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Thread: Recent T-12 break

  1. #1

    Recent T-12 break

    I just discovered this site. My daughter, 20, hydroplaned in her car, landed in a ditch and has a burst fracture of T-12, with some fragments that broke off L-1 as well. I'm not completely up on the terms, so I may not describe everything perfectly. This happened 2 1/2 weeks ago.

    She underwent surgery and stayed in the hospital for a week after that and has been in a rehab hospital (National Rehab Hospital in DC) for six days.

    The good news is that she's walking with a walker and just graduating to a cane. Her left leg is weaker, and the foot turns in (I'm sure there's a medical term for this, but I don't know it). The worst thing right now is that she has no bladder function, can't feel she has to go or go without a catheter. I'm looking for stories about similar fractures where bladder function came back. Bowel works with meds.

    Thanks for any insights. Also just general stories about young adults/college students resuming life after such a traumatic event would be helpful.

  2. #2
    Sounds like your daughter sustained a cauda equina injury (often abbreviated as CES or cauda equina syndrome). She is still very early after her injury, so it is still possible that she may get more return, but only time will tell. National is a fine rehab center, and she should be able to manage her own bowel, bladder, mobility, and ADL needs by the time of discharge. Have you had a meeting with her rehab team and physician there? They should be giving you some prognostic information, although at this point no one can guarantee that she will get voluntary return or not. Are they talking about bracing (AFO) for her ankle??

    How is she doing with any neuropathic pain? This can be considerable in CES. Also, she should receive education and counseling about sexual dysfunction that can occur from this (which she is unlikely to want to share with her dad!!).


  3. #3
    Thank you for your reply. While I think the therapy is quite good at the National Rehab Hospital, the administration is pretty abysmal. We are getting NO information on her prognosis, plans for discharge, etc, despite asking. First we were told her team would meet in six days after admission, then told it was supposed to have been three, now it's supposed to be on Thursday (nine days after admission) but I'm not holding my breath. She's getting depressed being there, between the weekend and July 4, nothing is going on. I'm glad she's well enough to be bored, but it's frustrating.

    In the meantime, her walking is getting better and better. Her PT had her walking a little without a cane or walker today, which is amazing. Still the bladder and bowel issues, though, and cannot urinate at all on her own. And I'm not sure how we will handle those at home yet. I had railings built on the steps that go to our house and grab bars in the shower.

    She hasn't mentioned neuropathic pain, so it looks like she's dodged that bullet so far. I'm her mom, actually, but still will leave the sexual dysfunction talk to her and her doctor.

  4. #4
    Please speak up and complain to her case manager (and your insurance company) if she is not getting the information or teaching needed. You may need to tell them you will move her to a different program if her care there does not improve. Unfortunately, while formerly a Model System SCI Center (no longer), this facility is not CARF accredited as a Spinal Cord System of Care. Adventist Rehabilitation Hospital of Maryland is CARF accredited as a SCSC. Kennedy-Krieger in Baltimore is excellent, but serves only a pediatric and adolescent population.

    She should be learning to cath herself, and also to do her own bowel care already, so that she is independent in these when she comes home. Have they done an in-person or video/Skippe type home evaluation so that you know what modifications may need to be done? Does she still live at home full time, or is she in college or in her own place.


  5. #5
    Now I wish I knew about the Adventist Rehab Hospital, which is closer to my home and sounds much better. We were at a hospital 80 miles from home near the accident site for 11 days, so I was just Googling and trying to figure where in the world she should go next without any input except a few Facebook friends. From my Googling Adventist seemed to have a smaller spinal cord program.

    I really feel that I'm getting no guidance from anyone in the medical community on next steps, which is so frustrating. The case manager is pretty much a joke. She finally called me back this morning and didn't even have the date she was admitted to National Rehab correct, which is why the meeting about her was delayed. She just called me and told me we would have a "family meeting" in five days and refused to tell me anything else (not HIPPA related, since my daughter signed forms allowing me to be told information). That means we will have gotten no information for two weeks after she was admitted.

    They are supposed to be starting to teach her to cath herself. She lives at home and I have pretty much tried to figure out what accommodations need to be made on my own since no one has helped in that regard and get them done since I have no idea when she will be discharged. I've put up railings on the front steps and grab bars in the shower and ordered a shower bench. We will be moving her bedroom to the first floor. She is now going to community college.

    Sorry, to be venting but the way things are handled there (don't get me started about the bugs) is so hard on top of everything else! Thank you for your input and suggestions.

  6. #6
    Yes, Adventist is smaller than the NRH, but their CARF accreditation would indicate a high quality program. Sometimes smaller is better because you get more personal attention.

    I would encourage you to speak to the Patient Advocate at the NRH, and if necessary, with the director of the SCI Program and the facility about your issues. Regardless of whether or not they are CARF accredited, they are providing care outside of the community standard (using a national standard) for your daughter. I would also recommend that you contact your insurance company to complain as this may impact them including the NRH in their approved facilities for acute SCI rehabilitation. This may not help your daughter, but it may help others who are coming along the same path.

    Sorry it took you so long to find us, but we are here for you, and for your daughter. Please encourage her to join our Community when she is ready.


  7. #7
    Senior Member
    Join Date
    Feb 2011
    Washington DC area--------------------T3 complete
    Hi Barbalot - welcome to the community - sorry you had to find us - I did my rehab stint at NRH and made the best of it as I had no idea of where else to go. I had good and bad experiences. My rehab team was pretty good. The lack of communication from the admin was as you describe. I was there from just after Thanksgiving thru Christmas and the New Year. So I feel for you and your daughter.

    I hope you are able to transfer to another facility for the betterment of your daughter. I also want to say even though Kennedy Krieger is inpatient for pediatrics they do accept adults on an out patient basis. Give them a call once your daughter is released from inpatient rehab. The number for new patients is 443 923 9534.

    Best of luck,

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