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Need some advice

I had a herniated disc at C6-C7 that I had ACDF for in January of 2014. Went back to work after 5 weeks. I worked a desk job. Started to have bad burning and stabbing pain in my shoulder blade along with neck pain. Went to PT. No drugs. Things got worse. About 3-4 months post surgery I couldn't continue to work. Spine surgeon took xrays said I was not healing, fusing. Took CT scan. Said everything was fine it was just healing slow. He said to come back 1 year post op and did not do anything for me or keep me out of work. I was also having bad shoulder pain and armpit pain which I had for years before the surgery but all shoulder drs told me nothing wrong. Went to another shoulder dr for 3rd shoulder opinion and he took MRI and he said I had a torn labrum. I asked Spine DR if I could/should have shoulder surgery and he said there was no reason that I couldn't. So I did because I was desperate to keep my job and get better and no one was doing anything for me and I thought maybe it was that because I really hurt my shoulder years ago. Had surgery on shoulder in June 2014 and Dr said I had what he would classify as major tissue damage in my shoulder and a cyst the size of a marble which was causing the tight bicep tendon I felt. It was a blankhart tear from about the 3 o clock position to the 6-7 o clock position. Insurance wouldn't pay for PT because I used all my visits after my neck surgery. I went once I week for 6 weeks. From there everything got worse. Shoulder DR sent me to a physiatrist(sp) who did x rays EMG and MRI. Said Absolutely nothing wrong with me or my neck or shoulder and that I just had minor residual nerve pain to my long thoracic nerve. My shoulder pain, shoulder blade pain and neck pain was so bad it hurt to take a deep breath. Could not support more than a few pounds on my left side(effected side) without it pulling heavy on my neck and he told me a I need a psychologist that there was nothing anyone could do for me medically. And he took my disability away on my first visit without even talking to me about it. My job had already let me go because I was out for over 6 months total and was no longer protected by FMLA. So no further disability coverage now and I could not afford to see another doctor or pay my cobra premiums. I plead and plead with this doctor but the more I complained the more he resisted doing anything for me.

So I tried to "push" through it by exercising and it would just get worse. Im talking very light PT stuff. I eventually reached out to my father who paid for me to see another doctor. Immediately the doctor took xrays and said my neck did not fuse. This was over a year after my neck surgery. Ive since been to pain management and had 4 facet injections which made the neck stiffness and burning in my shoulder blade and ribs and lat. I had a shoulder injection last which oddly seemed to help a little but nothing that changed the game. I have been offered another surgery both posterior fusion or anterior redo with marrow from hip and bone growth stim but neither are a sure thing to fix my burning pain that stops me from exercising at all or even going out socially and just typing this is killing me. There is no way I can work my desk job like this. I was an insurance adjuster and would spend 10 hours a day at a desk typing. I almost lost my job for performance reasons due to the pain before surgery, which was why I did it.

I have lost everything and don't know what to do. I'm only 34 and would have considered myself in the top 5% of physical fitness before all this. I used to be a top performer at my job and any job I ever had. I am a single guy who lives alone and my job/career and my fitness meant everything to me. I have lost my savings, 401k, insurances, girlfriend, friends. No one my age even understands. They all think I'm a wuss

Laying down hurts. I dont sleep well at all and have developed a horrible sleep pattern I have lost over 35 lbs and needless to say my mental state is on a heavy downward slope. I see no hope of ever feeling normal again ive felt bad for so long. Im just sick and tired of feeling sick and tired all day every single day. Everything I do to try and get better or feel better is futile. Ive never felt more defeated and ive overcome some serious stuff in my short life but this has got me licked.

I think the worse part is you wait months to see the dr and they see you for 5 min and cant tell you anything for sure. I don't even think they fully understand my symptoms etc. No one will say I cant work but I cant even do anything. I know if they felt like this they wouldnt be sitting there talking to me. I feel doomed to this. I think I internalize the pain because ive learned to deal with so much in my life ,working out was my outlet, but that doesn't mean nothings wrong. It take all I have to get through every day doing nothing at home. I used to be a happy charismatic person and I am full of pain and anger at this point.

