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Steroid injections and EDS

I have EDS hyper mobility and possibly other CTD and my new pain management Dr is pushing very hard for me to get a injection through my Tait bone and putting a large amount of steroids in. I've been told to stay away from surgeries and steroids can anyone give me some leads here on what to do. I've had Ober 16 injections over 4 years and 4 surgeries on my lower back. In the past the inject seemed to make things worse but this Dr didn't want room hear it I was told come back in 2 wks and we will set a date. 
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Comments

  • jimandjrjimandjr Dallas TXPosts: 745
    I trust my PM and he has done countless procedures on me. Steroid injections, nerve blocks and ablations. All worked great. 
  • This is a new Dr and what got me the most is they wanted all my records on my back and past pain management treatments. As he was walking in he said oh I need to look at those images from after surgery and then walks in I tell him I have EDS he says ok and we talked and he's looking at me funny at times and then says wow well I haven't actually read the notes they sent I just skimmed a few pages and I'm going off that and we are going to do this even though you have had many done and they didn't work. 
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  • jimandjrjimandjr Dallas TXPosts: 745
    Why do you want to stay away from surgeries and steroids? Both treat back issues/pain. 
  • Injections do not work with me I have had multiple done over the past 4 years none of them have work or if worked it did it was a wk of increased pain a few days I'm talking 3 or 4 days max of a little relief and then back to where I was before. Surgeries I've had 4 and they have resulted in nerve damage and more pain. Granted 1 surgery that was the biggest cause of pain was falsely pitched to me the Dr kinda gave me the song and dance of how this surgery was the latest and greatest and that I had these problems in my back which turns out I didn't he was just running a surgery mill basically. Also I have EDS which I've read conflicting terms on with injections causing a break down in collagen which people with connective tissue disorders don't need any more help with.
  • jimandjrjimandjr Dallas TXPosts: 745
    Sorry for your failed surgeries. I was stuck in bed before all 3 of my surgeries. They got me vertical. If you're already vertical maybe u don't need surgery. GLTU
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  • Right now I'm not up much due to a CSF leak that keeps me flat alot when I'm up the pain in my back and head get to be to much to the point if I push it I end up in the er from pain. Surgery isn't on the table right now due to the cause of my pain is more nerve damage related. Having my spinal cord compressed for a year plus didn't do me any good. I'm just hoping there is something out there that isn't opioid drug and isn't injection. We have tried the spinal cord stimulator and it didn't help much at all. I feel like I may have to bow down and either just deal with the pain or get the injections and hope to God that something changes and it helps because I'm on my last leg with my GP doing my pain management with meds due to clinic not allowing it anymore. 
  • jimandjrjimandjr Dallas TXPosts: 745
    Wow, You've been through a lot. I tend to trust my docs. If they say injections, that's what I do. Nerve damage? That sucks. 
  • I don't trust many Dr's anymore after a lot of what I have been through. Had Dr's lay out we can do this or that to fix you then turn around and say but we are going to do injections instead even though they haven't worked. My problem with injections is they make a boat load on them and lots of Dr's put that money over what will be best for you. As for the nerve damage it does suck again had a Dr that put money over what was right. After speaking with several attorneys that are suing him for malpractice it's come to light he lied to people saying you have whatever and pushed surgery promising that it was 99% effective with less then 1% chance of infection and less the 1% of it failing. He made claims he had done thousands of these surgeries and had less then 10 fail. It was a mess. 
  • jimandjrjimandjr Dallas TXPosts: 745
    Docs/Hospitals make lots of money on me. I don't look at the dollars when I need help. I just go for it. My SCS bill from the hospital was 118k. Well worth it. My injections are each over 15k. Although temporary, I do them. Sounds like you need new docs. I've had the same ortho since 2012 and the same PM since 2014. I was stuck in bed in March 2012. After an ADR and ACDF and countless day surgeries, I can sit, stand, and walk around. It's sad you don't trust your doc. Hope u can find a new one soon. 
  • Well after calling the office and laying it out that I've had so many injections and other things that failed plus money issues which I wish I could say wasn't a issue but it is and Dr's here have no issues reporting you to collections if you can't pay them fast enough or won't see you until you pay bills in full. I got a new PA to see me. I see no point in waiting money if I can avoid it and after the nurse was rude to me when I called and said this nicely the gal that called back was nice and understanding. The PA that took me on looked at my notes and said she agreed  for now that I needed other treatment.I try my best to trust Dr's but it's hard after they promise you through moon and then mess you up 
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