I think I'm doing this backwards, but will rectify that as soon as I'm done typing.
I am not aware if the problem I have encountered is 'native' to Texas or exists throughout the entire surgical community.
The surgeons, both neuro and ortho will not touch a patient who has been repaired by another surgeon in town. My thoracic surgery may only be repaired, etc., by the original surgeon (oddly enough I believe he is the only neuro surgeon in San Antonio who will re-operate, so to speak), no other surgeon will touch my thoracic spine.
I have severe stenosis of all but two C-spine vertebrae. I have lumbar problems but am a bit traumatized by my thoracic surgery. Please tell patients prior to their being rolled down the hallway to the OR that they are having a thorecotomy, and by the way, meet your thoracic surgeon.
I have a great surgeon, but we do not seem to communicate at any level. His introduction when I first saw him for cervical and lumbar pain, was not his name (I guessed by the scrubs he was the doc), it was "you are really lucky you aren't paralyzed." OK, pick me up off the floor and it is in a part of my spine that doesn't hurt. (Thoracic) A few minutes into the conversation, my mind had frozen, the doc said that, "as soon as we're done with the thoracic we need to work on the cervical and lumbar." OK, I'm a little shaky in the trust department. I asked for a second opinion, but when the second doc heard I had seen, only seen, the other doctor he refused to do the surgery. He did explain how severe the paralysis would be if I ignored the problem. He talked to me, conversed, explained. I'm not smart about spinal problems, teach me please.
After begging for a year for a follow up scan, as I fell the week I returned from the hospital. (I'm not even sure what I had done I'm embarrassed to admit. the neuro guy said it was a vertebrectomy, pain doc says laminectomy.) Bottom half T-7, all T-8, top half T-9 removed and replaced with titanium cages. Exactly a week after this surgery the same doctor of few calming words came to my room and said "We are doing more surgery tomorrow." OK, I'm responsible for my body, but I was also heavily drugged and he could have probably operated without anesthesia at that point. Two rods T-6 to 10 with a total (I believe) of four pedicle screws were inserted. Back to the scan. Eighteen months after surgery I finally had a CAT scan (I was in a lot of pain), this time the few words were, "Wow, look at this." I was then, I felt, triumphantly shown how "close" the tip of the bottom right screw had come to my aorta. I went home and had a nervous breakdown. Saw doc again, he got mad. Stated this would not kill me. Of course, I have severe osteoporosis and T-8 which I thought was gone is currently experiencing a 'chronic compression fracture with approx 60% loss ht anteriorly. Also post op changes of partial corpectomy at T-8 with possible involvement of T7 and T9.
I am so tired of this. I am too old to go to medical school. I am so tired and in so much pain I could cry but it would take too much energy. My neurologist, saw her to rule out any other diseases as NF runs in my family, ordered MRI of C and T spine and brain. When she saw the results of C-spine she recommended I see a surgeon as soon as possible.
I believe I must have a problem explaining how I feel. I had initially like the doc I saw for the C spine, but since my hands/legs, etc weren't experiencing any of the behaviors he mentioned, it was suggested I wait until it got worse. It's worse. Loss of bowel and bladder control intermittently. Dead, left arm, cold hand only once, thank goodness.
So who do I go to now? Since I saw doc B about the C-spine only he or doc A (the original) will work on it. It feels as if they are so blase about all this surgery. A doctor friend was going to recommend an ortho doc until I said it was for a surgery eval. NOT IN SAN ANTONIO.
Somewhere inside, probably my spine;0, this self-made policy seems unethical. I don't like not having the opportunity to meet a doctor more than once or even twice before I put my life (which is pretty useless now) in their hands. Any suggestions on where I move or am I going to run into this quirk all over the states?
Sure wrote a lot when I asked the above question at the beginning of this tirade. I'm at the end of my tether. I am not living, I am existing. Too many pain meds, no PT.
I hope someone can give me some ideas or options. I'm feeling really alone here and since my arms and/or legs haven't fallen off my children believe I am not in pain, just lazy;-)
I just want to say that I think this is a wonderful site and I'm not sure why it took me so long to write for help. I would appreciate any help..thank you.