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AnonymousUserAAnonymousUser Posts: 49,578
edited 06/11/2012 - 7:22 AM in Scoliosis
I am new to the forum and searching for someone who can please give me some advice. I am 29 years old and had a spinal fusion at the age of 11 because of a 47 degree curvature. I have 2 C-D rods, one on each side of my spine that hook and also have pins in 3 places across them. I am not sure exactly (without looking at chart) what levels of my spine the rods begin and end but they are about 10-12 inches in length. I have always suffered from back pain since the surgery but became accustomed to it since it was never that severe. The last 4 years it has progressively gotten worse and worse. I have been in pain management for 3 years now. I have been in PT, had countless trigger point injections, pain meds, nerve pain meds, exercise, unsuccessful nerve blocks, and accupuncture. I have seen two neurosurgeons, one of which is supposed to be the best in Denver. They both saw all of my images (MRI's, X-Rays, Bone Scans) and chart history. They both told me my pain is not caused by the hardware. One of them told me that removal of the rods is not even an option at all. He said they would have to use a diamond plated saw to cut the stainless steel and would have to cut them into many pieces to remove them. This would create metal shavings not to mention all of the bone and nerves they would have to cut to get to them. He said I would be worse off than I am now.

The pain is so bad that I am miserable every hour of everyday. I don't allow myself to take anything stronger that Lortab 7.5 as it is prescribed and it is not even touching the pain. I am also on an anti-inflamatory, have tried Lyrica, and also muscle relaxers but it doesn't help. My line of work demands complete alertness and attention to detail; I am responsible for many lives and cannot risk others safety so I have to be careful what meds I take. I don't know where to go from here or what options I have.

My sister in law is a surgical RN for a Neurosurgeon that she says is great and I am in the process of getting an appointment with him. I am just so discouraged because of the past two opinions I have been given. Does anyone have any suggestions? Has anyone been through a similar situation? I would appreciate any and ALL advice. Thank you in advance.


  • Hi Carrie,

    Welcome to Spine Health. Wow that is a tough decision and I have no idea what I would do were I in your shoes.

    It sounds like the risk of the hardware removal could be ten times worse than what you are suffering now. So you trade horrible for either relief or the worst thing imaginable.

    Since I am someone that had muscle denervation as a result of surgery (one of those unexpected not normal outcomes) It has lead to more complications and who knows what in the future.

    So if the NS is saying there's the possibility of denervation ... wow, my personal response is THINK TWICE !!!

    Having metal shavings wandering around in your back ... not a good thought, although I'm sure with the imaging capabilities of today they could find most.

    How long of a surgery would that be? I would think that the length of the surgery and the length of recouperation afterwards would be incredible.

    Have you thought about or discussed a pain pump or neurostimulator.

    I wish I could offer more ...

    Please let us know what the next NS has to say.

    Once again, welcome.

  • Just checkin in to see if you made it back to the forum or not. Lots of good people here that can give you a tremendous amount of support.

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  • Thanks for your support; I really do appreciate it. I will let you know what the Dr. says! Take care, talk to you soon!
  • Carrie,

    It's great to hear back from you. Please let us know what the doc has to say.

    Support ... no problem, that's what we're here for!!!

  • Hi carrie,
    Just want you to know I hear your pain. I don't think mine is from the scoliosis. I am having other problems. That is weird they can't find the cause of your pain. I just wanted you to know you are not alone. I did read somewhere that another girl is getting some of her hardware removed because it is broken. I did not know they could break. If you need someone to talk to I'm here for you. I know what it feels like to be stiff and ache all the time and now have new PAIN and just let your mind go crazy with the possibilities of what can happen and what can they do to fix us. I'm home all day, not even working anymore.
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  • I have that same situation. Desperate pain everyday from hardware. I have only had mine 1 /12 years. I will have it removed within 1 more year. I can't live like this, no one can understand. I will get mine taken out by the doctors that put it in. I want to die most of the time.

  • wbrigode:

    Wow, you sound just like me. I have such incredible pain and most of the time I just want to die too. I had hardware put in in June 15/16,09, it was my 4th surgery. I go minute by minute too with this pain.

    So the doc who put it in wants to take it out -(that would be my 5th surgery) because I said, "take it all out!" I was lying in the examination room crying desperately. Lying down is the least uncomfortable position. I am pissed because the very first device he put in me ('07) the dynesys system had six screws. I was told by two surgeons, an anesthesiologist and an radiology doc that 2 of the 6 screws were loose. one said one was broken. The dynesys system works like a spring, so that stuff is moving in there with my movements. So, back in June I asked him to take the dynesys out. He didn't and said that it would disrupt the stability of my spine. Now, he's taking it all out on Sept. 14. I asked him wasn't it too soon and he said you said you wanted it all out. What is he the doc with more knowledge or what?

    I'm scared and am not sure what to do, but I am in so much pain, I take 10 X the amount of meds I took pre=op Some people who have had back surgeries or even those who haven't say the same thing isn't it too soon? What about the stability of my back? I don't get it - I think he should have taken out the dynesys back in June which adds to the pain greatly. Plus it didn't help when my toe got broken on the nerve damaged lower leg. Actually both of my legs have peripheral neuropathy, the were heaing but the june surgery made it worse! I haven't any real life I have pretty much been a shut in for the last couple of years and I'm only 44. I tried to start school again, I'd been doing that part time since 03, but it feels like too much. I'm barely breathing the whole time I am there.

    I wonder about the first comment above where some doctor said that the hardware doesn't cause pain. Well, my body is spasming against it and that is the majority of my pain. I'm sorry I went on but, I'm dying here. I'd appreciate any opinions or contributions.
  • I read the blog about the 29 yr old . wondered how did her surgery turn out. I am status post back su rgery in '04 and revision in '07 and still taking pain medication. I recently had a bunionectomy, right foot las year and 12/09 the left foot and had the dr. take out the screws from the right foot because of pain and numbness/tingleing. It's all gone one week after surgery. Is it possible that the screws and pins in my back would do the same thing if I had them removed ? I would really like to know . I am tired of taking pills so far at least 7 to 8 years.
  • If anyone is still interested in this discussion and anyone would still let others know how you are doing now, please respond. I am late to see this chat but I am in a similar situtation and have so much pain I would really like to talk to others out there.
  • Hi Katie
    I am also in a similar situation - I think.
    If you don't mind me asking what type of pain do you have. Although my back is usually stiff it is really the nerve pain down my leg that is the problem. I have my surgeon who says it is scar tissue and yet 2 other Doctors think the hardware is the problem.
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