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  • New T12/L1 Complete Injury

    My 22 year old son was injured in an ATV accident on 9-1-05. We are told that he is a T12/ L1 Complete.

    I understand most of what the Dr's have been telling us about the injury itself, but they aren't telling us much about the road ahead. I have been doing as much research as possible on the internet and reserved several books from our Public Library, but would really like to hear what others have to offer in the form of advice.

    Specifically I am interested in information about what to expect in the rehab facility and after he is released from rehab. He will be staying with my husband and me and I will be his caregiver if needed.

    I am also interested in getting information about equipment that we may need to have when he comes home to make things easier for everyone. Since he had no health insurance when the accident happened, we applied for Medicaid (were told the only way the rehab would accept him is if there was a pending Medicaid application). I am not sure what Medicaid will cover as far as equipment.

    We are in the Cleveland, Ohio area if that matters.

    Thanks in advance for your help.


  • #2
    welcome to the board, I only wish the circumstances were different.

    most people are here on weekdays, so dont be discouraged by a lack of reply right away.

    I am also SCI, but my injuries are degenerative. My path through rehab and treatments are not the standard for SCI folks.

    There are a lot of us here that are T12-L1. If you click on search (in the blue bar not the google one) it will pull up a lot of previous threads that may help you. I typed in T12 complete and pulled up 200 forums.

    Here's a thread that is for T12s that may give you some insight also:


    • #3
      Hi David's Mom....sorry about the circumstances which bring you here...

      I am an incomplete t12. I was 18, had just graduated from high school and moved out on my own 6 mos earlier. I shattered my vertebre falling off an innertube while going down a snow slope. That was back in 1982.

      While every injury is different the chances are good that your son will be able to develop an independent and satisfying life. That I can assure you from experience. In this time of discovery and experimentation in spinal cord regeneration he may have a lot of options that were not available in 1982.

      I'm expecting you'll get lots of great advise from caregivers here but I just wanted to give you what I know from my experience as the SCI, going through rehab and initially moving back home with my mom.

      There were lots of emotions running rampant in everybody (myself, my younger siblings, my single mother and father). It was really helpful for councilors to be involved. Take care of yourself so you can be there for your son AND yourself. I'm sure this group will also be able to steer you toward some SCI caregiver support systems (as well as carecure here).

      While in rehab I was given most of the skills I still use today. They will help him strengthen his body and figure out what he can do without adaptive equipment and what adaptive equipment he will need to take care of himself outside of the hospital. Back in the good old days Medicaid did pay for all of the equipment I needed to become independent...I don't think they do anymore. If you belong to a church maybe you could get some support from them (fundraisng for equipment and/or home modifications needed for your son to come home).

      I might be wrong but I think I heard that Medicaid does pay for caregiving services. Have a talk with your son before you all move in together again. One of the weirdest things for my mom and I was a bowl and bladder care. I wish I would have had a caregiver for that because it was weird to have the person who potty trained me now taking care of my bowl and bladder again....she has admitted that it was very weird for her too and the help of a caregiver may have helped us focus on other things. Eventually I became totally independent there too.

      I was in the hospital for a month, moved to rehab for three months of medical care, moved to my mom's house while I continued three months of outpatient care at the rehab center. The moment I was "officially" released from my outpatient status I got on an airplane and joined my boyfriend a state away. I mention this not because it reveals that my mom and I had a difficult time living together but that 7 months after my accident I was pretty much able to build up my strength enough to live without a caregiver and rebuild my life. While it may take your son a little longer he will be independent again.

      Anyway...I hope you get some more responses here soon and don't worry most of your questions will be answered in time as your son's body begins to recover and show what it can do and you get to meet the rehab staff who will help you figure out what equipment he needs for independence
      ....unless of course you plan on trying one of the current trials of spinal cord regeneration talked about on this board then you need to move fast because the spinal cord has a time limit.

      You're in my prayers,



      • #4

        You are reinforcing what the SCI-nurses have said in the past. Family should not be caregivers. Being an adult and having a parent do the bowel program would be very uncomfortable to say the least. I know there are those on here that are caregivers for their children/spouses. My husband is my caregiver as far as doing typical household things that I am unable to do anymore.

        With what I go through, I try to keep my spouse out of the loop. He knows about bowel programs, but he has not had a hands on experience--and he won't as long as I have anything to say about it. He did help put in a cath once when I was having problems with it, but I still ask him to leave the room when I do personal care.

