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Thread: Could somebody please advise me? Paralysis in Foot!

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  1. #1
    Join Date
    Aug 2012
    Location
    San Francicsco Bay Area
    Posts
    127

    Could somebody please advise me? Paralysis in Foot!

    Hello Everyone:
    I came out of revision to the sacrum surgery in January at UC Davis with a paralyzed foot and can't walk on my own. My surgeon told me that my nerves had been "stretched" - either because I had been on the operating room table too long in a certain position (surgery had been estimated at six hours but took thirteen) or because the actual nerves in my spine had been stretched from the procedure - and that I would get better in six months. At the end of that time if I wasn't better I should see a neurologist. I do not understand why, when I woke up with no feeling in one foot, I wasn't immediately taken for a CT scan to find out what was wrong. It has now been six months and although I am in excruciating pain in my foot and cannot walk by myself, my surgeon or his nurse has not once called me to see how I am.

    My surgeon's advice at my follow-up was to wait six months. My GP, pain mgmt doctor, and PT's all told me that my "Foot Drop" would heal. I made a small amount of progress and then no more. Then I began doing research and realized that a pedicle screw could be causing my nerve damage, resulting in Foot Drop. I also read that the first six months of foot drop are crucial for treatment to be successful. I then referred myself to University of California San Francisco Spinal Neurology. I did not know which doctor to choose, but thought Neuro instead of Ortho because I had nerve damage. I sill do not really understand the difference in spinal Neuro and Ortho departments. I requested the doctor who looked to have the most lumbar and Scoli experience, but instead was assigned to a young man who seemed to have mostly cervical and little deformity experience. It took ten weeks to get the appointment even though I begged them because of the paralysis to see me sooner they would or could not; probably no time slots. All the time the clock on my Foot Drop is ticking. Finally I got the appointment. I brought my MRI, recent CT, etc. I was examined by a nice nurse practitioner and then the surgeon came in. He spent about ten minutes with me, no computer to look at images with me as no computer in room, and he said "you are probably are not going to get better since you have not already." Then he said that maybe there was an area at L5 that did not look right, but he wasn't sure. He kept saying he didn't know and that he would present my case at their Spinal conference the next week. This sounded promising to me. However, no follow up was booked for me so not knowing what to do I e-mailed on the portal system the surgeon the following week asking about the conference. I was answered by a PA I had not met who thanked me for my patience about the Spinal conference, but offered no further info on it. Since then, she has been the only person to communicate with me and although I have asked twice more (by email) about the conference she has not answered me about it, she has only ordered a CT Myleogram which I am having done today and said that some screws might be loose or off. I asked (again by email as that is what patients are instructed to do) if I would be having a follow-up with either her or the surgeon after the test results are in, but she told me that wouldn't be necessary and that we would just talk on the phone!

    I am really scared now. I face a lifetime of paralysis if I don't find someone qualified to re-operate on me. It took me months to get my one appointment, there is no where else for me to go around here, the PA and doctor won't even see me in person, I don't understand about this mysterious spinal conference, and I am terrified to ask questions or upset anyone there. I want to respect the system at UCSF and be a good patient, but I don't understand their system; I feel like it hasn't been explained to me. This would be my fifth Scoli revision and a complex one and the doctor said he wasn't sure what was going on in my spine...and yet the PA won't even meet with me. Please, is this normal procedure there? If Linda or anyone else who's been a patient there could advise me, I'd be really grateful. Maybe this is how it works there? Thank you so much,
    Last edited by Tableone; 07-05-2016 at 06:05 AM.
    1st surgery: Fused T1-L3 in 1987 with contoured Harrington Rods. Rods broke at top.
    2nd surgery: Re-done two weeks later; fused C7-L3. Left in chronic pain.
    3rd surgery: Hardware removal 1997, but still pain for 30 years.
    4th Surgery: Fused to the sacrum in 2016. Came out of surgery with left foot paralysis. (Drop Foot) Can't walk on my own.
    I'm blessed to have found my peace and reason to live not from a husband or kids (I have none) but from God and within myself.

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