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Anyone familiar with Kluge in VA?

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  • Anyone familiar with Kluge in VA?

    new here..first post.. looking for info on Kluge Rehab Ctr in Charlottesville VA. My 14 yr old son Robert had surgery to repair a significant spinal fluid leak, ended up with a blood clot that injured/compressed his spine at the T4. This just happened last week, my head is spinning trying to understand what is happening and what his future holds. We are originally from NJ, now live in VA, Robert is a huge Rutgers fan! Any information you can provide to a frightened mom is appreciated. Thank you.
    [IMG]/forum/images/misc/progress.gif[/IMG]

  • #2
    hey sharon i went to kluge when i had my sci..any questions you have ill try to answer

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    • #3
      This is so new to me I dont even know what to ask yet! Did you feel that you received the best care at Kluge? How long ago were you there? If you had a 14 yr old son with a SCI would you take him there?

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      • #4
        Another Mom here...welcome! bringing back a lot of memory's...for me I was in such a space that I didn't even know what questions to ask...didn't find ccc until the second year so it is good you found carecure early! The answers are here...you will get through this...you will! Just remember to take care of you, easier said than done I know...but it is the most important thing you can do! hugs, judy

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        • #5
          i did receive pretty good care there..i was there 2 months, i think i would look for a better rehab i mean they did do pretty good but i think they could have done more you know? but i was there 3 years ago so im not sure how it is now...would you like to get in chat and ill talk to you bout it

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          • #6
            Kluge Children's Rehabilitation Center and Research Institute is CARF accredited as an acute general rehabilitation center. They are not specifically accredited as a Spinal Cord Injury System of Care.

            Any chance you can get him to Shriner's in PA instead? Their SCI program is excellent. Kennedy Krieger in Baltimore is also highly recommended.

            (KLD)
            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.

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            • #7
              this is exactly the information I was looking for.. thank you! I will look into Shriners.

              my son seems to be gaining some feeling back slowly, it is inching down his chest. he also has good reflexes in his feet and his sphincter, the physical therapist dr feels that is a good sign. at this point nobody can/is telling me what to expect...I have no idea if he will walk again

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              • #8
                Those are definitely good signs.
                CWO
                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.

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                • #9
                  This site is such a blessing...I found CareCure through BrainTalk, have been a member there since my son was diagnosed with his CSF leak. I cant thank you all enough for sharing information.

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                  • #10
                    When injured in 1978, I was taken to the "Towers" in Charlottesville VA, guess it was a part of UVA, after a few weeks was sent on to fishersville's Woodrow Wilson rehab
                    We must reject the idea that every time a law's broken, society is guilty rather than the lawbreaker. It is time to restore the American precept that each individual is accountable for his actions.
                    Ronald Reagan

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                    • #11
                      @Sharon, where do you live?

                      I grew up in Charlottesville (just moved to NC in April) and have a few friends who work @ KCRC. It's decent, but far from the best in terms of SCI rehabilitation. It's specifically tailored towards children.

                      40min west in Fishersville is Woodrow Wilson Rehab Center (www.wwrc.net), which is a better choice if you're looking in central Virginia. Richmond has a couple options as well (MCV, Sheltering Arms).

                      I went to The Shepherd Center, in Atlanta. Logistically it wasn't the easiest decision, but it was one of the better ones my family made at the time.

                      Do NOT skimp on quality of care if at all possible.

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                      • #12
                        Scott,

                        We live in Midlothian, just outside of Richmond. I want the best care, regardless of where it is. So far Im hearing Shriners in Philly and Kennedy Krieger in Balt. I will look into The Shepherd Center as well.

                        Thank you!!!

                        Sharon

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                        • #13
                          Right on. The top two, IMO, are either Shepherd in Atlanta or Craig in Denver.

                          http://www.shepherd.org/
                          http://www.craighospital.org/

                          There are better centers outside of Virginia.

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                          • #14
                            Originally posted by SharonD View Post
                            This is so new to me I dont even know what to ask yet! Did you feel that you received the best care at Kluge? How long ago were you there? If you had a 14 yr old son with a SCI would you take him there?
                            Given that he is 14, I would send him to either Shepherd or Kennedy Krieger. You can get info specific to paralysis at www.paralysis.org
                            Submitt a question to an Information Specialist and they will send you a new injury package.
                            Every day I wake up is a good one

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                            • #15
                              I wouldn't send my child there if I had the choice. I have a c-7 quad friend that was sent home from there not even knowing where to start on feeding herself. I know we all can't do everything another might be able to, but that's ridiculous! The saddest part is that she was also coming home to a baby she had no clue what to do with. She was 17 at the time & I know things would've been different if she would have went somewhere else. Her parents thought all because it was @ UVA that it was a good thing. Not even until she/they met me did they realize how she was robbed.

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