Inquiring minds ….

January 11, 2011 at 6:35 pm

Lori and exosurf,

My neuro did not tell me about these SCT clincial trials – I found out from this forum/Alice about the procedure and brought it to him. There is lots of stuff already written on the forum, so I won’t repeat it. You can do a search to find all that’s already been posted.

The current age limit is 65 (I think), so you have time, exosurf. I am 60 and still eligible. Not sure on the cost – if insurance doesn’t pay, I believe it’s up to $150,000. If you do have insurance, depends on what kind as to what will be paid.

The application process is simple and POCs are listed in some of the earlier SCT posts (if you need me to send, IM me and I will be happy to respond). After reviewing my application, I was contacted and an appointment made for my evaluation. This consists of going to Chicago for a few days, meeting the doctors involved and having some tests done. I contacted my insurance and told them I wanted to go to Northwestern for a second opinion and they approved it. That said, still not sure what they will pay (I know they won’t pay my airline ticket or hotel!!). I’m told, for me and my insurance, that Northwestern is “in plan”, so hopefully I won’t suffer sticker shock once I get there!

I am taking this one step at a time. First, got my neuro to really look into this (he even called Dr. Burt at NW) and he agreed it is worth the effort. Next, got my application in and based on the preliminary review, was accepted for the consultation/evaluation. If I’m told next week that I am a viable candidate, then my next step will be to get my insurance involved. I have not figured everything out logistically yet … again, one step at a time! It’s all my weary mind can handle!!!!

As a note – I was getting better on the IVIG as shown with nerve conduction studies – then it went the wrong way late last May and I’m tired of it all – so my application went in before Christmas and, well, we’ll see!

Good luck to you both,