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Help, Need Advice Now

ldavis2333lldavis2333 Posts: 108
edited 06/11/2012 - 8:56 AM in Degenerative Disc Disease
I have been visiting this site for a few years. I have learned so much, sometimes too much. I appreciate the honesty and caring so much form people who KNOW.

I am seeing an OS on Monday for a second opinion. I had an appointment with my last OS Assistant last week, whom I had never met before. I no longer have any confidence after 2 spine fusions. I feel like they dumped me as soon as they found out they could not "FIX" me.

I have been going to the pain clinic for several months. I've had every injection possible along with Rhizotomy to my lumbar spine 3 weeks ago. The leg pain is much better. The back pain is still miserable. Most of the time I can barely stand up straight. Walking is becoming almost impossible. I have cages at L3 with artificial compound. The fusion is well healed. L2 disk is herniated and L4 is ruptured and extruding disc material.

I had a cervical fusion with rods and screws 3 years ago from C3 to C7. Surgeon admitted he should have gone further because symptoms returned shortly after surgery. I have a lot of nerve damage and scar tissue. At the time of the surgery, I could barely walk and had a lot of balance problems, foot dropping, pain etc. Now, I have very little feeling in all of my extremities. I can cut myself and not even know it.

At this point it is so hard to differentiate where all of my symptoms are coming from. I have a hard time even explaining it to the Dr.'s. All I know is that whatever risk there is of not getting a lot of relief from additional lumbar surgery, I am willing to take the risk. Without surgery, I will soon be in a wheelchair. I have put it off for over a year know. I am completely exasperated over pain management. My experience has been that it does not exist.

My daughter is coming with :S :S :S me Monday. I hope she can help explain to she surgeon the condition I am in. I have not given up hope for a better quality of life. Coping with the quality of my medical care is extremely stressful. My career was in Healthcare from insurance to actually working in a well known Spine Center. I know the system and that makes it even harder.

I am hoping to hear what anyone else thinks of my situation. Maybe I need to approach it differently. I honestly feel like my lumbar spine is about to cave in. I am so afraid of falling. Any advise would be helpful. Sorry to be such a long post, but as you can see, it's very complicated. Thanks, Lorraine


  • it sounds like you really need help from someone.

    i hope that your appointment on monday will give some hope for your future.

    i am also in a position where i am not sure where my symptoms are coming from because i have spine degeneration in my cervical, thoracic and lumbar spine.

    before your cervical fusion, did they say that your walking and balance problems were coming from your neck?

    below are a couple of links that might help you to prepare for your appointment with your daughter.



    what diagnosis have you been given?

    i will be thinking of you and hope that you will let us know how you get on. :-)

  • Hi,

    First do you have myelopathy. It sounds by the symptoms you had pre-surgery on the cervical spine were myelopathy. If so did they tell you that the damage is done and the surgery was done to stop the progression, but not reverse it? I can relate to not having feeling in the hands and cutting yourself, but worse is the weakness, that accompanies it. I have the same cervical fusion as you, and i am not sure why your surgeon said he didn't go far enough? Is your cervical fusion solid? Do you still have your hardware? Sometimes if there is issues post surgery hardware can be a issue.

    AS far as your foot drop is it the same leg as your lumbar issues? If I understood correctly your foot drop is from the cervical spine? Did you have lumbar issues at the same time? You might have cross over that both are symptoms of both areas, why you didn't get good relief, and fixing the lumbar will get you going, fingers crossed.

    The second opinion is the way to go, as sometimes the fresh set of eyes is a good thing. Be sure to have all your films with you, and a time line written out of everything. It might help if you could send it early, as you have a lot going on, and give the surgeon a chance to get a good look. But if not, have all your medications currently using, and what you have tried. Also have all treatments listed out both surgical and conservative. I would also make a clear idea of where the pain is and what kind of pain it is, such as pins and needles, burning, stabbing, aching, numb and so forth. With so much going on you want to be prepared as much as you can. Also Jelly put the links above for questions, so use them, make a good list of questions. I would make two list one if they said no surgery is needed, then a second, if a surgery is needed. That way your completely prepared. We often don't get to much time, so you want to be sure to maximize the time with the doctor.

    Good luck and keep us posted as to what happens. Hopefully they will have some good answers for you.
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  • The surgeon I am seeing Monday, I had seen him once before. He recommended a nerve block before doing any surgery. The nerve block was not helpful at all. I agree that alot of the problems I am having are a result of the cervical fusion. I am noticing those symptoms are getting worse. I really don't know what's happening with my neck and the hardware right now. I had the rhizotomy done on my neck last year and that has helped a lot for pain. I know that once my lumbar spine is dealt with, I will need to get my neck checked out again. I was really in bad shape before that was done. I believe these are the reasons why the previous surgeon wants to drop me. I did bring my films and reports to the the new Dr. when I first met him. I will bring them again. He commented they were done in a different format than he is used to and had a hard time reading it. I am hoping he will order another whole new set of MRI's. I did have a myelogram on my lumber spine before that fusion. I know I will have to have another. They really suck. I can make a list of questions pro and con on surgery and meds. I will check out the websites too. I am so overwhelmed mentally and been suffering in pain for a long time, I keep getting the feeling that no one wants to treat me, This has been going on at least 8 years. I am 55 and intend to get a few more quality years. I won't be able to if I can't find the best professional help. I also contacted case management at my insurance to see what help I can get in coordinating all of this.

    Thanks so much for your responses and you both gave me a lot to think about. I will keep you posted as long as I don't get blown away by this hurricane.lol

  • I saw the Dr. today and he is recommending a Laminectomy at L3. He said there is nothing he can do about my back pain. The Laminectomy could give me slight relief with back pain because the disk is probably impinging the nerves. It was a little disappointing. I am really sick of the epidurals and nerve blocks and they don't provide much relief. I am just concerned that if I have the Laminectomy, I could actually end up with more back pain and leg pain right now is not too bad. I am thinking more about the big picture. I tried to explain to him how much the back pain has been incapacitating and I got the feeling he wasn't interested in what I was saying. He kept repeating that there is nothing he can do about my back. I am just concerned that a year from now I will be back for a fusion. How am I supposed to exercise in this much pain? I keep hitting one wall after the next. He said I will need a new MRI before the surgery. I am glad about that because I think it is definitely time for a new one. Any thoughts would be appreciated. Thanks, Lorraine
  • Like many others, this is a good time to seek other opinions, and maybe too more diagnostic testing to see what fully is going on.

    Lami might not be the one and only. I went through several specialists and surgeons because my body said one thing, and they said another - my body has been pretty spot on.

    Please stick with it. I have found that Neurosurgeons look at things totally differently than does Orthopedic Spine surgeons... Just a thought.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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