        I'm still not ready to cross that line. I prefer to keep him as my husband. As far as my parents doing that? No. I don't care if they did change my diapers. I'd rather have a nurse teach me or have a PCA until I was able to care for myself.

        This is just my opinion, as a para. Quads and other higher level paras may feel differently.


        • #5
          I moved this to the New SCI forum as this would probably be a more appropriate place to get the information you need.

          I assume he is not a military veteran, correct? If he is, he needs to go to a VA SCI Center.

          Since he is in Cleveland, I assume you are applying to get him into MetroHealth Rehab Center? They have a good program there, but in any rehab center, there are things you and he can do to maximize the experience.

          Attend all family conferences. There should be one the first week. Go with a list of questions, and don't leave until you get them answered.

          How accessible is your home? Get a home evaluation done immediately after his admission so you can start to plan for any needed home modifications. The most commonly needed are ramping to the front door and door widening (usually the bathroom, sometimes bedrooms). Ask if there are any local programs that may help with funding these modifications. This varies from city to city.

          I would anticipate he will only be in rehab 3-4 weeks as this is all that most insurances allow, so you need to hit the ground running with getting the home set up and equipment in place. He is likely to come home still in a back brace which will usually stay on for 3 months total. This will limit his ability to do his own care, esp. bathing and bowel care. Once it is off, he should become totally independent and not need your help at all. Ideally he should get some fairly intensive outpatient therapy or even a short inpatient stay again once his jacket is off, but not sure if your state's Medicaid will fund this. I would second trying to NOT be the one who does his bowel care. For a young man, having your mommy do this can be humiliating and embarrassing. If you can get a short term PCA or home health for this specific care until he is out of his jacket, that would be ideal. Talk to the case manager or social worker at the rehab center about this.

          Attend his therapies with him when you can, and ask lots of questions. Learn how and when to help him, but more importantly when NOT to help him. Mothers are notorious for doing too much. He needs to struggle to learn to do things for himself and you may have to learn to sit on your hands. Look to the rehab center staff for guidance in this.

          You should expect him to be in therapy at least 3 hours daily, and then also to participate in group and individual counseling sessions. Don't let him refuse these (as young men often do) as it will be critical that he get some help in coping with this that family cannot provide. Be sure he (and you) attend any group classes and do any reading assignments he is given. MetroHealth has an excellent CD-ROM on how to prevent pressure ulcers that we use at our center called Check, Rock, and Roll and I would recommend that he and all family members view this at least twice.

          Ask about equipment at the rehab center. They can advise both on what he will need (once the home evaluation is done) and what Medicaid in your state will cover. Don't buy anything without their advice. I have seen many family members waste a lot of money buying the wrong equipment without the correct advice. The main equipment he will need are 1) a wheelchair (which should be a rigid frame if possible, and as light as possible) and 2) bathroom equipment which would include a raised toilet seat or over-toilet commode and a shower or tub bench. Grab rails should be installed in the bathroom and they should tell you where to put these when they do the home evaluation.

          Does he own a car? If so, is it an automatic or standard transmission? Hand controls should be all that he needs to drive if he has a car, and he can learn this fairly easily. Medicaid will not cover these, so this is a good item to plan a fund raiser for. Be sure if you do any fund raising that the money does NOT go directly to him, as this can impact his Medicaid and SSI eligibility. If you are planning a fund raiser, let us know and we can provide some advice on how to set this up.

          Get an application immediately for your local paratransit system so he can get out by himself ASAP when he gets home and is not totally dependent upon family to drive him around until he can drive. There is often a waiting list (in my area it is 6-8 weeks). Contact your local ILC (find their address at ) for information about this.

          Medicaid should pay for his supplies and medications once he comes home. Ask his rehab team about their experience with how this is funded and any restrictions.

          Be sure his application for SSI is completed immediately. I assume he does not have sufficient work history for SSDI, but ask about this too. The social worker should help with this.

          Was he working or going to school when injured? If so, ask to get vocational rehab involved ASAP and get a referral to the state Dept. of Vocational Rehab. They may help him with funding for retraining or school. There is no reason he cannot go back to work, and getting a job with benefits and group insurance will get him off of Medicaid.

          Keep asking questions. We will help with all that we can.

          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.


