Life with MS & EDS

April 15, 2010

Look for an Interventional Radiologist

Filed under: Uncategorized — by mseds @ 6:15 am
Tags: , , ,

I was incredibly fortunate to have gotten the lead on a doctor via Facebook.  I hit a dead-end with every neurologist I asked about CCSVI.  I’m sure many of you are in the same boat.  I was on the crazy long list at Buffalo and just figured I’d have to wait it out.  Then I heard about Dr. Bonn in Wynnewood, PA.  That’s just outside of Philly and far closer to me than the 6+ hour drive to Buffalo!  I called last week and saw him this week.

I strongly encourage you to start looking for interventional radiologists near your home.  They are out there and are far more receptive to the idea of CCSVI.  They are also very capable of doing the surgery.  They have been doing this for years for other types of patients (e.g., dialysis.)  This is nothing new to them — just a new cause for blocked veins.  It’s quite awesome!

If you are interested in knowing more about someone’s experiences, check out Persistent in PA!  Thanks, Janet, for blazing the trail!

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2 Comments »

  1. I want to have an experience like that. I am so happy for you. I know exactly how you felt before they found the blockages. I have not pursued a CCSVI person in my are, because my primary is such a dope. And I don’t feel like hunting down another primary right now. I am all in. I am all “doctored” out and need to just recoup for a while. I am so weary.

    Please keep writing. You may think the small details don’t interest anyone, but they do.

    Comment by karen — April 19, 2010 @ 12:30 pm

  2. Thanks so much, Karen! It’s so hard to find someone to listen about CCSVI. It’s hard to keep hearing “no.” I’m so thankful that I have health insurance that doesn’t require me to get a referral or I’d still be stuck. I can just go to specialists directly, so the IR was able to do all of the scripts and pre-approval steps.

    Comment by mseds — April 19, 2010 @ 8:16 pm


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