Well, it’s offically 2 years out since my spinal cord was roto rootered.
I “celebrated” by going to see dr. adler at stanford for a follow up since i refuse to go see johnson again (and wait 4 hrs in his waiting room). Joce came with me, it was really good to have someone else in the room with me — really wish i would have done that the first time instead of going by myself with no one to back me up.
Anyway, dr adler was very kind. He basically said that he did expect me to have surgery at some point, it’s just that he knew it would be so disruptive, and i didn’t have symptoms, that he felt like i should put off going through such an ordeal. Moreover, he would have recommended (or supervised) a surgery that would remove the tumor that was removable, leaving the ‘inoperable’ sections alone and treating those sections with his cyberknife. Since our meeting in Q4 2007 he’s treated multiple ependymoma cases with the cyberknife, all with good outcomes. He admitted to being pissed off at Johnson telling me that Adler hadn’t been in the operating room in years and that i didn’t want a radiation treatment – that made me feel a little better too. Nice to hear someone was pissed off on my behalf instead of like, ‘oh well – too bad’ He called Johnson’s brag to my doctor about me being ‘fine’ after surgery a ‘miscommunication’ so I guess that was just a nice way to put it… still, it’s just gross that my doctor kept insisting that adler was wrong about the surgical outcome and that i would be fine.
On the flip side, he said that johnson was an excellent technician and that someone lesser would have snapped my spinal cord and then I would be really screwed.
He wants me to go back and see johnson in person to show him the results. That i need to help inform his judgement so that other people dont suffer, but i dont think i can handle seeing him again. I cant get over it – okay so he was wrong about his abilities in relationship to my tumor but he cut the whole thing out and left me in a wheelchair — after telling my doctor i’d be fine — what kind off jerk does that? ultimately it is MY decision not his. and if i choose a different path the results and the responsibility are mine and mine alone. He destroyed my body and my life — and both are in complete ruin.
Adler was honest with me from the beginning. Having surgery = paralysis. the choice from there was up to me. I wish the others would have had a reality check. Or minimally had a doctor willing to double check the advice offered!
Anyway, on the rehab note I continue to make small improvements. I got rid of my bioness – don’t really need it for dorsiflexion (lift ankle) as much – but statrted walking with a cane to get more of the correct feeling back instead of being electricuted. And, I finally have a good hand therapist! We got my right thumb working up and slowly sleuthing out the problems on the left. Hopefully in another month, we’ll have sorted throuhg the issues and i’ll be on my way to closing my left hand into a fist.
that’s all to report.
cheers!
