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After Effects of Lumbar Fusion. HELP!!!!

bjfergebbjferge Posts: 123
edited 06/11/2012 - 8:33 AM in Back Surgery and Neck Surgery
Hi All,
Thanks for taking the time to read this, and all suggestions and comments are appreciated.
So heres the short version of before these strange symtoms. I had anterial lamanectony bilevel spinal fusion of L4-S1 with all the hardware, and cages with cadaver bone.
Before this I had mild pain in my right thigh, and sever back pain, caused by compression of the nerve roots.
Well, here is what I need help with. When I woke up in recovery, I couldn't feel my legs, and I had pain running down both legs to my pinkie toe, but I could move them. My neuro surgoen prescribed pain pills, and a walker. After a month, my legs became more mobile, but still had lots of numbness and pain. He ordered a MRI with contrast. He had during this month, ordered x-rays for every visit to check that my fusion was heeling, which it was.The MRI showed that the screws, cages, and rods where all in place, and not hitting any nerves. As far as I know, at 6 months I was 80% fused.
Since all this, I lost my job at 5 months out from my fusion. So I couldn't afford to go see my neurosurgoen. I started at this point seeing my primary care dr for this. She has me on 3600mg of neurotin a day, and 1-2 5/325 percs as needed, not to excceed 8 a day. Well, we all know how that can work somedays!
It's 2 1/2 yrs later, and my symtoms are as follows. I have numbness in the back and outside of my right leg, going from my back all the way down to my little toe. Along this path, there is a constant dull acke that runs along the same path, and at times it's sharp and stabbing, and others it burning. My left leg the numb runs down the back and side of my calf, down to my liitle toe. With both ankles clompletly tight, and numb. I also have unexplained bruising and swelling in both legs.
I did in Nov 08, go to a pm dr. That was a mistake. My primary care dr said that that can't happen from ESI, but I beg to differ. I let the pm dr put to shots in my back. One was placed by the S2, and that one did nothing, So the second one, and at my suggestion(am I stupid), was placed inbetween the L4-L5. Pm dr thinks my problem is scar tissue on the L5 and S1, and he couldn't place the shot there. This wonderful shot started the front of both legs burning. He then suggested that I have a scs, but the day of the appointment, they called and said I need $100,000 up front. Ya Right!!I have that in my back pocket!
So here I am in need of help. In Sept I will finally have insurance, so I can go to the dr, and find outs some answers. What I need to know is what kind of dr should I go to? Should I go back to my neurosurgeon, my physicarist(sp, neurologist, an orthopetist(sp), or some other kind of dr?
I would also like anyones best educated guess on what maybe my problem? What to do for it? Anything like that? I figure the more I know going in this time, the better off I'll be.
Sorry for the long post, but I realy need some answers. Thanks for everyones help!!!!
Bobbi Jo


  • My opinion, would be to start at neurologist with an emg/nerve conduction test...may want to try lyrica instead of the neurontin, or higher dose as it seems to ease some of the burning....
    You mentioned nerve impingement,which can mean either along healing process, or aa permenant result. This is what the test can tell you.

    Keep in mind I am not a medical profesional, nor have I played one on tv...lol....just anotherre spiney trying to lend a hand....

  • wow 100,000 up front for a stimulator. i wonder what the insurance co will pay for one. i guess 15,000. who gets taken here?
    i'm reading your history and i can feel the sadness you must feel with your current situation. I'm glad you have some hope that some of the pain can be eliminated.
    if it was me a would go to a new spinal surgeon or neuro surgeon who specializes on the spine. you dont want the original surgeon passing judgement on his own work. I would not recommend a neurologist as they dont have the experience with the spine that a spine surgeon has.
    I dont agree with the dr. that thought it was scar tissue. the problem started just after surgery before the scar tissue had formed.
    i would get at least two opinions from spinal surgeons.
    if surgery doesnt seem like the solution the stimulater might be an option. Keep us all posted here as we want to help you along on your quest for recovery
    best to you...pete

