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Time for a new NS?

MomofthreeboysMMomofthreeboys Posts: 73
edited 06/11/2012 - 8:35 AM in Back Surgery and Neck Surgery
I had a fusion L3-5 in January followed by PT aqua and land since. I am being discharged from PT because I have not progressed. I have seen 2 neurologists that can't figure out what is wrong with me. I had a clean MRI in April. So basically I had this sugery, it looks like it went just fine but in all this time I have not gotten a bit better. My NS is just kinda shrugging his shoulders. I have lower back pain with severe pain in both my legs. I walk with a cane, sometimes a walker. I've asked for an EMG and noone will order it, they say it won't provide any valuable information. Does anyone have any advise????? I cry everyday (yes I see psych) I just can't take this. There has to be someone out there that can figure out what the heck is wrong with me. I guess I'm going to ask for a referral to pain management but I really don't want to give up there. And my hubby is ready to do anything, find a new NS, even go to John's Hopkins if we have to, but if the MRI is clean I just don't see the point.Anyone?
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


  • I was wondering where you'd gone off to. Have not seen you in quite a while!

    Sorry you are still not getting better. You know, everyone is entitled to a second (even a third) opinion. I would maybe see a different NS; bring reports from your surgery, MRIs, etc. Well, the actual MRI film would be better (any doctor worth his weight will tell you those films can be interpreted differently by 2 different docs). Maybe your doctor (or the one who read the film) missed something?

    Are you sure you've given yourself enough time to heal from the surgery?

    Does your insurance dictate the NS has to order the EMG? Could your GP order one for you? I had a doctor once who refused to xray me; I told him to make sure he includes in my office notes that I requested it and he refused... I went to another doctor. Got an xray and MRI, subsequent ESIs, Radiofrequency Ablation, had surgery and the rest, my dear, is Spine Health history.

    Whatever your next move is, I hope you are able to find some relief - or direction. It's always good when we can "KNOW OUR ENEMY". Easier to fight back that way.

    Take care!
  • I'm sorry you're going through so much and that the pain is so bad.

    I do think it's time for another opinion, but from a fellowship-trained spine surgeon - someone who ONLY works on the spine.

    The thing about MRIs - it's all in the interpretation, not necessarily the MRI itself. You could give the same MRI to three doctors and get three different readings and diagnoses.

    The main thing is don't give up. Keep looking until you find someone who can help you. It could be scar tissue, or overgrown BMP, but whatever it is, there's a doc out there that will be able to help you, one way or another. Research docs on the "Find a Doctor" feature on Spine-Health.

    Good luck and keep us posted.
  • Cathie is right about the interpretation of the MRI. Also most the time MRI's are done using a standard protocol where the image slices are done at a specific "thickness". It is not out of the range of possibilities that with the MRI you had done, that the problem was in an area that wasn't actually scanned. I've had that happen to me and it resulted in more surgery, but the problem was thankfully corrected.

    Stick to your guns and don't let these docs push you into giving up on finding an answer.

    John's Hopkins is a great institution and if your husband wants to set that up for you, you have nothing to lose.

  • When you are looking for a new specialist, look for someone who specializes in spinal reconstruction and/or failed back surgeries.

    Sometimes we have to do all the legwork ourselves and put all the pieces together on our own. I've been doing that for that past two years, and I finally feel like I know the source of my pain, and, probably, what to do about it. It should not be this difficult...but if I'd taken my surgeon's advice, I would be learning to live with the pain and the limitations. I was ranting earlier this morning that my degree is in studio art. I shouldn't have to spend all my time reading medical journals, reviewing all my medical records, imaging, etc., learning everything I can about lumbar nerve root issues so I can make suggestions to my surgeons!! :O

    It is possible that you may still recover from your surgery. You are not all that far out from your date of surgery. However, I don't quite understand why they won't order an EMG. Perhaps it has something to do with insurance, as I recall going through something similar. I just kept going back to my surgeon every month asking "what shall we try next?" Eventually he decided to order a new MRI, and a few months later, a new EMG. I'm not really a pest about it. I just make an appointment, go back and let them know I am NO BETTER than prior to my original fusion...and ask "what shall we do about it?"

    It seems to me you have two choices: return to the original surgeon and get him to work with you, or, get some other opinions and find a new doctor who will work with you.

    Good luck...and, don't give up! Sometimes it takes a great deal of perseverance.

    xx Gwennie
  • Cyndi,
    I had an MRI on my knee about 10 years ago and the report said there was no ACL tear but it was totally torn. My MRI on my back shows no spondylolithesis but I have/had it. So I certainly suggest more opinions. I had my ACL surgery at Johns Hopkins and was extemely happy. I tried to get in there about my back but couldn't get an appointment for quite a long time. If you are in the JHopkins area I would also suggest The Spine and Scoliosis Center at St. Joseph's in Baltimore/Towson. As a matter of fact, my surgeon has several articles here on SH. That is where I had my fusion w/ instrumentation at the end of July. I have been very impressed so far. If you would like more info about my ortho there, etc. PM me.
  • Sometimes we have so much pain we just go home and bear it. I agree with everyone else.....go back to your surgeon and let him know you will not live this way, help you find an answer and really go get some other opinions just so you know you are getting the right answers. I think JHopkins would be a great place to go for help! Good luck where ever you go!
    I hope you are reporting better news soon!

  • I went through something similar where I wasn't getting better after the fusion, was discharged from PT due to no progression, and my surgeon was waiting to see if in time things would turn around.

    I was sent for a new MRI when my pain grew even worse and it showed scar tissue growing on the nerve root and against the thecal sac at L4-S1. From there is was evident that I wasn't going to get better.

    My pain clinic is taking care of me through all this. If you do chose to go to one, it's not the end of the road- it's not over. They can still do things to help you and can diagnose anything else that might be going on. I'm waiting to have my pain pump surgery soon and it should give me better pain relief and help me function better.

    So don't give up, keep looking for another opinion and don't rule out pain mgt because they can also be of great help. Take care
  • What about a Discogram? I found that test MUCH more reliable than the EMG test I had done.

    It can pinpoint what disc/s the pain is coming from.

    If it's not a disc, then have you checked out the hip joint - I can't remember the medical terms, but after my accident (where I took heavy blow to the side of my hip) I wondered if my sciatica was coming from the sliding joint in there - it's a common issue after that kind of accident.

    Also, I wonder about post-pregnancy issues, my sister-in-law actually dislocated her hip in labor and didn't know for almost a year what the pain was from.

    Keep looking, don't give up.
  • all for posting and for all your ideas and well wishes! I have been so depressed that I wasn't on for a couple days an I'm sorry for that. If I'm not on sooner, I'll post after my NS visit on the 17th. I start homeschooling my kiddos Monday and don't know how crazy that will be!!!
    Thanks again!
    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
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