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Getting nervous about appointment

MomofthreeboysMMomofthreeboys Posts: 73
edited 06/11/2012 - 8:36 AM in Back Surgery and Neck Surgery
going back to my NS on the 17th after seeing 2 neurologists and having an FCE done(hubby coming). I'm really, really nervous. Both neurologists said my symptoms of back pain and leg pain are not 'neurological' and they both think it's my hardware. The first one was a jerk , didn't even examine me and told me I'll never get better. They second one did a complete exam but came to the same conclusion. Neither would order an EMG, I don't know why. The FCE was done I guess to stop my PT since I was not progressing, I'm just hoping it's not worker's comp's way of trying to say I can work because I cannot. I can't even walk for 10 minutes without my legs going numb. Not to mention PAIN. I'm just so scared that I'm going to go to the surgeon and he still isn't going to know what is wrong with me. I'm 8 months out and worse than before surgery. Shouldn't I have had some progress by now?? PT discharged me because after6 months they couldn't help me anymore. I feel so defeated. I know I'm not alone here but needed to vent. I'm feeling very nervous, sad, scared, and actually terrified that noone will be able to fix me.
Mom to Tony 13, Gavin 9, and Donovan 7
Surgery 1/07/2009:
1. L3-4 decompression laminectomy and foraminotomy
2. Left complete L3-4 discectomy with decompression of L4 root.
3. Posterior lumbar interbody fusion, L3-4 with 10-mm Capstone cage and autograph.
4. Posterior spinal fusion L3-L5 with iliac bone graph and BMP
5. Legacy instrumentation, L3 to L5


  • Being nervous is definitely understandable. If the NS doesn't know what to do, then find another. And another and another if necessary. Sometimes it takes a lot of persistence on the part of the patient to find relief and the right doctor.

    I wish you luck at your appointment and hope that you finally get some answers.

  • Mom

    Always know that you are never alone. It may take a while longer but there will be answers, solutions and finally relief for you. We are all facing a medical area that is not easy or quick to diagnose or fix.

    Taking your husband is a great idea!! Make you list of questions now and discuss them with your husband before the visit. And don't be afraid to take out the list in the office and make sure you have everything answered.

    And if this doctor can't give you answers (and I don't mean just giving you answers that you want) then it is time for a new doctor. And another. And another if necessary. Like regular people, we don't always mesh with all doctors. Think of it this way - In your kids class there are 25 or so kids but you don't like all of the parents. So why are we expected to like all doctors just because they are doctors?

    Good luck with your appointment. Just pretend that we are all standing there in the exam room with you. The doctor will wonder why you have that little smile :)

  • First, what is FCE?

    Second, why did you see two neurologists?? And, why did they say it was your hardware? Did they have any reasons?

    Obviously I am really guessing here -- but I have a feeling that when neurologists tells you it is not "neurological" it may mean something different from what a spinal surgeon might tell you in this regard.

    I am an expert on this topic. All my pain has always been in my leg, resulting in an inability to walk any distance or stand more than a minute. I have had two "successful" surgeries, but my symptoms remain the same as they were prior to the first surgery. I have spent the last year gradually figuring out where the hang up is -- this has been a combined effort from two different pain management docs, my acupuncturist/Oriental medicine/"rearranger" guy and my second surgeon.(the one who did my second surgery). The guy that has helped me the most is my rearranger guy. He only works on orthopedic cases and all his background has been invaluable. I had him review all my MRIs, etc. He obviously does a lot of work with soft tissue and he fills in all the areas where the surgeons are just not interested in even thinking about. I am having a positional MRI in two weeks and I feel sure that is going to show the spot where my nerve is getting pinched. Then I'll have to decide if I want more fusion, as I have been told that will be the only procedure that will help.

    But enough about ME -- sorry @) My point about the neurologist is that he may be telling you that technically there is nothing showing up wrong with the nerve's FUNCTION. It could be functioning fine but could still be causing you tons of pain.

    They are not being honest with you if they tell you they can tell how the nerves are behaving, especially without doing any testing. Both my surgeons have become friends and I have heard interesting stories from both of them concerning nerves and how unpredictable they are.

    Has anyone suggested to you that scar tissue might be an issue or that BMP has overgrown the cage and might be pushing on a nerve?

    Where specifically is your pain? Is it the same as you had prior to surgery?

    All I can say is do not give up. AT some point there comes a point where we need to accept the outcomes of our surgeries, but you are far from that point, IMHO.

    When you run out of ideas, just ask -- I'm at least a year ahead of you on trying to track down answers on nerve pain!!

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