  • Thank you for all your suggestions. I agree and
    EMG needs to be done. Along with other tests to find out what's going on with my legs. I also feel my drugs do need to be changed to something more effective.
    Right now I'm torn between going to a neuro surgoen, which can diagnos my back and leg problem, but from past experience they aren't good a the drug part. Or I could go back to my physiatrist(sp), who can diagnos certain problems, does referals, and does prescribe drug as need for my condition.
    I'm just torn!!!! I feel I only have one chance to get this right. I've been bounced around this system for 9-10 yrs with a back/leg issue, and all I seem to do is get worse. I think this next time, I'll ended up in a wheelchair permently.
    Once again, thank you for your help. If anyone has any additional idea, or advice. Don't be affraid to state your opinion. All ideas are most appreciated.
    Bobbi Jo
  • I am sorry you are having to deal with so many problems resulting from your fusion. Did you ever get a copy of the operating room notes? I don't know how long they are kept on file, but if I were you, I would call the hospital's medical records office and request a copy of the surgeon's operating notes from your surgery.

    If you decide to go to another spinal surgeon, the notes might provide a clue. It certainly sounds like something occurred during surgery that caused the nerve problems. Often these occurrences are of a temporary nature.

    If you do not want to return to the original surgeon, I think I would look for a fellowship trained spinal surgeon who performs revision surgeries. S/he can order the needed tests, EMG, new MRI, whatever it is you will need and can coordinate your treatment plan.

    Were you seeing a physiatrist before? That could be a good choice, too, depending on the individual. The title of the specialty is doctor of Physical Medicine and Rehabilitation and they are often good at tracking down problems. Surgeons operate. Once the surgery is completed, they aren't all that interested in a long-term relationship!!

    In my opinion, you do not want to begin with a SCS. That is usually a last resort, when you are not a candidate for surgery or much else. I think it is possible you might need more surgery to attempt to resolve your problems.

    Please let us know how you're doing and keep posting with your comments and questions.

    xx Gwennie

    You might want to post under the back and neck surgery category. That area gets much more action!
  • Thanks Gwennie for the idea of moving this post. I'm looking forward to more ideas on what I should do. As I post in my other post, all ideas and advice is apprediated.
    Thanks for everyones help!
    Bobbi Jo
  • I agree that you need a good dr! I personally prefer the Neurosurgeons over the Phsyiatrist - I've done both.

    In the beginning I was NS shy - I was scared that all he would do is cut. I did not want surgery. So I went to the physiatrist. All it did was prolong my agony by another year until I was told I needed a NS. He did refer me to one that is slow to cut.
  • I have very much appreciated everyones suggestions, and I don't know If I've done this rightm but I have decided to go with both. I have made appointments with my old ns, and with my old physiatrist. I figured it's a start, and if I don't care for their answers or treatment, then I can always try again. Which is something I really don't want, but I'm not sure what other choices I have. It's hard finding good dr in my area, since I live in a very rural area.
    I have also did as it was suggested to get my operation records. I was impressed, since my surgery was 3/07/07, that they still had them. I'm also going to get all my medical records from the other drs. That way I have them all for future reference. I know my physiarist wanted my old xrays and mri that I have, but you all know dr's. They loose them, so I told them that I would bring them with me the day of my appointment.
    Once again thanks for all your suggestions, and if anyone has any other ideasm please feel free to share. I'm still looking. I know there is no miracle for me, but a little pain relief is so welcomed. Really, that's all I want anymore, and just not to get any worse. I guess that wasn't all I wanted! LOL!!!
    Thanks everyone! Please keep the suggestion coming!
    Bobbi Jo
  • Good luck to you Bobby Joe! You almost make me feel guilty for having what is so far a very successful surgery. I like the secong opinion from another ns idea myself...
  • Glad to hear you will have insurance again and can see a good doc. I would recommend (even though I'm no expert) that you go back to see your neurosurgeon. It sounds like nerve damage to me. Not sure what all they can do about the stuff you've had since surgery, but perhaps they can help with the burning and tingling you've had since the epi.

    I woke up from my surgery thinking that my right foot was pressing on the bed railing or something. Turns out there was no rail, I just have a strange tingling, burning numbness in the outer half of my right foot. It goes most of the way up the outer side of my leg. It's been about nine months now and I guess it's there for good. I hope you find some relief.


    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
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