CCSVI Diagnosis. Now I wait?

After getting my scan and having a consult with Dr. Mehta 2 weeks ago, things have been at a standstill. My many calls to the Vascular Center have yielded the same result: “You will be scheduled for the venoplasty, but we don’t know when.” On the upside, now I have a diagnosis code which I’m assuming will let me get the treatment somewhere else if I need to. Right now I’m trying to come up with Plan B and I wonder if anyone in Syracuse is performing the venograms/plasty? Maybe it’s time to start knocking on doors of vascular surgeons here in town. I don’t mind doing that, but I don’t know how I should go about it.  Phone calls? Those will probably be shunted (haha) by the receptionists who are busy with ‘normal’ patients. Should I mail a letter and packet of info? And if so, will it make it to the doctor’s hands? Should I show up at their office with a packet? Suggestions welcome!

Tomorrow I’ll call Dr. M’s again. In the meantime, I’m waiting for my very first grandbaby to arrive.  She should be here any day now!

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2 thoughts on “CCSVI Diagnosis. Now I wait?

  1. Donna,I have to ask is being in a hurry gonna help more now than next week or next month? Just because it helped some it might not help you.Call me an asshole I’m good with that! You will still be here to welcome your grandaughter and still have your own hope.I just don’t think jumping hoops is a good thing on your well being.Oh and were having a party thats another fun thing and your anniversy!See there are stresses here please stop making more for yourself.Luv,ya Patty

    • Thanks, Patty. I got awakened by a phone call this morning and my appointment is Oct 4th! I’ve become aware that people are getting uncomfortable with me pursuing this. For me the hoped-for benefits outweigh the risks. I know it seems like I don’t have ‘bad’ MS but I have issues that I want to stop from progressing. How else can I come over and eat Tammy’s great chili with you?

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