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Thread: newbie looking for post spinal stroke sci therapy advice

  1. #1
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    newbie looking for post spinal stroke sci therapy advice

    Greetings, first time poster here.
    My wife was diagnosed at Brigham and Womens Boston recently with a spinal stroke. It took 12 days of a "million dollar workup" in their Neuro ICU and step down unit to come to that conclusion with GBS being the first suspicion and everything from VD to AVM eliminated. They were eventually confident that one or more of the 5 MRI's showed an infarction (I believe at T12).
    Sypmtoms included paralysis of ankles and feet with cold and sharp sensory loss in those as well as various places on her legs and behind. Lack of control voiding. Significant weakness in certain leg motions. They were quite challenged with the case and had her on grand rounds and everything. In any case, there is nothing to be done to treat the condition except to go for rehab in an appropriate facility. We chose a suburban rehab hospital which had a decent neuro reputation. Problem is they want to discharge her to home therapy (eventually followed by outpatient). But I can't believe after just 2.5 weeks, essentially 12 fulltime days of therapy, that they've done all they can. Clearly at home will not be anything like being in the facility. What are other people's experiences in this regard? She has made significant progress and is able to move one foot pretty significantly and the other less so. Limited walking with braces, walker and assitance. Also tried removing catheter and using flomax and may be able to manage that. Not being an expert I don't have much ammunition to argue the point, but can't believe an SCI victim should only get 12 days of inpatient therapy.

  2. #2
    The average inpatient rehab time for someone with a new SCI and a paraplegic type injury is now 18 days (including weekends). I agree, it is too short, but that is the reality, driven nearly 99% by insurance companies. Have you requested an extension? Is it her insurance that is limiting her days or the rehab program?

    It would have been best if she had gone to a specialty SCI rehab program rather than a general rehab program. Is this a CARF accredited rehab facility? If so, accredited for which programs??

    Has she not been tried on self intermittent catheterization? Is she on a bowel program she can do herself? Has an appropriate wheelchair been ordered? Have you had a home evaluation? Are needed home modifications under way or finished?

    I would strongly encourage you to look into an intensive outpatient rehab program in Boston where she can get on-going therapy at least 3X/week, and which also can provide expertise from a SCI specialty physiatrist and advanced practice rehab nurses if at all possible.

    (KLD)

  3. #3
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    Thanks for the reply. According to the case manager, they would have no problem asking for an extension from the insurance company if one was warranted medically and could do it up to the last minute if the doctor indicated it was necessary, but they feel anything inpatient after Wed. would just be "redundant". My argument is that the majority of what they've done is coping skills to be in the home by compensating with appliances or using different muscles, etc. That is fine and important, but the rehab should also focus on the actually injury too. They essentially asked us to do the home evaluation by having me take a few measurements. They refuse to do one. They asked us to do a "theraputic leave of absence" yesterday by having me bring her home to see how she can get around. She hasn't even been cleared to get up by herself. They expect someone to be with her for the first five days. Doesn't that say she isn't ready to be discharged? The case manager at B&W hospital pushed this place billing it as equivalent to Spaulding for Neuro rehab capabilities, but I'm not impressed, but then again I have no experience to base it on. One nurse thought she had MS. Another clearly didn't understand her bladder issue. It took 15 minutes to respond to a bed call for her neighbor the other night.
    They mentioned self cath, but so far she has been reasonably successful with the urinating on her own. She says she can now feel the bladder full sensation which she couldn't before. She can't control it and just goes to the toilet periodically. They prescribed Flomax. Same for bowels. She seems to be managing that somehow with softeners and laxitives.
    Looking on the bright side, she has regained quite a bit of motion in the feet and that is very encouraging compared to where she was just a couple of weeks ago.
    I doubt I'll win the argument, but I will push to go right to outpatient rather than in-home. If you have any recommendations in the Boston area, please let me know.
    Thanks very much.

  4. #4
    My argument is that the majority of what they've done is coping skills to be in the home by compensating with appliances or using different muscles, etc. That is fine and important, but the rehab should also focus on the actually injury too.
    I am not sure I understand what you mean by this statement. Rehab is about teaching her to use the muscles she still has to do functional activities such as walking (if possible), transfers, bed mobility, etc. and to do activities of daily living (ADLs) such as dressing , bathing, feeding yourself, as well as personal care such as bowel, bladder and skin management, and how to keep yourself healthy with an injury like this. Currently there is nothing we can do to cure or make the cord damage itself better.

    Without knowing the name of the facility where she is ccurrently, I cannot tell you if it at all CARF accredited, but it certainly is not in SCI rehab. It is very unfortunate that you got such bad advice at Brigham & Women's (and I would call the case manager back and tell them so). There two mostly highly recommended places in the Boston area are the Model System SCI Center at Boston Medical Center, and (a distant second) Spaulding. While neither of these places have CARF accreditation as a Spinal Cord System of Care, they should be much more suited to meet her needs.

    Contact them yourself and ask if it would be possible to move her there as an inpatient immediately. If not, see if she can be an outpatient there. Conveniences is not the best way to select a SCI rehab program, so travel may be needed to get her needs met.

    (KLD)

  5. #5
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    She is at Braintree Rehab Hospital. They do have an SCI group as part of her daily schedule.
    I've had trouble expressing this, but I separate the ADL rehab work from work to get the most out of the ankle movement that she now has for example. Yes I realize there is nothing to make the infarction better but there is, I would assume, reason to focus not only on the things that will allow her to go home and make it to the bathroom or kitchen using braces and a walker, but to focus on trying to maximize the improvement any particular deficit, e.g., foot movement and strength. That is what I inaccurately refer to as "injury" but ... probably still confusing.
    I will contact Boston Medical and see what I can do. Thanks for the recommendation.

  6. #6
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    Earliest appt at BMC available is Aug 25....arrrrrgh... going to try Spaulding

  7. #7
    Quote Originally Posted by setanta View Post
    Earliest appt at BMC available is Aug 25....arrrrrgh... going to try Spaulding
    Hello Setanta;
    Glad you found this site but truely sorry you had to. Rethink the Spaulding appointment. BMC is better patient care. Had my son at both.
    Braintree Rehab does offer FES machine...Speak up about slow response time to bell ringing...they will listen. Overall BRH is clean and PT is decent there. It is encouraging your wife has had some recovery so early!

  8. #8
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    The Spaulding visits were ok, but don't feel any particular expertise/focus on the SCI at the satellite facility we're at. They are probably fine, but only gave us 2 appts per week, 1/2 hour each. That can't be enough.
    In the meantime I've found some connections to get her into Boston Medical Center's program and finally have an appt for next week. Yay! She's making good progress and happy to be home after being in the hospitals exactly a month (Briham&Womens 12 days and rehab the rest).

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