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Do you feel like these dr's just don't listen!

I’m finding myself in immense pain with nowhere to turn. I try everything and nothing helps. I’m a shell of who I used to be. The pain is relentless and I feel sometimes like I have no where to turn. I’m alone with this pain who wants to tell people everyday that your in pain 24 -7. You feel like a burden.Its not like I haven't tried to find help. I reach out to multiple dr's but I feel like they just don't listen to me. It's like they are in a hurry or they have they're own agenda's. I had a ACDF C4-5 5-6 with corpectomy back in May 2009. The first 4 mo were intense but I improved up to 18 mo then things went downhill from there. The pain is back worse than before the surgery and now I have severe pain in my left shoulder to the point I can't lift my arm and it radiates under my arm pit it burns intensely. My right shoulder hurts too but not as bad as my left. I had a shoulder MRI and there is nothing major wrong with my shoulder other than some arthritis. I'm so sick of pain meds and I'm not interested in getting stronger pain meds. My problems start because my surgeon closed his practice 18 mo after my surgery due to a medical condition. This has been a nightmare for me. I have gone to 4 surgeons and they all have something different to say. Honestly I feel like giving up at times I'm only 49 and I have been going through this since I was in my mid 20's.
I have had numerous injections because i will do anything to find relief. My frustration lies with the fact that I had a myelogram done back in Jan 2011 Then the next surgeon that was not the problem and that a screw could possibly be touching the spine. Well that surgeon ended up closing his practice for medical reasons. I saw someone else in that hospital and my records were never sent to him and he had the audacity to tell me all I had was " neck pain" . I wanted to punch the guy in the face. he wasted my time and it cost me $40 copay. I had no idea they didn't have my medical records or I never would have gone. I went to the next Surgeon he couldn't read the myleogram on his computer and promised to get back to me as soon as he could load it on his computer. I never heard from him. The next visit he doesn't remember telling me that and informs me that I will probably have to live with the pain and try spinal stimulator. What a waste of time. The first surgeon is 3 hours away from me so I haven't gone back to him but I later injured my lower back and was unable to travel in a car that long distance. I have had numerous MRI's they all say something different because there is a problem seeing around the hardware. I asked the pain mgmt dr to order a myelogram 3 mo he said I didn't need one since we are doing the injections. I asked him to review the previous myleogram. He said he would. Still nothing. Last week my pain was so bad I call the pain management dr to go in for trigger point injections I was just in the week before for followup appt. So when I was there I asked him to please ask my insurance again to authorize the discogram. He said I didnt need a discogram. They only do that if I would be doing surgery. I started to cry and told him I don't understand nobody knows what is wrong with me and I originally started coming to you for the discogram but my insurance denied it why can't we find out for sure what disc is the problem. He said no. Does anyone know what i can do. i'm so tired of living like this wondering what's wrong. How do I get my dr to order the discogram or a myleogram. Does anyone have a suggestion. I don't want anymore pain meds I want answers. This sucks when you just feel helpless!!! :(

Its not like I haven’t tried to find help. I reached out to multiple dr’s they don’t listen


  • jlrfryejjlrfrye ohioPosts: 1,110
    edited 12/23/2013 - 9:03 PM
    It took me a year to convince my Dr that something was wrog with me other then my spine issues. 8 surgeries to date so evey0ne just tells me to deal with it. I had enough and marched into my PCP office and told him there is soemthing wrong with me and im not leaving until you either out me in the hospital or start running test. He finally listened . I ended up having a spine infection that took a year of antibiotics and then surgery to repair all the damage done. Dont give up. sometimes you have to be pro-active in your care and do not take no for a answer. Dont suggest what test you want done, just tell them there is something worng and you and not leaving until a plan is in place. Be stern and dont take no for a answer
    good luck
  • I have similar but different problem. My surgeon's nurse does not relay my issues to him. I have been trying to get them to do something about my sciatica problem that started back up about six months after my fusion. She keeps telling me there is nothing that can be done. I even asked her if I can be referred to a PM doctor to see about a SCS. She told me no. I seen the surgeon for a post op visit a couple of weeks later, I asked him myself and he was all for it. Now I am fixing to have SCS trial. As for the sciatica problem, I have SI joint dysfunction. I had to go to my PCP to get help with that. He told me he is just going to have to send me back to the surgeon if PT does not work.

    Discectomies 05/08 and 04/11, fusions L4-5 Feb 9,2012 and L3-L4 June 28,2012, Staph infection washout 3/2/2012, Bulged L5-S1. SCS trial on January 17th, 2014, which was a success! Permanent SCS on February 20th.
  • woodstock69woodstock69 Posts: 5
    edited 01/24/2014 - 6:38 PM
    How did they find your spine infection??
  • thoracic spine painthoracic spine pain Posts: 566
    edited 01/27/2014 - 8:53 AM
  • jlrfryejjlrfrye ohioPosts: 1,110
    They found the infection with a nuclear bone scan, The strange thing about a spine infection is that it will only show up in 50% of blood test per my Dr. I knew something was wrong. All night long I would sweat something horrible, lost alot of weight in a very short time. I always felt like i had the flu along with a horrible back ache. All of these are signs of a spine infection. I was very lucky that mine did not spread past the lumbar, I have a friend that her sister went thru the same thing, no one would listen to her and the infection reached her brain before it was discovered. She spent 4 months in ICU and just this week was moved to a nursing home. You know when something is wrong so do not give up.
    good luck
  • How did you finally solve the infection? I've recently been treated for a Borrelia Hermsii infection & my new neurologist asked about a spinal tap to see if that's causing possibly causing the nerve pain.
  • jlrfryejjlrfrye ohioPosts: 1,110
    Followed by oral antibiotics. I was on antibiotics for almost a year before a surgeon would touch me
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