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  • Accomodations for home

    Wow! I've been reading the posts for past few weeks and have learned so much. My daughter, 15, is having posterior fusion surgery June 7. She was diagnosed with scoliosis at age 10 and wore a Milwaukee brace faithfully for 4 years. Her back continues to worsen. Currently, she has a 39 thoracic curve and a 50 degree lumbar curve. It has progressed 5 degrees steadily the past two years.

    So many questions, so many concerns. First, did anyone rent or buy a hospital bed for home use? I've read about raised toilet seats. Would you recommend getting one? Any other suggestions to help make her more comfortable is greatly apprecited!

    Thanks!

  • #2
    Hi TX Mom

    Here is part of a reply that I gave in the surgery post to a mum whose daughter who has just been through surgery:

    When your in the hospital there will be an OT (occupational therapist) come in and go through OT stuff, mainly stuff about in the home. When I got home from hospital I had problems standing in the shower and I was also "worried" that I could slip and fall over. I would highly, highly recommend hiring / borrowing from the hospital / local hospital etc a shower chair and a raised toilet frame (it was hard to bend down low onto the normal toilet. As for needing help in the shower, I did have someone watch me for a few days getting in and out of the shower just in case I became unsteady, as you are still very tired after surgery and when you come home. Something I would also GREATLY suggest, is replacing the shower head with one of the adjustable ones (they aren't particularly expensive) they are like the ones in most hospitals. The adjustable ones are the ones that a long "cord" is in where the water comes out, at the end of the cord is the shower head and the whole thing can be taken off and hand held whilst you shower. I highly suggest it because even though Amber would probably need it to be taken off for her, she could sit in the shower chair / stool / some people have also used eskies to sit on but I think a shower chair is safer and wash herself. She would probably need someone to help her with washing her back and washing her hair (it is pretty sore to lift your arms up above your head)


    I don't know what the system is like in America, but here in Western Australia (Australia) you are able to hire / borrow equipmtment such as raised toilets seat frames from the hospital or hire them from "invalid aids" equipments places such as the Red Cross. I don't think hiring a hospital bed is greatly necessarily as your daughter would find her own bed a lot more comfortable (unless it is a water bed), she might need a different pillow under her head (if hers is really squishy) and probably some pillows as support around her when she comes home from surgery. I however would highly recommend getting hold of a toilet frame (the raised one that goes over the toilet). After surgery it is pretty hard to get down to a normal toilet, because you are pretty stiff and sore and they usually have arms on them which gives you extra support/security when getting up and off. We borrowed from the hospital at first and continued to use it for a long time (2 years- it was a public hospital and in Western Australia they do not charge for loans like these) and then dad replaced the bowl part of the toilet with one that is "disabled height" which is like still having the toilet frame. Another option might be to install rails on either side of the toilet.

    Alison

    Ps In case youre curious I am fused from T2 to T 11 and my curves were before surgery over 60 degrees the top curve and just below 60 to bottom curve and now they are only a couple of degrees below that (about 59 top and 58 bottom approx)

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    • #3
      Wow, your daughter's situation sounds a lot like mine - braced for four years, posterior spinal fusion, curve around 50. The only difference is that I had single curve, so I imagine that it was easier for me to move around post surgery than it will be for her. I also had five ribs removed.

      I agree that a hospital bed seems unnecessary, but I would recommend buying lumbar pillows, or rolling up blankets to create long, cylindrical pillows that support the body (if you daughter wants to lie on her side). I used these all the time in the hospital and at home.

      As for the toilet, I think she should be fine as long as there is some sort of ledge or bar to hold on to. I also recommend a "body pillow," (long and flat, about the width of the body) to place on chairs or in the car for extra support and "shock absorption."

      Good luck!
      Charlotte

      48 degree upper curve
      L2 to T4
      Braced for 4 years
      Surgery 2/4/04

      Comment


      • #4
        more questions

        Thank you for your responses. How is your flexibility? Is it true that week #3 you start to feel somewhat better? How soon after surgery did you want visitors?

        Comment


        • #5
          More for TX Mom

          Hi! I'm your neighbor in Arizona! Ha!

          I will keep your daughter in my mind and say some prayers for both of you! Keep her strong!

          I completely disagree with a hosital type of bed and also with the toilet seat you were speaking of. I think it's important to make it feel as "normal" and home-like as possible when she gets home. It's also healthy to get right into the normality of needing to function with the things around you. It's more of a worry to shower and be in a shower after surgery than anything else, I'd say. I completely agree with the body pillow idea, too! One for the car and at least one for the bed! After surgery, the car rides are traumatic! You feel every tiny bump is a huge bump! Also, in bed you really need pillows everywhere and it helps to have the one long one! I loved that gift when I had my surgery!

          Feel free to ask questions on here! People answer and are honest. It's important for there to be few surprises! I think this site is a real blessing for the simple fact that everyone cares because we all have scoliosis in common!

          I had my surgery 12 years ago when I was 15. There is much to know and to be prepared for as a parent. Also, be sure your daughter is able to speak to someone that has been through it all. I had a couple of people write me letters and give me stregth through just stating that they went through it and are very happy today and are doing well!

          Much luck...please write if you need anything~
          Andrea

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          • #6
            oh yes!

            I meant to add that I do think it takes much longer than 3 weeks to feel well afterwards. I was told by my doctor 2 weeks and all kinds of jabber.. It took at least 2 months for me to feel like moving and a bit healed. Of course, everyone is different, yet...honestly I do think doctors tell you much less time than what is realistic!

            Flexability also takes much time. It takes your body a long time to heal after such a major operation. It does happen and once it does your daughter will feel better and start a whole new process and way of walking, moving, etc. It will be fine! I just think it does take some time!
            Andrea

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            • #7
              I actually disagree with AndreaElle - I felt fairly normal after three weeks. I didn't have much endurance, but I felt like I moved like I used to (except for picking things up). Flexibility takes a lot longer to improve. I am almost at four months, and I'm really trying to start jogging and get back in shape. My flexibility is nowhere close to where it used to be!

              I should mention though that I only had a single upper fusion, and I know returning to activity is more difficult for double fusion patients because they have to deal with their back and hips healing. Good luck.
              Charlotte

              48 degree upper curve
              L2 to T4
              Braced for 4 years
              Surgery 2/4/04

              Comment


              • #8
                jogging???

                My surgeon advised against jogging to avoid dislodging the hardware-especially before the fusion is solid. Personally I am not sure if it would ever be advisable because many discs, which are the spine's shock absorbers, can be removed during scoliosis surgery. I suggest asking before engaging in any sport-he knows the extent of your particular case.

                I was allowed to walk as much as tolerated and 11 months after surgery I was hiking in the Alps.
                Karen
                Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
                Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

                Comment


                • #9
                  Don't worry Karen - my doctor approved me for jogging, swimming, and biking at three months. I trust him completely - he is a well-known back specialist. Some people even move to this area just to seek his treatment.

                  I mentioned this before, but I only had a single fusion, so your limitations may be different if you had a double fusion or a larger curve.

                  Thank you for your concern!
                  Charlotte

                  48 degree upper curve
                  L2 to T4
                  Braced for 4 years
                  Surgery 2/4/04

                  Comment

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