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Total Frustration

MomofthreeboysMMomofthreeboys Posts: 73
edited 06/11/2012 - 8:48 AM in Back Surgery and Neck Surgery
I'm feeling as if I'll never get better. I had my first surgery in Jan of 09 after trying PM injections and PT with no relief. I've progressively gotten worse. I've been told I have nerve damage in my legs but had a clean emg today. I was a nurse, I haven't been able to work since Oct 2008. I homeschool my 3 boys. I'm on worker's comp and ssdi. I feel useless, worthless. I walk with a cane and if I don't I have falls. What is wrong with me?! I'm so upset and angry. I see a psychiatrist and my pm monthly. My journey has been far from easy. I'm currently 8 weeks postop from having my hardware removed by my second surgeon. He said the screws were huge. I lost faith in my first surgeon after he pulled my husband aside and told him he was a good man for putting up with me! I have a wonderful PM doc but my body doesn't seem to be able to handle anything stronger than Vicoden and it barely touches my pain, which is in my thoracic, lumbar and both my legs. I'm so afraid the doctors are going to give up on me or not believe me now that I've had a normal emg. My last emg was abnormal and I don't understand how this one was normal. I feel like I'm really losing it. I want to just pretend I'm better, but I know it wouldn't work. I'd end up falling and getting hurt. I just don't know where to go from here. This journey has been too long and painful. Thank you for 'listening', I wish I was more elequent.
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

Surgery 10/4/10
Hardware removal

Spinal cord compression Thoracic spine


  • Cyndi,

    As a nurse (you, not me) I am sure you have seen patients respond in ways contrary to their medical issues, and or diagnostic tests? EMG's are only as good as the person giving them! I could go to 3 different ones, and though some may be the same, they "write" their reports differently! I've even gone so far as to make copies of the screen shots of the different tests, tape them side by side, and ask the wtf question!

    Remember too Cyndi, our diagnosis is not based on just one test, it is based on all of them, and then us the 'real' person with real issues. I hope that you will find that once the pieces are put together, a plan will come together that will work, or improve things for you. Please don't give up. I know it can be hard. Because of weak feelings in my thighs and falls, I started using a cane just under 2 months ago, and though at first I felt like all that saw me saw a weak person or whatever, I don't know them, don't care what they think - the cane gave me some of my activities back!

    If it helps? I decided to go back to "square one" on the doctor road. I am with my GP for all my medications (less chance of drug interactions) and she is doing my initial diagnostic tests (x-rays, MRI's), and then I will go back to my Neurologist with all of it, and then a new surgeon. My hubby and I talked about the "dump" feeling I got from my last appointment with my NS when the MRI's and EMG's showed multiple problems.

    I guess what I am suggesting, as I am finding this myself, is get new doctors so that a new set of eyes can look at all of this. Oh, and you are NOT useless or worthless, okay? *HUGZ*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Hi Cindi, your story sounds a lot like mine. Except mine involves more levels and longer time frame. There are days I just wish it would end, the pain and not being able to do what I want. But ya know then I see one of my grand kids and think just hang in there. I know I will never improve, like you I gave up on my surgeon. I rely on my PM doc to try and keep me comfortable. I have got several second opinions and they say the surgery is not revisable.
    So just remember hang in there...you sound much younger than me...maybe someday soon they will have a new procedure that can help you. Best of luck and may God Bless...
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