Well, first, it's great to be back. I was very sick one day while there...then very sick on Sat and Sunday. Feel like a million today so far, thank God.
In a nutshell (though it took at least an hour for me to grasp/gather it all while talking to Dr. B)... The tethered cord release allowed my brainstem and cerebellum to move back up into normal! Good news!
We talked a lot about my situation with the C1 frx and occipital condyles dislocation. Dr. B showed me what those are in his anatomy book, I was glad to learn. He warned me to avoid MVAs, said my C1 could slice thru my spinal cord.
He said MY brainstem compression comes from the C1 ring (the brainstem/spinal cord runs thru that), not anything to do with my odontoid/C2 pressing against it. That was new and interesting and I also learned a lot of other things, even about CM etc.
I am to work with my local bone doctor and get my bones up to what he feels is the best shape they can be given my osteopenia...THEN when I feel I'm up to the risk (and Dr. B says I will reach that point), we will do the fusion. He said he may open me up and try a screw into the bones and if they are poor, he'd just close me up and no fusion for me.
He said, tho I am a surgical candidate from now til eternity, I'm not getting any younger, and also we want him to be around to do it (AMEN!)
I asked why the more I do, the less I can do. His answer was brilliant in its simplicity: you are doing the wrong things. I came away with six scripts for inversion table therapy; an air type cervical traction unit; a new Aspen Vista collar; a Johnson CTO; PT therapy. He wants me to try ellyptical and water therapy. I am willing to try it all. He said they are trying now to get people more into shape in their cervical areas before doing fusions now. Makes good sense to me.
He said several times that my situation was special and once he said it was "off the charts unusual." He said that when someone's OR report is longer than 3 pages, that means it was a very difficult, and mine was six pages. He highlighted all the things that gave the surgeons big headaches and made the TC surgery 7.5 hours...including a very thin dura so they had to take autogenous paraspinal muscle tissue from various places and beef up the areas where the dura was so thin.
It was well worth the trip and agony after the trip to get things firm in my mind. We took him some NH white chocolate! My sister gets it in NH, where I grew up.
So, for me, bottom line: don't walk on hard surfaces etc, only do elyptical training and water therapy. Do cervical core strengthening (hope I can do these things, I've not been able to in the past and I've done a lot of Cervical core exercises!). Work with my hematologist/oncologist to get my bones into the best shape they can be.
Then, when I am ready, try the fusion. I have an appt for Wed. to share this with my hemo...I want so badly to be better and will work as required to get there, if it's possible.
thanks for your prayers for me for my trip. They worked, all went very well and no lost luggage! I so love Dr. B, he restored my hope in being fixed in the future. I got a lot of HOPE back after talking to him!
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