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Need friends & advice please.

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  • Need friends & advice please.

    Hello im new, im 32 (33 in june) and have had a bad time with my scoliosis since I was young.
    My 1st doctor ignored it, then I had my 3 children & it went worse. They decided to operate in 2000, I had 2 titanium rods, disks removed, fusion, ribs removed and some nerves took out, it was done in 2 parts.
    1st op went ok, 2nd one I was in pain, then in 2001 they discovered the rods had broke away! We already knew coz we could see the lumps! They took me in for op no3 in 2002 and just cut the lumps off!
    Now its come away more and my x-rays took in october '03 show its broke away completely! Thay held an emergancy x-ray meeting (as my consultant was busy-I have seen every one they've got!) they wanted to do surgery & now they've just put me back on observation & my appointments august!
    My GP has wrote to them (im on Diazepam, Dihydrocodine & alternating pethadine & morphine) im in agony. I cannot move my right shoulder, I cannot sleep.
    Im lucky im living with my parents as they are helping me with my children (they're teenagers now). Ive been down the legal road & I had a case to sue for negligance but they where nasty at hospital after I complained-so I gave up on it.
    Now the surgeon has operated on a girl I know & she nearly died as he made a major mistake & she nearly died! She's only 16 (im going to get her to sign up to this board-she's asked me do I know anywhere & now ive found this board I do).
    Just some help, advice or friendship from someone who understands would be great.

  • #2
    Hi, I'm new to the board also. Currently I'm 34, I had my first surgery in '77 at the age of seven and then another surgery in "84 at the age of 14. That's when I had a Harrington rod placed. I also had ribs removed...that was during my first surgery. I seem to have done well with only minor pain now and then until just in the last few weeks. Now I have constant pain in my lower back. I just saw a spinal Dr this past Monday and had an MRI that afternoon. The results aren't in yet, but the Dr. seems pretty certain that I have a disc problem. I'm not really sure what's in my future. The doctor mentioned injections and possibly even another surgery. I'm just looking for advice also.

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    • #3
      I read your posting the other night and it brought me to tears. I was weeping; I could feel your pain and despair. I wanted to respond that night but didn't know what to write. In fact, I still don't know what I can say that could help you. I noticed that you posted it quite some time ago so I don't even know if you'll see this. The ONLY thing you can do now is pull together every bit of strength in your heart and soul and seek out as much help as possible. You are fortunate your parents have taken you in. Can they help you find better doctors? Can you think of other friends that know other hosipitals that would hear your story and help you? You need to use every angle to help yourself by asking others to help you get the PROPER CARE that you DESERVE as a HUMAN BEING. You live in the UK, not in a 3rd world country!
      My pain seems so trivial after hearing your position.
      Write me back. I'll check this site every so often.
      Kristi
      Last edited by kristiz; 05-12-2004, 05:26 PM.

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      • #4
        Mopey, as much pain as you have right now try to remember that you can get through this! Going to another surgeon would be good if that is possible. It is obvious that something must be done! Many people here know and understand your frustration and pain. If you don't mind I'm going to put you on my prayer list. God Bless!

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