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...
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.
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!
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!
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).
Users browsing this forum: pushingForward