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  1. #1

    C5 ASIA B-Incomplete

    My 16 yr old niece was injured in a car accident and crushed her C5/C6 vertebrae. She had both removed and a carbon cage inserted and fused to C4 and C7. She had a hematoma (bruise) from C4-C7 with no other damage to the cord. Her accident was on July 27 so she will be 4 wks out on Monday. She is breathing on her own, normal swallow, good shoulder, bicep and forearm movement. Her wrist extension is getting much stronger and he may move her level to C6 as her wrists have improved greatly. She has basically no use of her hands/fingers. She has gotten sensation to light touch back in her feet and calf but not to pin prick, and in the sides of her abdomen and right arm-pit area. Her left side sensation has been slower but returns a few days or so following the right in a similar pattern. This week she was able to have a bowel movement and bladder sensation and now is urinating in her depends (she insists on saying diaper..she has a great sense of humor for a teenager!) more than the cath is getting which is great progress they are saying. She has had no motor movement below the chest until this morning when she was able to contract her right calf muscle intentionally when concentrating during the dr's rounds. He says she may still be in some spinal shock. Right now she is at a facility that doesn't really "specialize" in spinal cord injury. They see some and have a couple other patients right now and they are an excellent children's hospital for most things, but we are concerned that she needs to go to somewhere better able to deal with SCI. Her mother, my sister-in-law, wants to ride out the therapy here and see how it goes and then look at going to a better center, but I don't think with insurance this will be an option. We really need some input from those with experience in this. Also, from those who have been down this road with sensation and motor returning...how does her progress sound so far?? Thanks so much for input. I have learned so much that has really benefited her mother from reading on these boards.

  2. #2
    It is good that she is getting return this early. We hope that this continues, but no one can tell when it might stop or slow down.

    It is critical that she get to a SCI specialized rehab center ASAP. Most insurances will not pay for more than one rehab stay. When they decide to stop paying, or discharge her from the current one, it is extremely unlikely that she will be approved for another.

    You did not say what part of the country she is in. That would help us a lot. My first choice for her would be either a Model System SCI Center or a Shriner's Hospital SCI Center. There are 11 of the former and 3 of the latter in the USA.

    It is not a minor thing to go through the wrong rehab program. It is boot-camp for life with a SCI, and a bad start can lead to poor outcomes. Please try to get your SIL to reconsider. Please come back with more info and we can provide more advice.

    (KLD)

  3. #3
    She is strongly considering moving her very soon. We are in Arkansas and the hospital/rehab she is at now is Arkansas Children's Hospital and they apparently do not rehab many SCI's from what we have seen. When she moves her she wants to take her to the best place she can take her. She has done some research on a couple of facilities and I have been doing some myself. She had been looking at Chicago or Houston, then after seeing quite a bit of posting about Craig's on here I began researching them and we are now thinking maybe she should go there. She wants us to help her make the decision based on which facility we think would be best after researching them. I have spent hours looking at the different websites and forums and all 3 seem to have great things said about them. Would really appreciate some input.

  4. #4
    Hi twnzmom,
    I am sorry to hear about your neice. My son was injured last November at age 17. His first round of therapy was TIRR Houston, I would NOT recommend them, I don't know how they keep their status. The nurses were great, but as far as rehab, very old schoo. If you're looking for some place that would focus on the "possibilities", or hope, do NOT take her to TIRR. Well... let's just say, we will never again darken their doorway. If we could go back and change things, after all the research I've done, we would go to Craig/Denver.
    FAITH: Is not believing God can, but knowing he will.

  5. #5
    My niece is really fighting moving to a new facility. She is a very social teenager and does not want to leave her friends and family. We currently have a huge support system for her, but we want her to get the best care. Her mom is really struggling with forcing her to go. Due to that, we are thinking about maybe trying to go somewhere closer. We have been in contact with several people in our area who have SCI that went to Baylor and had great experiences. They didn't necessarily get a lot of function back, just had a great overall experience there they felt like. Can anyone give me some input on Baylor? It is only 3.5 to 4 hours drive from our home and so family and friends could still give her lots of support vs. Denver, Chicago or another model center where any visitor would have to fly. Of course, the best rehab is the priority but will Baylor be good enough?

  6. #6
    Senior Member BeeBee's Avatar
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    MAKE HER GO! This is so much more important than hanging with friends. My son was 17 when he was injured and we DIDN'T follow this advise. And still regret it. Sheppard's in Atlanta is also very good, especially for teens and kids.
    BeeBee

  7. #7
    You might take a look at the Spain Rehab Center, UAB Birmingham. A few years ago they had an excellent program but I do not have a feel for the current status.

    http://www.spinalcord.uab.edu/show.asp?durki=19769
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  8. #8
    Thank you so much for all of your input! I am looking up the places that have been mentioned. There are so many good places it seems. Another question I have....is the number of people they have go through their rehab each year with SCI a good indicator of their quality? For instance, Craig rehabs approximately 350 according to their website, the facility she is at rehabs maybe 25 we think so obviously she needs to move, on the other hand Baylor that she is seriously considering rehabs around 100 a year and is in the top 15 overall rehabs in the US in rankings. I do not think she will move her to Craig b/c it is so far away from home and she is a single mother with a 16 yr old and 3 other daughters, but I do think she will move her to Baylor which is 4 hours away. We have pushed about as much as we can push and my niece is coming around to the idea of Baylor...should we continue to push for Craig or Chicago or somewhere far off OR just make sure she gets out of her current facility and at least to Baylor? I hope my question is making sense!

  9. #9

    Rehab Dr Giving Bad Advice??

    I posted previously about my niece who is currently in a rehab in Arkansas that does not see many SCI patients. She is one month our from her accident, burst fracture of C5/C6, 16 yrs old, ASIA C5-B, and having some good sensory return throughout her body so far, only motor return below the chest has been voluntary contraction of calf muscle 4 days ago. That said, we almost have my sister-in-law convinced to move her to a better facility BUT she has mentioned it to her current physiatrist, a resident, and he has told her that she will not get anything better at another facility, that they are doing everything here that they will do for her there, etc. The attending has now came and told her the same thing. We, her other family members, do not agree with this and feel they are being self-serving. Right now she is getting 2-45 minute sessions of pt/ot co-treatment. That is basically the only services they provide. The recreational therapist consists of inviting her to a "teen room" in the hospital once a day and she has yet to go and talking with her about things she might becoming interested in now that she "can't" do the things she previously did...she was very athletic. I am so irritated by this. I have read all the websites about the other rehabs and what they offer...aquatic therapy, awesome recreation therapy, counseling services, outings, etc...basically preparing her for life...in addition to they do not offer the lokomat here and have told her that it is not proven to work, continue to tell her that e-stim will burn out the muscles so they will not do it unless the muscle is active and on a limited basis and that other places make that mistake..I could go on and on. Please, give me some info on what I can say to my sister-in-law in response to what they are telling her. Thanks in advance!

  10. #10
    twnzmom...

    I also am in Arkansas... My son has a SCI and we did our rehab at BHRI in Little Rock. He is now currently living in Baltimore doing therapy at Kennedy Krieger Institute. I would love to talk to your sister-in-law. I will private mssg you my contact info.

    The Arkansas Spinal Cord Commission just had a wonderful conference last Friday. I hope she was able to attend.

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