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T4 - june 10 2008

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    T4 - june 10 2008

    hi i became paralyzed june 10 2008. so i am 8 months out. i have been dealing with bladder spasms also as well as muscle spasms. i was on detral which didn't work then i was on ditro for a while. that gave me head ache and blurred vision. i just stopped that and am not on anything. i am having a hard time with the leaking to. my mom helps me strait cath every 3 to 4 hours during the day. i don't do it at night and am fine most of the time.
    i am looking to have the procedure done where i can cath through my stomach to. i can't wait to be able to do that on my own!!! FREEDOM!!! or a little bit more freedom anyway and INDEPENDANCE!!

    i do not remember losing my hair i have so much it wouldn't have made any difference...haha.

    oh yeah i'm a t4 para and i'm also a little person which makes things a little harder to do on my own. i'm only 3' 5".

    i spent around 3 weeks in the hospital and 5 or 6 weeks in a rehab unit. i didn't go to a big rehab place mainly because i wanted to stay close to home where family and friends are. now i'm not sure if i went to a big rehab facility if maybe i would be able to do more or if i would have gained anything more back. i guess no way of knowing. thanks for listening.

    #2
    Welcome here Bailey. You'll find answers to any question you can come up with, here. Dr's and nurses are very good. Hope all works out for ya.

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      #3
      Hi bailey I became a sci in may 2008 so only one month ahead of you..t6-t9 . I found it very hard. but as time goes on it gets easier. This site is great for support. The people here have more strength courage determination and ambition than anyone else...

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        #4
        Hi Bailey, it seems you would definitely benefit from an evaluation from a top notch urologist with lots of sci experience. Also, because you are a little person you would benefit from a very experienced, creative rehab staff so I would weigh in on the side of doing some additional rehab after some research, you may want to question facilities about whether they have dealt with a little person with sci previously.

        Sounds like you have a close and supportive family, that's a great start.

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          #5
          Welcome Bailey! Damm another one of you being so young!! Have you tried Vesicare yet? I was on it and loved it.

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            #6
            Hi Bailey,
            My son had his accident on June 4, 2008 so very close to yours. He also is a T4. He gets cathed every 4 hours and we found he has no leakage if after cathing him we press gently on the bladder to get the rest of the urine out. He still leaked when he took meds and we found this to be the best.
            Try to keep working your upper body as much as you can. That is where all your strength is going to be. As a little person I am sure this won't be easy for you but it is something you must do. My son had multiple other injuries in addition so it is slow going but we are all working at it with him. We spent the whole summer last year in hospital and rehab and this year we want to be out and having some fun. He is in the hospital now for a few days with some blood clots in his legs. They feel they might be old ones that were there when he came home. Who knows. Just don't give up and keep trying Bailey.
            DavesMom, Diane

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              #7
              Bailey-
              If the oral bladder meds haven't worked for you or you want to try another route, I've had the bladder botox done & it's been a HUGE improvement...I was taking Sanctura & it was working, but I was taking twice the FDA recommended dosage, so my insurance wouln't pay for it. I had the botox done in August, needed it again in December...It typically lasts about six months & the more you have it done the less ofthen you should need it...I'm so glad I got it done & wouldn't go back to oral meds unless I absolutely had to...
              'Chelle
              L-1 inc 11/24/03

              "My Give-a-Damn's Busted"......

              Comment


                #8
                Bailey, Check into botox in your bladder for your leakage. Its been amazing for me & others! Also don't rush into the mitrofanoff..Your injury is still so new & it really will get easier with time. I am a T4 as well and it took me a long time(bout a 1.5 years) to independently cath from my chair. I can cath from my chair very easy now!! Give yourself some time & practice before rushing into a major surgery. Im self conscious and no way would I want a pee hole on my stomach!
                Life is like a box of chocolates, you never know what you're gonna get.

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                  #9
                  I would like to echo the above posters thoughts. I took me awhile to cath from my chair. Keep trying. Things do get easier with time.

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                    #10
                    you found the right place. hi. do you have bad hand control? a lot of people learn to cath with poor hand control. do you see a physiatrist who specializes in sci patients? that way if you would benafit from a sci center, you are more likely to be referred and encouraged to go to one. also a urologist who is used to treating sci patients is important. some urologic problem are entirely sci spacific.

