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Thread: Was your rehab experience lacking?

  1. #11
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    Originally posted by Lewis:

    My initial rehab in Boston was very mediocre. I did not feel they were knowledgeable in terms of handling a SCI, nor did they have the right equipment (which put more strain on uneducated staff and eventually Mom and Dad). When they were ready to send me home, so many questions were still unanswered.

    I was fortunate and was flown down to Atlanta to the Shepherd Center after enduring two months in Boston. Fortunately, I had a very positive experience once down there. They seemed to had/have all the answers. I like to refer to Shepherd as "Paradise" for the newly injured.

    -Lewis

  2. #12
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    My son injured May 2002...one month in Mass General Hosp...then two months in Shepherd Center in Atlanta..on the advise of the nurses in Mass General..I am so grateful that they strongly suggested it..Shepherd Center was the best place for my son...he learned to be so independent..they taught him bowel/bladder programs, transfers..he is now at project walk in california..living on his own at 20 years old..I truly believe he would not be as independent and strong if not for the care he received there...there is nothing comparable in boston

  3. #13
    Mine really sucked the first four months. After I got out, I went to another one and they were really good. It was at the VA hospital in san diego, ca. Fortunately i was in the military before, but unfortunately most people who get injured haven't been in. i feel very lucky.

    Even if your body cannot move, you can still think and meditate ~Dalai Lama~

  4. #14
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    After being discharged from hospital, i was sent home directly without going to rehab! The doctors didn't even mention rehab to me. It was only after about 4yrs post that i learned about rehab from this site. I then visisted a local rehab centre but, that didn't do me any good - i guess it was too late.

  5. #15
    thank you all for replying. throughout this whole sci ordeal when things have gone wrong concerning medical care I have often felt, "is it just me?" or "why do these things keep happening to me?". I've developed a distrust of doctors not because I'm paranoid or looking for the negative. Rather the opposite. I want some help but I've been burned too many times. It just seems that starting with rehab it's been mostly all bad. not knowing many people in my situation I've not really had anyone to compare my experiences with until now. It's unfortunate that so many of you can relate to what I'm talking about. the hospital I rehabed at is one of the 16 model hospitals in the US mentioned by ChrisD. I had thought maybe it was not at the time of my injury (1989) and so maybe that would explain the poor care, but I looked on their website and they've been one since 1972. sad.

    Now this is my next question. (hypothetical) This hospital is also a research hospital. If you'd received poor rehab, poor continuing care after rehab, and this hospital started at some point doing some trials that could possibly improve you, would you go there and participate? My last experience with them was 3 1/2 years ago and it was BAD. But, perhaps these trials would not involve the same doctors that treated you. Would you let the fact that this hospital even employes some incompetent doctors sway you? thanks for your input.

  6. #16

    new question (hypothetical) concerning research trials

    please see below. thanks

  7. #17
    I'm not in your shoes, but "they" don't seem to have a great track record. Having said that, I would make your decision independently of your prior experiences unless they are directly germane. BUT what could you gain (or lose) from having them do research with you, your body, and your time now, that you couldn't gain in a couple of years IF that research is successful. Just my opinion.
    Carl

  8. #18
    Junior Member parajudy's Avatar
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    I went to a top sci rehab center 5 days after my surgery.I had an anterior fusion with corpectomy and plate from T11 to L1.I had a T12 burst fracture and my back was crushed towards the front. I was told by my neurosurgeon to were tlso for 3 months. Don't even sit up in bed even a little without it. My dr. at rehab made me take it off after 20 days. I didn't want to and cried because I was in terrible pain and felt my pain would increase. I blew up from the waist down. Looked like fluid to me. They did every test and scanned my organs. Started treating me for HO. No one ever took an exray or visually looked at my back. I was in very aggressive therapy from the first week as I was physically strong and very determined to get home. Long story short I had a hardware failure that wasn't discovered until I went back to my neuro. 2 months after I left rehab. I was in constant intense pain from the time of my injury and just kept thinking I needed time to heal from surgey. Who ever heard of hardware failure? Maybe my rehab doc.? Well after another 11 hours of surgey anterior to take out hardware and posterior to put in rods T9 to L2 another 3 weeks in hospital from complications I am trying to get on with it. I have a terrible pelvic tilt and scoliosis from going so long with the hardware failure. The screws wre completely out on top of plate and my spine was very deformed due to no attachment. I guess besides just venting I want to make newly injured aware that even though they are in a top rehab facility follow your surgeons advice. You believe because you are at a sci rehab hospital they know everything and they don't. Judy

  9. #19
    ParaJudy
    I can't even imagine the pain and sensless mind thought you had to go through I had a similar fracture a t-12 burst towards the front was crushed thet took it out and threw it away I have the basket plate and 4 screw's for about 16 month's now. What is the tlso was it something you had to wear?? I had my surgery and they told me to get up I had to have help but went through about a week of rehab before I was told that I should be wearing a brace but I had to get up to put it on. I wore it most of the time for about a month but had to take it off to go to bed, it was like a big turtle shell. Then I wore it in the car but after about 2 month's I stopped wearing it altogather . They took part of my rib to use in the basket and so far it is doing ok. Did they go through your side to do the surgery?? I have more pain from that than the actual back pain
    Thank's
    Duge

  10. #20
    Junior Member parajudy's Avatar
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    Duge, We had the same surgery. They told me at rehab I was lucky I didn't have rods in my back as that surgey is more painful. I think thoracic surgery is brutal. I had it twice in four months plus rods at same time. They had to take out one of my ribs during the second surgery. I am glad you didn't have the same problem I had not wearing your brace. Thanks, Judy

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