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Possessive neuro/ortho surgeons common throughout US?

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:29 AM in Back Surgery and Neck Surgery
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.



  • Hi Maureen,

    You sure have been through a lot. Is there someone who can go with you when you see the surgeon? When you are in so much pain, it is hard to concentrate, to ask questions and be assertive about getting answers. If you can, go to another city for a second opinion.

    Come join us in chat sometime. We are there to support you.

  • I am sorry to hear of all the problems you are having with your spine. I thought I had it bad in just dealing with the lumbar and you are dealing with the whole back.

    I just requested a second opinion after I had ALIF L5/S1 and I had to send all my medical records to this team of neurosurgeons that I had requested and they had to review my records and determine if they would even see me as a new patient cuz I had previous surgery. I am 8mos post op and still having a lot of pain as much and at times worse than before surgery. My orthosurgeon told me he did all he could orthopedic wise so I never though twice about going to see him again. I felt he had given up on me. I didn't even know how difficult it was to get someone to even review your file once you've had surgery until I was facing just that. It seems they could spell this out before you go under the knife as you had mentioned. I waited over a month to hear something and finally got approved for new patient visit that I had to wait another month to even get an appt. It is now coming to that time and my appt is Tuesday the 24th (say a little prayer for me :o)

    I understand your frustration Maureen. Especially the part about not getting your kids to understand cuz your body parts are still attaches at least the ones they can see. I have 2 kids and hubby and no support from him. He also thinks I am just lazy. I get tired of saying my back hurts so I keep it inside. My daughter (she's 13) is the most help. She does get sick of it though and gives me the teen attitude "why do I have to do everything"...roll of the eyes...huff and puff....then go to her room and text friends.

    Maureen, welcome to SH and I am glad that you found our community and that it is helpful. This place is a wonderful place to be. It's nice to communicate with people who truly understand what you are going through everyday.

    Please feel free to pm me anytime you would like to chat or have any questions, comments or concerns.
  • Maureen,

    You said you have a great surgeon. Are you talking about the new one who won't repair? I think it is a great idea to take some one along. From teaching I learned that you remember 5-10% of what you hear, so I took my husband with me. I knew that I was going to get a lot of information and would be nervous to retain all the information I heard. I also wanted a second opinion on the surgeon. After I left the appointment, I felt nauseous.

    I know that it would be a pain to go out of town to find another surgeon, but I would give it a try. Or you can keep looking in San Antonio. I don't have a great answer, but there should be someone who will be willing to help.
  • I didn't have time to read all of your post - but YES!! I found that in Utah the surgeons are VERY strict about not accepting someone else's patient.

    My insurance company would not give me a referral for a second opinion - they stated that it's a real big no-no and they STRONGLY suggested I stick with my current neuro. And I only wanted a second opinion before going under the knife - ya know?

    I'm pretty sure it is all medication-based. There are some big Rx abuse problems here and they think you are shopping for drugs. It was so unfair. I was SO unsure about surgery and I never did ask for meds.

    I'm lucky to have chosen a good surgeon to begin with. I did go ahead with the fusion and everything turned out very well for me.
  • Welcome Maureen. I can only offer up my experience with this situation.

    I had a 3 level ACDF. Withing 5 days I began to have severe right arm pain (not present before surgery). I called my surgeon and was given a steroid taper. No help. They finally saw me and decided that I had muscle spasms. No poop, I came out of surgery with them. In about another 5 days I noticed that my right tricep was GONE, completely atrophied. I called again, went in and had an MRI. We looked at it and he told me it was unremarkable. To my untrained eye it just didn't look right.

    This went on for 4 months. I finally got a copy of the MRI and took it to my neurologist. She went into her office to look at it and came back, took me by the hands and told me that she didn't know how I even made into her office. She had already called another surgeon and begged him to take me on as a patient, against his policy. He looked over my films and took me on. I had a revision done within 2 weeks.

    If possible, have another doctor go to bat for you. They have much more power and can call in favors and override that good ol boy mentality. Had it not been for her I may have gone all the way to a wheelchair.

    Good luck to you. You've been through a lot already and deserve to be treated well.

  • Most surgeons do not want to touch another surgeon's work because of the risk of getting sued. Once they open you up, there is no way to prove that any problems that may arise are from the original surgeon and not from them. This country has become very "sue-happy". don;t get me wrong, there are times when litigation is perfectly justified, but because of all the bull crap that people file suits over, doctors have to be extremely careful so they are only responsible for their own problems/mistakes..etc.....

    When people sue for bull crap reasons (not for legitimate reasons), this is one of the fall-outs form that - people whoa re legitimately looking for pain relief, second opinions, etc..who can not get them because doctors are afraid.

    Sad, but true..
  • My Doc is with the Emory Orthopedic and Spine Hospital. Its a fabulous facility with top rate surgeons, and a lot of innovative procedures for the spine and for patient care. You may want to check them out. I'm so sorry for all you've been through...its so hard to let someone work on your spine when you haven't spent much time with them, but at my consult, the surgeon spent at least 45 minutes with me explaining everything and answering all questions with respect and care.
  • I'm sure this is a very difficult situation for you, but you can take some control.

    Although I wasn't in your same situation (I had not had a prior surgery), I spent almost a year looking for a surgeon for my first surgery. I met with 6 surgeons, some of whom were total a-holes, and finally found the one with whom I felt comfortable. His practice is 4 hours away from me, and every visit involves at least 2 days of travel and expensive lodging, but I'm glad I didn't let that prevent me from seeing him.

    Here's some advice:

    - Keep looking, even if you must go out of town. You CAN find a good surgeon with whom you can communicate. If a surgeon doesn't want to talk to you because of a prior surgery, (s)he's not the right surgeon anyway. Get a list of spine surgeons who are covered by your insurance and research them all on the Internet. You may not have actually talked to every spine surgeon in San Antonio yet, so start there. If necessary, expand the search to other areas--if you can't go very far (e.g., Atlanta), at least look in Houston and Austin.

    - ALWAYS take someone with you for appointments. You simply can get too overwhelmed to remember everything you hear or want to ask (especially if you're on medication). I think it also helps send the message to the doctor that you are prepared and won't be dismissed.

    - Always take a list of prepared comments and questions and a note pad to write down answers and other information. You said you may have trouble explaining things, and this is another good reason to write it all down in advance.

    - Take a tape recorder and record the appointment for later playback (this has helped me a lot).

    - Research your condition and your surgery.

    - If you're not sure what was done to you already, find out. Get copies of your post-op reports, clinical notes, and ask your doctor's office for a description of the procedure.

    - Get copies of all your images (and the radiologist reports) so you can take them with you to other surgeons.

    Good luck.
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