasound protocol but I do have Zamboni's published study along with a list of doctor's doing the testing and treatment worldwide - some with contact info. So, I hope that will be helpful.

Tzootsi,
Did your wife's IR do just the test or the angio as well? How exciting, either way! I hope good things come from tomorrow. I had some friend's make the trip to Buffalo to Seton for their MRVs and if I can spare myself the travel expenses, I'd be so stoked! Coincidentally, I had my 5 month follow up appointment with my neuro yesterday. He is not supportive of CCSVI (shocker, right?) but I think all of his patients must be wearing him down because he wrote me a script for MRVs of my head, neck and chest with and without contrast! I might actually be getting somewhere...

Wish me luck!



My wife's IR did a doppler in November, found some turbulence in the left jugular. He did the venography with ballooning this past Friday, and found both jugulars were stenosed.
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Postby suzq77 » Wed Apr 14, 2010 1:53 pm

tzootsi - how is your wife doing? If you don't mind me asking - what were her symptoms before the angio? I use a wheeled walker around the house and outside for short distances and a scooter the rest of the time.

The IR is on board. He was very impressed by all the info I brought him and said it was exactly what he needed. He also plans to contact the other doctors I listed in my "Resources" section (Dake, Haacke, Mehta, Salvatore, etc).

Next step is for me to find out if the tests are covered and if so, how much is covered/what I'll be responsible for. I printed out my carrier's specifics on coverage for MRA/MRVs and I think I'm covered.

If not, the IR is going to speak with Dr. Mehta about possibly piggy-backing on to his study. This will take some time, but I've lived with this disease for almost 9 years- what's a few more months? And even if that doesn't happen, I'm ready to spearhead some local fundraising options.

It's on, baby!
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Postby tzootsi » Wed Apr 14, 2010 2:29 pm

suzq77 wrote:tzootsi - how is your wife doing? If you don't mind me asking - what were her symptoms before the angio? I use a wheeled walker around the house and outside for short distances and a scooter the rest of the time.

The IR is on board. He was very impressed by all the info I brought him and said it was exactly what he needed. He also plans to contact the other doctors I listed in my "Resources" section (Dake, Haacke, Mehta, Salvatore, etc).

Next step is for me to find out if the tests are covered and if so, how much is covered/what I'll be responsible for. I printed out my carrier's specifics on coverage for MRA/MRVs and I think I'm covered.

If not, the IR is going to speak with Dr. Mehta about possibly piggy-backing on to his study. This will take some time, but I've lived with this disease for almost 9 years- what's a few more months? And even if that doesn't happen, I'm ready to spearhead some local fundraising options.

It's on, baby!



Suzq,

You can refer to her tracking sticky, but in brief:
She has a mild case of ms, with her primary symptom being a heavy right leg. She also has balance issues, burning skin, slight spasticity, etc.
I'm going to post an update in a few weeks, but at this point she is doing well, some minor changes already. She does have a fair amount of soreness in her neck from the ballooning, but the procedure went very well.
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Re: Help? Tips? Advice?

Postby daniel » Wed Apr 14, 2010 5:45 pm

suzq77 wrote:... so I'm bringing him a 3 ring binder full of information (articles, research data and Dr. Haacke's MRV protocol).
...
other doctors I listed in my "Resources" section (Dake, Haacke, Mehta, Salvatore, etc).


Do you have a copy of the contents of this binder you'd be willing to share so that others can prepare something similar to bring to their docs?
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Postby suzq77 » Thu Apr 15, 2010 6:08 am

I can't take credit for collecting everything in the binder. I found a website will all of the info on it and I also included an article about Dr. Mehta's findings/study:
http://ccsviworldwidevictory.com/MedicalPersonnel.aspx
http://vaware.org/journal/76-vol-2-issu ... s-dvt.html

I didn't just print it out and pop it in the binder - for example, I re-typed the participating doctors page because it didn't print very clearly. And I took out some of the articles because they seemed redundant, Also I divided it all into four sections: About CCSVI, Research Data, Test Protocols and Resources. The original print out was about 80 pages and I think I had half that in the end.

So that's what I did - but use your judgement and do what works best for you...

P.S. I'd written an email to Dr. Salvatore's general ccsvi email address to inquire about my IR consulting with him. I got an email from Dr. Salvatore personally last night offering his assistance. Never thought I'd get an email from the Chief of Radiology at a hospital rresponding to a question. It's so awesome that he's made himself available and I really feel like I'm taking strides in the right direction!
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