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                      #11
                      I'm sorry I haven't gotten back to anyone!! Thank you all for the warm welcome!! I have been dealing with some health problems and baclofen pump challenges.

                      Went to see my surgeon yesterday who put my pump in. Didn't like how things went with him at all!!!! All he had to say was my incisions looked great but I had some additional questions for him about head aches and some other stuff have been going on and he didn't even want to to listen.

                      So we had the guy who is head of anasia and his pain clinic paged and he told us to come right over to his office. He spent 3 hours with me and my parents going over everything symtom I've been dealing with.

                      As of right now I have I'm not sure what I'm going to do about a urologist I think I'm going to have this guy refer me to one in the same hospital. By the way I've been going to Boston Childrens Hospital not sure if any of you have heard of it. Been going there for almost 20 years.

                      I'm not exactly sure if the pain doctor I see now has had any prior experiance in working with SCI patients. He's doing a really good job so far in trying his best to figure out what's going on.

                      Problem with having a urologist 5 hours away is I would have to go down to see every time I a UTI or something. any other advice would be great!! Oh yes to touch on the cathing I am not able to manuvor myself around enough to cath the regular way in my chair. That is the reason for wanting the mitrofanoff surgery. I don't think it's going to happen for a little while but to look into it and start thinking about it a little more.

                      What are some things I could be doing besides regular pt to regain anything I can? Thanks everyone for listening.

                      Comment


                        #12
                        God bless

                        I had my t7 injury in 6/3/07 and everything you are struggling its normal. Time with following the training people give you will bring expirence and you will find yourself doing things on your own but you have to be strong mentally and want to do the right thing for yourself after you feel better. I can pretty much live on my own if i could afford my own place but life has been different so patient has to be my best of friends. Mentally i choose GOD to help me work the things in my mind as well as spirituality. Well welcome and here you will find a wealth of information but know that you have to want to advance because it is TOUGH lol it is! once again GOD BLESS!
                        Sincere Sammy.....
                        life begins when you walk in spirit papito189@gmail.com

                        Comment


                          #13
                          hello Anna, we talked in the chat room allot, but i didn't know you were in a small rehab out of the hospital. Don't kick yourself in the ass to much about it, I chose the small local rehab here in town to. I could have went out to Pittsburgh, but like you said it would have been to much trouble for my family and friends to see me. I was Injured right around the same time you were, just 7 fays later. June 17 08 was the last day i stood unassisted
                          T6/T7 Incomplete Since June 7th 2008
                          Walking part-time with KAFOs & Walker
                          *Never Quit Pushing*

                          http://profile.myspace.com/index.cfm...endID=20290962

                          Comment


                            #14
                            Hi Bailey,

                            For "routine" UTIs you may be able to use a local lab for C&S (Culture & Sensitivity) tests. C&S results, along with your physical symptoms, tell the doctor if you have a treatable UTI and what antibiotic is best for treatment. Talk to your urologist about it. He or she could call an order into your local lab and you could just drop a urine sample off there. Driving 5 hours to see a doctor, especially when you're sick with a fever etc., just to first obtain and then drop off a urine sample for them to test or have sent out to a lab to be tested, is unnecessary.

                            Make arrangements with your urologist beforehand and it could save you that long drive. Have a sterile urine sample cup available at home.

                            Or get a local urologist to handle routine stuff. After the both of you become acquainted with one another and get a grip on your problems, routine things like UTIs can sometimes be handled over the phone. The ER is always an option but usually not necessary if you think ahead a little bit.

                            I hope your SCI "complications" are few.

                            Welcome to CC.

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

                            Comment


                              #15
                              Hello and welcome, Bailey.

                              I would echo what others have said - with just 8 months since injury, you probably haven't achieved all that you can re: self-care.

                              I've got a T4 complete injury as well, and I was still struggling with cathing many months post injury. I asked my sci doctor for a suprapubic, as I couldn't cath except on a bed, and he said no! (Although he did say I could see someone else about it).
                              And you know what, I am glad, because I eventually got to a point where I could cath on my wheelchair.

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