          • #6
            Justine, I'm an incomplete T12. I think that several people here have answered your questions already. I just wanted to say that there are a lot of people here for support and we'll try to answer your questions and help you in any way. I would also say that it is still early after your son's injury. A lot will change for the better. Mike
            T12 Incomplete - Walking with Crutches, Injured in Oct 2003


            • #7
              Hi Justine,

              I'm so sorry about your son. You sound a lot like me; after my daughter's injury, I was very much involved in doing research, getting information and answers, and organizing. I also found CareCure then (except this was 6 years ago, and it was CanDo back then!)

              Anyway, you have received some excellent comments and advice, as usual. Do feel free to come back to the Caregiver's forum if you feel the need. My daughter was 18 when she was injured and a senior in high school. She was in her body brace at first, and I had to help her cath and do her bowel care. (Maybe this isn't such a huge issue for mothers/daughters; we just called it "doin' girl stuff"). We didn't always have a choice, either, which was a factor too. We lived in a rather remote area at the time, and did not always have access to PCA's who were willing to drive the distance to help Bri. So a lot of her care fell to me. The first two years are now a blur; she had some setbacks and scares, and it was hell. But now she lives on her own, in her own apartment, and is attending college. may not see it yet, but there is light at the end of that tunnel.

              Keep asking questions...keep gathering information...and know that you have a whole group of new friends who have been down this path.

              Take care,
              "God warns us not to love any earthly thing above Himself, and yet He sets in a mother's heart such a fierce passion for her babes that I do not comprehend how He can test us so."
              ~Geraldine Brooks, "Year of Wonders"

              "Be kind...for everyone you meet is fighting a great battle."
              ~Philo of Alexandria


              • #8
                Sorry to hear about your son's injury. There is really lots of people that can help you answer your questions.
                As for the injury, it's terrible to loose the function of your legs and continence. My hubby is t10 (complete) and 4 and 1/2 years after injury, he is his own caregiver. I have helped in in the first few months (pretty much till his brace came off). Then slowly but surely (and slyily) I made him do some things for himself. Also, even if the doctor tells you this early on he is complete, that still might change once his swelling goes down. Hubby has done lots of therapy once out of rehab and it helped him to get the strength and ability to do things.
                He became open to new things (that's how cutting grass and doing laundry, etc. became his job) - he helps with our 17 month old twins, and is expecting his handcycle next week, so we can get back on the trails just the way we used to do it before the accident (OK, I don't think we will do the extreme mountain biking anymore :-))

                But hang in there, there is still lots of hope for you and him!



                • #9
                  new t12/l1 complete injury

                  for david's momma:
                  i too am a t12/l1 and i'm in medina, ohio. been injured since 1991 (accident in the army). if you or david would like to talk about life with this injury feel free to contact me at (


                  • #10

                    I don't know how old your son is, but I'm 28 yo male; I was injuried in MVA 10-13-2005. I had an L1 burst fracture. I had the hospital contact my parents (who live out of state) and came in shortly after my operation. I spent 5 days in the ICU because I couldn't breathe on my own. I spent the next week in step-down room in the hospital.

                    I've just spent the last 3.5 weeks in a rehab hospital. Because I still need to wear the TLSO (back brace), I need my mom to help me with my bowel program and bladder program. I know I'll be able to do self care myself after the TLSO comes off but for me it's more comfortable having my mom do it, especially since I don't have the money to hire an aide.

                    I have private insurance, which my therapists tell me really sucks for SCI patients. In general, Medicaid recipients are usually able to receive what is medically necessary. I don't know this from experience, only hearsay from one of the guys I met in the rehab hospital.

                    In rehab hospital, I had 3 hrs of therapy (mix of physical therapy and occupational therapy where the therapist taught ADL activities of daily living such as dressing, putting on shoes, etc.). There are probably some home modifications you'll want to make (ramps, etc, for w/c). The program I was in had therapeutic recreation as well as access to clinical social worker and neuropsychologist.

                    Afterwards, they might order some outpatient therapies to continue his road of rehabilitation and independence.

                    It's been a tough couple of weeks, but I've got faith that God gives us enough grace for the moment. He's certainly given me strength to deal with my situations. Sometimes it seems like I can only deal with it, 1 minute, or 5 minutes at a time. But then I make it through another day.

                    I'll be praying for you and your son.


                    • #11
                      Dan, welcome. I assume from your screen name that you are from North Carolina? We have some other members from there too.

                      You have started off with a lot of good questions. Please let us know if there is anything more we can assist with. The first few months at home can be rough, but there are many here who can provide you with advice and support...they have been there before you.

                      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.