Discussion in 'The Watercooler' started by timer lady, Feb 2, 2008.

  1. timer lady

    timer lady Queen of Hearts

    We finally got the fluroscene angiogram completed at the eye specialist yesterday. It was a challenge but it's done.

    You should see the pictures this thing produced - my eyes look like little planets (they gave me copies right away for Mayo Clinic).

    Final results - treat as presumed Susac Syndrome. With some complications from the shingles , spinal meningitis & the CNS involvement that I had last August. He thinks Mayo should straighten that one out. He saw something in my left eye that isn't consistent with Susac, rather left over from the CNS infection.

    Kind of anti- climatic in my mind as everyone else assumed this was the diagnosis anyway.

    Now, I'm going to beg my neurologist to start treatment sooner than Mayo - I doubt that will happen but I hate to wait another month with the diagnosis nailed down. And saying that, I doubt I will have care for kt in place before my given appointment at Mayo. They are searching for a 2 week placement for kt....sigh. It may end up that husband cannot make any of this trip with me - my sister & sister in law were coming up anyway to help me, just wanted my husband along. You know, how silly we can get about things like that.


  2. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    glad that testing is over!

    You know, I must have missed something. I thought the Mayo Clinic was out because you had gotten the diagnosis of Susac? Are they going to do further testing to make sure the diagnosis is correct or attempt a different treatment plan?

    Hope care is found for kt so husband can go along with you. Would kt be alright if one of your sisters stayed with her and husband went with you?

  3. timer lady

    timer lady Queen of Hearts


    This has been more than chaotic. My neuro doctor along with a few other doctors asked Mayo to reconsider seeing me as a patient; they would like Mayo to "confirm" the Susac diagnosis & then set up the treatment protocols & such. I think it was a couple weeks back that I got the call from Mayo that I had an appointment mid March.

    I don't understand the medical politics in getting into Mayo Clinic - I know it's difficult. I believe that someone there is doing research on Susac's & that's why I got in this time.

    I've lost track of the treatment plan so I purchased a personal medical records software package. (I can track the entire family in many areas & it will sync to my PDA so I can carry it with me. ) In the meantime, I'm writing then recording on my computer everything that's being said to me in appts. There is just a bunch of information that is coming my way - the hard part is that it's all so repetitive & means little to me.

    Keep fingers crossed about care for kt - my sister is willing to stay with kt except for the crisis situations. It's over her head & she's not comfortable doing it.

  4. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member

    Linda, glad to here the Mayo reconsidered. I must have missed the update somewhere! I think it is great that someone is doing some sort of research study on Susac. Perhaps you can get some different options and hear some positive recovery stories. And, hopefully with the presentation of a treatment plan from one source, it will be a little less "unmuddled".