This experience has changed me forever and I will never see the world the same way. Like why do I deserve to lose everything I worked for. I understand if I cant get better. Stuff happens to people. My mother lived with leukemia in remission for 20 years and I never heard her complain. But to say these nothing going on and to take my benefits away has really screwed me in addition to everything else. Ive tried to get back on disability with an appeal but no luck. I already feel so guilty about not working because of my strong work ethic and if I could I would.

Does anyone have any advice? I know trying to achieve fusion is probably my only option but what if it doesn't help or makes me worse. I just don't know what to do and I am literally about to lose my apartment and have to move back in with my 70 year old father.

I go back to the new spine dr in June.

Sorry this was so long and if you made it to the bottom thanks for taking the time to read.


  • Motor1MMotor1 Pittsburgh, PaPosts: 552
    edited 04/30/2015 - 3:41 AM
    First I want to say wow! I thought I was reading one of my own posts! I was injured at work in March 2013. I had immediate neck & left shoulder pain. All the doctors told me that my shoulder pain was coming from my neck. I ended up having ACDF on C4-5. When I kept complaining to my surgeon that all my symptoms from presurgery were still there, he dismissed me & told my work that I could go back to work on light duty. I was only allowed to answer the phones. My real job was a Hospice Aide. I dragged myself to that office for months to just answer the phone. After a few months, I called surgeon again & his office told me I was no longer his patient. Said his job was only to do the surgery? So I once again found another doctor. He took X-rays & told me my neck didn't fuse. He had me wear the spinal cord bone growth stimulator.it didn't work for me. He also insisted that my shoulder pain was coming from my neck but he did refer me to a shoulder doctor. I went for an mri & that doctor told me there was nothing wrong according to mri. He did give me a cortisone injection. That didn't help at all. I forgot to add that I did have to hire an attorney because my work wasn't paying me properly. My work ended up laying me off & eliminating my position so my attorney got me on full paid benefits. So a year later, I had posterior cervical fusion surgery. My symptoms in my neck got a little better. I didn't have that instability but I had much more nerve pain & of course, shoulder pain. The doctor had no answers to my questions so he referred me to a pain doctor. I went through more physical therapy & more injections. Nothing helped.
    My attorney suggested I go to a new shoulder doctor. This new doctor looked at my mri & read me the report form it. It clearly states I have issues & a possible labral tear? So now tomorrow(Friday) I go for a mri/arthrogram. He told me I probably will need surgery. I'm not happy about that at all. If there really was an issue with it 2 years ago, I could've had it fixed by now!
    I think in your case, I would start with consulting with an attorney? I believe they don't charge for initial consultation? Maybe they can get you back on temporary disability & you can get some money coming in. My benefits don't cover my full pay, but it's better than nothing right?
    Please don't give up! You know what's not right with your body. Keep looking for answers.
    I am sorry you are going through this. Read some stories on this site. You will understand that you're not alone.
  • jsendrejjsendre Posts: 4
    edited 04/30/2015 - 7:10 AM
    Damn man sorry to hear about your problems. All I can say is this all sucks. Ive never felt like a bigger POS in my life. I guess I just don't understand the huge disconnect between what my doctors think I can do and what I actually can. Its one thing to go to an doctor visit when that the only thing you have to do the entire day, its another to work effectively and consistently enough to hold a job.

    I had a job and I was failing at it due to the pain which led to surgery. So I had surgery and im in more pain and its just tough. I guess that's life.

    Good luck with the shoulder surgery. Hope it helps you out. Get plenty of PT after. I really think that's where most of my pain is coming from but like you , the doctors just wont look past the neck. I cant wait to see what pain management say when I tell them neck shots made my neck more stiff and the burning worse and the shoulder shot actually helped a little. It s almost like my shoulder blasé is jammed up in my armpit and is stretching the trap and lat muscle making them weak causing my burning pain. At least that's how it feels to me. but that theory always gets immediately dismissed by the drs. At first my shoulder dr said it was possible, thats why I had surgery on shoulder, but after pain persisted and I was losing my job he was concerned and sent me to the dr that took everything away and would not consider it as the source of my pain. From there the shoulder has just been dismissed other than the shot.

    If this was my shoulder the whole time ill be really mad.

    Honestly at this point ive given up on Disability etc. I have realized I have to do this alone. You re not a priority to anyone but yourself in this world.
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