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You've got to be kidding me...

ThanksKarmaTThanksKarma Posts: 17
edited 06/11/2012 - 8:55 AM in Lower Back Pain
I have had back issues for about 5 years (I'm 22 now). I have had two failed back surgeries and many, many epidurals. I suffer from debilitating pain every single day with my spine getting worse with every MRI. I have been progressively getting frustrated with my previous surgeon and pain specialist so I decided to switch both of them. The surgeon informed me that I had rotary scoliosis (11 degrees) and the pain management doctor found that I have a small mass (in the report back in 2009) and metal fragments left from the surgey (in 2010 report). Not one of my previous physicians informed me of any of this and I am sure this could be the source of the pain. I now have no reflex on my bad leg and the ONLY option I am offered is pain medicine and to wait until I'm in my 50s. WTF...I can't do that, I have to make a living and surely they won't pay my rent over making the car payment on their hubbys second sports car. Any advice? What would you do?
Fall 7 times, stand up 8...


  • Sorry to hear you are getting such a response! My 'journey' started at 21 after crashing a helicopter, so I get where you are at!

    My thoughts? I would find either and Orthopedist or Neurologist that specializes in the spine that *will* look at your spine, and not your age. Sometimes being young (I am almost 50), they blow you off short of trauma.

    Some of us show no symptoms with huge issues, others little problems (me) are in megga pain and function mode. The key is now a days... we have to be our own advocate many times and seek out new doctors to "look" at us. I hope you have answers soon.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • One thing I have always done is pick up copies of my medical records sense I started this journey. In one instance I thought the surgeon was not hearing me, but it turned out the other way around, I was not hearing that he said I had permanent nerve damage. Had I read those records it could have saved me a lot of misery. But also I think they help us understand what is going on. Your records should state where the metal is and if it is in fact hurting anything. What is the metal from? Also depending on the growth and the location would depend if it is causing any of your issues. I know it freaks you out to know that is going on and you don't know about it. I have a similar issues with some on some vertebras, while yes they cause pain, they are not the primary reason for all the pain I am in daily.

    The doctors whom told you of this stuff did the sit down and explain to you why it is not a surgical reason? Did they offer to do any other test to find the pain generators? I think finding the specific reason for the pain is so important even if they can only treat you with meds, but then they know the exact meds that should work on that type of pain. For example is your pain still mechanical or is it neuropathic in nature?

    I am not sure how many times you met with these doctors but often times it takes more than one appointment to get a good plan in place and you have to build relationships with these doctors, which makes changing doctors even harder as you start from the beginning. Hopefully they will come up with some answers to help you out and get the pain under control.
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  • Sorry that your pain has led you here, but you are among friends who understand the struggles and frustrations of chronic spine pain.

    Have either of your surgeries been to treat the scoliosis?

    What do they propose to do when you are in your 50s?
    Did they say why they can't do that treatment now, so you can enjoy being young?!

    You need some help to cope with the pain you are in. Do they have a plan for you? I really hope that you will find someone who will be able to help you.

    In the meantime, welcome to our Spiney Group. We understand and will be here to support you. :H

  • HI,
    I can't believe they are telling you to wait until your in your 50'S!!! You are young and have a life to live, and I totally agree with what the others have said about getting your records, finding a better dr. or having the one you have, fully explain all of this to you, and have a plan of action. There has to be a way to address your situation and the pain should be managed alot better than it is... Do you have a primary dr you could consult with or maybe get a referal to a good ortho or neurosurgeon?
    As the others have said, welcome to spine health where you can ask questions, whine if you need to, look up medical information and have all these people to support you! I hope you find some relief and have a plan of action in the very near future! Let us know how you are doing...
  • I went to the doctor and asked a lot of quesions. I got all the medical records a few days before my appointment. I was reading about the rotary scoliosis and that was discovered in 2008 whith nobody telling me anything. As for the the metal fragments, I found out that they were left there after my first surgery and that they could be contributing to to sharp pain and discomfort along with the mass.

    The doctor I went to yesterdasy was very nice but of course he made it out like it was no big deal and that the two herniations on my t-11/t-12 and the cervical area wich is causing my to have numbness in my fingers. I have to have an MRI and was supposed to go today but I couldn't turn my head enough to get there. I will get my friend to get me there on Friday.

    As for them wanting to make me wait until I'm 50, they keep saying that that I'm so young and they don't want to put me throught the mental anguish. Uhh....I'm sufferring enough now. Imagine going throught 28 years of this. It's hard to find a physician that can open his ears and heart.

    I guess I will be relying on you guys for ranting and raving and keeping you updated as to what is goig on seeing as I have a doctors appointment later on today to see what we can do. Thanks for listening guys. I will keep you posted.
    -Laura (LoLo)
    Fall 7 times, stand up 8...
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  • I have just got back from a wonderful holiday on a Spanish island. :D

    We are here to support you through and won't get tired of listening to ranting and raving, as long as you will accept our too! :)

    How did your appointment on 10th August go?

    >:D< >:D< >:D<
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