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Was your rehab experience lacking?

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    #16
    new question (hypothetical) concerning research trials

    please see below. thanks

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      #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

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        #18
        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

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          #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

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            #20
            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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              #21
              Parajudy
              I am so sorry your's ended up the way it did! I can't even imagine what you went through having to have it the second time!!!! I luckily don't have the rod's in my back, but it scares me that in the future that I may end up having to have them.I got a few question's if you don't mind. Does your side bother you? mine does. I also have nevre ending pain in my feet which makes it painful for me to walk and almost impossible for me to go anywhere that I have to be on my feet for any length of time. and I also have it in my bottom, also my butt and the back of my thigh's I have no feeling of cold or anything like that. Do you have any kind of problem's like this? I would be interested if you have any. my burst had my spinal cord pinched off and they did not even find it for almost 2 full month's I think the one thing that hurt the most while I was in the hospital was when they removed the chest tube they had put in me.
              Thank's
              Duge

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                #22
                Well...after reading all these horror stories, I guess I was extremely lucky:

                I was taken to ER by ambulance with my spine bent forward at L1 on a 30 degree angle. I was examined, X-rayed and as soon as the L1 burst was discovered given high dose MP. The ER Doc consulted a neurosurgeon who wanted to wait for the cord swelling to go down then do anterior surgery to remove bone shards in cord, etc.

                Later that night I was examined by my orthopedic surgeon who looked at X-rays and said "wait? no way!...you're going to surgery tomorrow morning!"

                Both the neurosurgeon and orthopedic surgeon did my laminectomy, decompression, drained blood from cord, removed shards from cord, installed rods and fusion from L3-T9. They took the posterior approach (thankfully) and harvested bone from hip for fusion. After 6 1/2 hours of surgery I was sent to recovery.

                This regional medical center did not have a rehab but did have on-site PT's for in-patient treatment. I was fitted for the "turtleshell" and started wearing it 2 days later. 4 days after surgery the PT came in and made me stand with assistance. First day I took 2 steps, with PT's supporting each arm, second day 5 steps, etc. Within a week, I was walking with a walker around 4 sides of the hospital, each hall being about 100' long.

                I was then transferred to a different hospital closer to home to do rehab. Here they fitted me for a TLSO (brace) and began OT and PT. I learned how to do cathing, BP, etc. in OT and did ROM, light weights and walking/gait training at PT. I had to re-learn to walk and had bad foot-drop on left side. My surgery was on 12/2/01, transferred to rehab on 12/10 and was discharged on X-mas eve.

                All the above, at a cost over $225,000 was paid for by Medi-Cal (Calif's version of Medicaid).

                After in-patient PT/OT, while waiting for wife's insurance to take effect, I did nothing for 2 months but rest. Couldn't get out of bed without TLSO on.

                I then started PT 2 days a week and worked at home the other days for 3 months. In this cycle I got my gait back, learned to balance better and developed leg strength and abs/trunk muscles. This was through isometric exercizes for plegics and walking forward and backward in slow motion up and down a hospital hallway that had about a 5% grade on it.

                After finishing this PT cycle I was sent home to continue on my own. Near the end of my first year post I could walk a mile, 3 days a week, unassisted.

                I'm sorry to say that I have had some set-backs over the past year and now cannot go more than 4-5 blocks and need a cane to do that. I am currently working on a new exercize program with light free weights for upper body and an elliptical trainer for leg/hip/trunk strength and gait improvement. I hope to be able to get back to where I was in the first year post, but age has a way of robbing us of gains made.

                I feel extremely lucky to be walking, even if it is so poorly and with a cane. I also feel that it was the excellent surgeons, rehab doctors and PT's that got me out of that bed and on my feet early, that allowed me to walk again.

                Kap

                "It's not easy being green"

                [This message was edited by Kaprikorn1 on 01-30-04 at 08:56 PM.]
                accept no substitutes

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                  #23
                  Kap
                  Do you have any pain in your feet like mine feel's like they are asleep and burning most of the time??

