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Thread: Was your rehab experience lacking?

  1. #1

    Was your rehab experience lacking?

    I was injured almost 15 years ago at 18. looking back my rehab experience was less than favorable even though it was at a hospital that is supposedly one of the best in the US. Looking back and reading about the experiences of others, I feel I was not given the rehab I should have been given. For instance, I had never even heard about a standing frame until joining this site. I spent a lot of time filling out questionaires, and not much on actual therapy. I don't really remember now about what. "Small" things, like the hospital only had one brand of external catheter and it didn't work for me. They told me that was all they had and if it wouldn't stay on I'd just have to wear a diaper.

    I had yearly follow-up visits but was never given an MRI. My follow ups with my rehab doctor pretty much consisted of him asking me how I was doing. He never examined me, never touched me. I finally quit going because I felt it was a waste of my time.

    I was a kid when I got hurt and pretty much on my own. I didn't know what I should be getting and had no one to advocate on my behalf. I was there alone except for occassional visits. Reading various things as an adult, I saw I didn't get much of a rehab. I used to chalk it up to the times, but on this site I see messages by people who have been injured as long as me, and seemed to get a lot more. Maybe it was because I was a Medicaid patient. I just don't know. I was just wondering about the rehab experiences of others if you care to respond. thanks.

  2. #2
    another thing I'd like to add is that after I was discharged I constantly had a UTI. The hospital told me if I'd try an experimental drug they'd treat me and supply the med for free. Being a kid with no money and not able to work yet, that sounded good to me. A nurse came out once a month to take urine samples and bring my meds. I never got rid of the UTI and no other method was offered to treat it. I don't even remember now how I did get rid of it. I know I was on this med for months and months and doing everything I knew to do as far as staying hydrated and being anal rententive on sanitation as far as caths etc. Now that I'm an adult this just all seems really strange.

  3. #3
    YES my rehab was lacking the first time I was there the rehab did not even consist of any type rehab for spinal injuries!! they did not know I had it although I kept telling them my back hurt really bad. when it was found s month's after my injury I had spine surgery they sent me back to the same rehab and all they cared about was getting me walking and OUT of THERE!!!! Guess they knew they had screwed up too!! by the way it was just a general rehab not one for SCI

  4. #4
    Member kaye's Avatar
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    Isaac's rehab experience was a nightmare. After 1 week at intensive care and three days in pediatric ward we were sent to a rehab in Houston that was supposed to be good. All we have heard from numerous caretakers is that not much is known about pediatric sci. They gave him two hours a day for physical and occupational therapy. Consistantly that would be put postponed in place of discussing what color of shower chair we should get or some other "real important decision". Isaac is also on medicaid and we still struggle to find means to meet his need as the doctors we would like to see do not except it. His mom lost her job after the accident and her insurance. She has just went back to work but we haven't learned what kind of pre existing condition claus her new insurance will have. We are becoming very creative with at home therapy!

  5. #5
    Senior Member Jeff B's Avatar
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    My rehab experience was also lacking. I think that my PT was pretty good and quite knowledgeable, but my OT was simply terrible. Just after I was assigned to her she cut her hours way back to a point where she was almost never there. All we ever did together was fill out forms. All of my team meetings had to be set around her schedule, so they were never at a time when my family could make it.

    I also had accidents almost every day that I had a bowel program and they did nothing to solve the problem. They just said "It will all work you when you go home". They also used a type of condom catheter that would come off several times a day. And then the doctors and nurses would ask me why I was so depressed, like soiling myself on a regular basis wasn't something I should get upset about.

    While I was there they put me in a rickety old power chair that was way too small for me and did not allow me to weight shift in any way. As a result, I got a pressure sore on my butt that resulted me staying in the hospital, in bed, for months (which basically resulted in my bones and muscles wasting away) This was primarily because they only had one size of gauze for packing the wound, large, which meant that they kept opening it up again every day when they changed the dressing. When I left the hospital I was still not able to sit in my chair for more than a few hours per day. Luckily the homecare nurse that I had switched to a smaller size of gauze and it healed in a few weeks. The crazy thing about the pressure sore was that it took so long for them to do anything about it. It didn't look so bad from the outside but I was soaked with sweat 24 hours a day. I didn't know enough to understand what was going on then, but someone there should have figured out that something was wrong.

  6. #6
    Suspended Andy's Avatar
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    I had a mediocre rehab experience. Some of the staff there were pretty good, some of them you had to wonder how they got their job. Unfortunately I didnt fit into a pre-defined insurance company 'care plan' due to extensive being messed up, so I was shipped out of rehab too early.

  7. #7
    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

  8. #8
    Unfortunately approximately 85% of those with an sci never see or experience a model rehabilitation (there are 16 in the U.S.) center. Additionally, most resident docs have had on average 90 days of neuro trauma related experience. Doesn't bode well for most of the country.

    I think that our CC community numbers bear witness to this fact. Otherwise we would have 100,000 members and not 5,000. Simply, not many sci'd know about us / this resource. Shame. And a pathetic reflection, imo, of the medical community. If nothing else you would think that at the very least/minimum there would be communication among the industry so that when someone gets injured in podunk anytown that they could at least get information from their doctor about what's out there.

    It's getting better but still has a long way to go.

  9. #9
    Senior Member alan's Avatar
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    Mine could have been better. It would also have helped if they believed me when I said I had pain, instead of making me feel like I was faking (as soon as it first showed up, I told them. Not even a freaking aspirin! Sure, aspirin wouldn't have helped, but at least it would have given the message, "we'e trying to help.")

    Alan

    "Was it over when the Germans bombed Pearl Harbor?"

  10. #10
    I'd say my experience could have been worse. It wais the insurance companies fault though, they tried to push me through there as fast as possible.

    I stayed in ICU for 5 days, then went to a regular hospital room for another 5 days. They pushed me into the rehab way too soon. I still had tubes and wires stuck in me, and my bowels had stoped working. The first two weeks in rehab was spent trying to get the bowels working, while I had a tube in my nose sucking everything out of my stomach that I put in there.

    Finally after I got all the tubes and crap out, I had two weeks left to do rehab stuff before the insurance co (BCBS) kicked me out. I couldn't transfer or do any ADL stuff when my time was up, but thankfully voc rehab picked me up and gave me an extra two weeks. Those two weeks made a difference, but I feel I still didn't know enough when I left.

    _____
    Learn from the mistakes of others, you won't live long enough to make all of them yourself.

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