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What to expect. ..

I was diagnosed with spina bifida, degenerative disc disease, muscle spasms, and arthritis when I was 13 years old. My doctor didn't do any more investigation into my back pain and, for the most part, told me I was faking it. I went to two more doctors over the next two years, was told the same thing, got discouraged, gave up. I started working as a mechanic shortly after, worked until 2009 when the pain got to the point where I couldn't sit, stand, or lay down for more than 15 minutes at a time. And you can forget bending or lifting, most of which I got the guys in the shop to do.

Now I am 22, have a two year old, and I can't function. My legs are mostly weak and sometimes numb, the pain is indescribable. I visited a chiropractor about a year and a half ago and he confirmed all the diagnoses that I was given when I was 13. Now I'm off to an orthopedic surgeon on Monday.

What I'd like to know is: What can I expect from this initial appointment (he has my chiropractor's records), and what do I haveto do to get a doctor to understand the pain that I'm in? It's negatively affecting my marriage, my self esteem, life in general. I mentally can't afford for the doctor to tell me I'm full of it again.

I've been suffering from the stabbing, burning pains, urinary incontinence, numbness in my lady parts (which I just recently learned was a symptom), neck pain, etc. What do I need to tell this doctor for him to take me seriously?

Thanks in advance for any advice.


  • LizLiz Posts: 7,832
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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Helen3Helen3 Posts: 205
    edited 11/20/2013 - 8:52 AM
    They will do xray or MRI an see what's wrong
    . Just explain as much as the doc can stand.. an maybe that's what they will do.
  • thoracic spine painthoracic spine pain Posts: 566
    edited 12/07/2013 - 7:13 AM
    Take someone with you to verify your pain. Even if your husband has to take a day off it is worth it. Or you could take one of your family, I take my sister now. You can't express yourself when you are in pain. Take what you have written on Spine Health - you could post with more detail as it seems when they see you are actually asking for help from a site like this you are not doing it for fun - you are asking for support. It also saves you having to explain again. When they see the Spine Health logo they seem to take it more seriously. And make sure you reinforce urinary incontinence as this can be a serious condition.

    If you can do a pain diary every thirty minutes just saying activity then pain level 1- 10. It helps isolate the activities that cause you the most pain. I found some research which I posted somewhere on this site that said children are high on the list as not being by believed by Drs that they are in pain.

    I have also posted below a link to the Intractable pain Survival Manual which I wish I had read years ago when this started.


    I also believe in weight bearing instead of lying down MRI's which they have a lot in the US. Have posted a link below to show you the difference. There is also a lot on You Tube.
    EDIT to remove link

    Good luck with the specialist. A good site is the MD rating site so you can look him up and find out what other patients have written. I hope you have a great specialist and he finds the pain source and it is a positive experience for you. They most likely will send you for an MRI or bone scan or both. Please take someone with you, and the stuff you have written here, it really does help and is very important in how they react to you. I've tried it after years of frustration and it does seem to get you off to a better start so they take you seriously.

    Please get back to us and tell us how it went.
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    Post edited by Sandi
  • jessitaylorjessitaylor Posts: 40
    edited 11/20/2013 - 2:54 PM
    All of this is such wonderful advice. I forgot to mention earlier that my spina bifida is in my L5 and I have some sort of 'grade 4' subluxation in the lumbar region. This was determined by xray by the chiro. I'm going to start the pain diary first thing in the morning. I never knew you could get an MRI standing up. My husband will be coming with me.
    Thanks again. I will definitely come back with my experience and results.
  • I took a copy of this page to the doctor, along with support from my husband. We found a herniated disc and nerve root compression. Physical therapy starts tomorrow and then another evaluation in 6 weeks to decide if surgery is needed. They actually listened!
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