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                    #24
                    Duge, I can't imagine the docs not finding your sci for 2 months. You must of been in terrible pain. I had a lot of bone in my cord also fractures at L1&2. I have a complete injury so am not walking. I do have a lot of burning in butt and feet. As far as my side I still have a lot of pain there. Can't even touch my side. The first incision goes from my backbone around my waist just about to belly button. The second is from shoulder blade down to L2 with another incision from t12 goes my left side and is about an inch from conecting with first incision. Looks like upside down y. The chest tube site got better after several months luckily they used the same spot for that the second time. I don't think the rod surgery is worse but pray you will never need this. You do loose mobility by having your back that rigid. Hope you can resolve your pain issues. I try to tell myself thank God I can feel something even if it is pain. I'm not saying it works just how I try to deal with it. Judy

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                      #25
                      Judy
                      So sorry your's is complete!!!!
                      well I was at a teaching hospital being treateed by mostly kid's in other word's I feel like I was a guine pig, the last day I was in rehab they sent me for a MRI why they did not do one in the hosp???? I can touch my sidee now my incesion goes from about 3 inches from my belly button to about half way around my back about 13" nothing like what you have been through So sorry that you have had to go through alll of that I can't even imagine how you felt and hope the pain goes away for you keep your head up ok!
                      Duge

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                        #26
                        Off topic

                        Duge and Parajudy, while fascinating, your discussion with each other about your injuries has gotten this topic going in a different direction than intended by Blundy. I would suggest starting a separate topic to discuss neuro deficits or PMing each other.

                        (KLD)
                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                          #27
                          My answer to your question would be yes! As a C2/C3 quad, I required one-on-one with my therapists and I rarely received that attention throughout my therapy sessions. My physical therapist did the best he could, but he usually had at least two patients and sometimes three that he had to work with. Occupational therapy was a joke until my last month when they brought in a young intern who was very attentive.

                          I was allowed 1.5 hours of physical therapy and 1.5 hours of occupational therapy Monday through Friday. The only reason I received that much was because my wife was there and made sure that I got there on time. If it was left up to the nurses and aides, I would have been late every day and received even less therapy. By the way, this was in a model SCI Center.

                          Insurance was another issue. They only allow 60 days per year in a rehab facility. I was lucky(!) enough to enter the hospital on November 1, 2001. That gave me 60 days in 2001 and 60 days in 2002. It would have been very difficult for me to come home after only 60 days.

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                            #28
                            It's disturbing that someone would receive poor care at any hospital/rehab. what is even more disturbing is that some of you, including myself, received poor care at either a model sci center, top sci rehab or, rehab that was highly recommended for sci. kind of makes it just seem like the luck of the draw, when it comes to proper care. i really hate that i've gotten this much response to this post. i figured it was probably just par for my course, considering my incredibly bad luck. i'm sorry so many others were treated poorly too, but i appreciate all of you sharing your experiences.

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                              #29
                              My rehab was lacking too.

                              It was at in patient rehab that I tore both of my rotator cuffs from overuse. I was in such severe pain everyday for a week, until I finally bitched enough to my doc's (intern) boss, he finally got someone to see me. I was so bad at that point, I could not lift either arm off the bed in the morning to get myself out of bed. I was told that I was "not applying myself." Bastards!

                              Long story short, got cortesone shots and healed up a bit, but both shoulders still ache when I use them a lot. This is tough cause I have to use my chair when I go longer distances rather than my two canes. But can't use the chair cause of the shoulders. Catch 22.

                              Knowing what I know now, I would have definately gone to the UW hospital, which is only a few minutes away for rehab. But then again, how would I have known to do that? When I was discharged, I had to go to a nursing home for a month and a half. I wasn't told I could go somewhere else besides Harborview, where I was initially taken. . .

                              Comment


                                #30
                                Blundy - I am glad, too, that you have found this site. It is never too late to learn more about caring for oneself as a person living with SCI. While many have indicated they did not have good experiences in rehab, so much has been learned and changed (I like to think for the better) in these past 15 years. I personally have been working in SCI for that length of time and I am well aware of the improvements in resources and technologies that are now available.

                                The most important thing one can do, who has sustained a SCI, is learn to be a good self health care advocate. By coming to this site, you are broadening your knowledge base, understanding and awareness daily. This is extremely valuable knowledge so that you can advocate for yourself.

                                I feel strongly that each of you should strive to obtain those services and access those technologies that will help you achieve increased independence, enable you to maintain the integrity of your bodies and ultimately avoid secondary complications. I would encourage you to not take "No" as answer until you have explored all options and have no other recourse. As you learn more, you can work in a positive way, to educate those persons/agencies/insurances, etc as to the medical necessity of your needs. Staying healthy is far less expensive, as a person with SCI, than the consequences of denied services, technologies and assistive devices, etc. CRF
                                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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