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Thread: tendon surgery?

  1. #1
    Distinguished Community Member
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    Default tendon surgery?

    I know it's been discussed here before but I was just wondering if anyone could offer some experience with tendon transfer surgeries.
    Mary Grace

  2. #2

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    post deleted
    Last edited by jul97; 09-10-2011 at 12:10 PM.

  3. #3

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    Testing.. I tried to post a repply yesterday and it said that it had to be approved by a moderator..Really annoying and to me over 24 hour lag shouldn't be acceptable for this board.. Especially since topics frequently have to do with medical situations..If you care about another poster's kiddo, you won't want to wait over 24 hrs if their parent posted an update.If you are a parent in a hospital with your kid, facing a decison, you do not want to have to wait 24 hrs for others to see your post.

    Off topic but irked that I couldn't post on topic..

  4. #4

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    Since that posted instantly, let me try to post what I originally intended to.

  5. #5

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    post deleted
    Last edited by jul97; 09-10-2011 at 12:11 PM.

  6. #6

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    Wouldn't let me..

  7. #7

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    My background
    32 y/o female, dxed with cp @ 13 mos and dystona @ 16 years. . Three surgeries-Femoral Osteodomies at 11, hardware removal at 12 and rectus transfer/hamstring lethenings at 15-all three were bi lateral. (Sorry too lazy to check the spelling on that list.) I was independently ambulatory prior to all three surgeries. Surgery number one and three were preformed as a proactive measure to keep me ambulatory andcorrect my gait.

    Muscle Transfer Surgery Process/Recovery
    (Was 15 @ the time)

    >First, every body's different!!! Just because I went through something be it physical or emotional-doesn't mean you will.

    >Being a 15 y/o teenager when we scheduled the third surgery-I was really concerned with how my scares would be, long term. Surgery number one, the scares where on my hips and didn't show if I wore shorts or a skirt. I knew with this one the scars would show if I wore such and was concerned that may change my life-forever! One the last day of tenth grade, I knew I was having it done in five weeks. I was thinking to myself is this the last day I'll ever wear shorts to school? Then on the bus home that day, the other girl was wearing shorts and her scares were big, ugly, raised-I just starred out the window...

    >It turns out, yes that was the last time I wore shorts to High School. From about 15 to 20-I didn't like to be seen with bare legs. My first year of college, I'd think to myself-my first good job, I am so going for plastic surgery for my scars. But fast forward to now, I do wear shorts without thinking of it. When I do so I am way more conscience of oh god, did I do a good enough job shaving my legs then my scares? (Being a woman) I mean, if I saw a woman with a scare, I wouldn't think about it. But if I saw a woman with spotty, hairy legs-I'd think it's about taking care of yourself. If I got lots of money now, plastic surgery for my scares wouldn't even be own my list of what I need/want. I am thankful whenever I think about this part of my life that my scares turned out so well, they're barely noticeable! I don't know if that's due to luck, my surgeon's skill, pro-active scare management following my procedure or a combo of the three..

    >Before the surgery I thought OK how is this going to work, since I'll have incisions on both the top and bottom of my legs, how do I lie following the procedure so that I am not lying and putting pressure on any incision?? The first couple days following it-this wasn't an issue. I laid on my back, yes did have pain, but didn't feel any of that pain was resulting from I am laying on where they just cut me open.

    >Had an epidural the first two days-wonderful, recommend that! Two, epidural tips-one, in the hours immediately following the surgery I had pain in my lower back, again from having pressure on the needle that's going into my spine. I finally was able to communicate to my mom where she needed to place a pillow under my lower back to enable me to rest a lot more comfortably! You may want to put a pillow under where they have the line entering their back.

    Two, the epidural made me unable to produce urine. Of course while hospitalized they won't just let one go w/o going. This led me to need to be cathed. Not the most comfortable procedure either physically or emotionally. If I did it again during pre-op meetings I'd request that if I had an epidural, I made that chose in pre-op meetings. I would also ask that they put in a Folly Cath while I was under general anesthesia so I wouldn't have to deal with that procedure being done post op. I got lucky in that my nurse said rather then us have to cath you every 12 hrs, we'll do a folly so that you only have to go thru it once. Also-I needed the tubing tapped to my inner leg again to rest more comfortably. (Cathing may be different for guys)

    >Soft tissue surgeries are by far way easier than bone surgeries!!!!

    >I won't lie-the day after my soft tissue one was rough! All I wanted to do was lay there, don't move me and I wasn't eating yet. Knowing the system, I'd always schedule my surgery for Friday because I knew I wouldn't have to go down for therapy till Monday. I knew Sat. they'd have bed side but wouldn't need to get up until Monday! Now this was in back in 1995. Today, with HMOs and different proto calls-that may not work.

    >I had the thing on Friday, I'd say by Tuesday I was feeling back to my old self. Eating, in a WC able to push myself, talking to people, etc.. If they had discharged me that Tues I would have been fine to go home. I would have take reg Tylenol and Motrin-alternating by mouth every two hrs and that controlled my pain enough to where sometimes I'd go och, but wasn't in constant agony.

    I was happy, that I was transferred to rehab not discharged at that point! Knowing the game, I knew I'd get the best follow up therapy in the hospital and to me why put yourself through surgery if you weren't going to push for the best outcome, therapy was crucial to achieving that outcome! Also, I had OT issues, that were not related to my surgery but due to my insurance the only time I'd receive OT was when I was an in patient. My insurance didn't cover out patient OT and my school district wouldn't address ADL issues due to they were not relevant to my performance in school. So going to rehab ment therapy that I needed for me!

    >After Tendon lengthenings the most painful thing was for, me stretching, that is done by the PT. I was thankful that I was 15 not five so I know that A) needed to be done and B) It will be over in 10 minutes, in an hour I'll either be back on the unit or in my next therapy-the intense pain will be over!! I just told my PT, who I loved, just do it-I am fine-just get it over with!!!!!

    >After Tendon lengthening , for me, the most annoying thing was I needed to sleep in knee immobilizers for three months. Hated it!! So annoying, every morning I'd wake up ripe them off as fast I could and just Itch my legs for like five minutes...My mind set was your almost 16, you need to suck it up and do what you need to do for the best outcome!! If you don't, why did you bother doing the surgery?

    >I got a minor rash on the back of my legs from the bandages. It went away on it's own-just didn't look very nice for a few weeks..

    > Read these thread: http://brain.hastypastry.net/forums/...ad.php?t=18768, I posted a link to a fact sheet aboout common CP Surgeries that may be helpful to you in prepareing for a pre surgery consult.

    My Long Term Result
    The question you have is probably are glad you did it? That's really complex for me! I had a real easy recovery for the first five weeks. Spent the first three weeks in rehab before coming home for good. Pre-surgery I was told I'd be on a walker for three to six months, so that was what I was braced for! By my second weekend home, I was w/o the walker, around my house, it was wonderful! I went on vacation my second week after I got home from rehab-did great! I was able to take a walk on the beach for the first time in about five years! My gait was the best it ever was-we were so happy!! That point yes, if I had to choice surgery or having to wear AFOs indefinitely. I would have chosen the surgery. I hated AFOs. I am the type if you can fix something with either surgery or medication, do it. If not, I'll just live with the foot drope when I walk. Don't see any poiont in putting plastic things on my legs daily when they'll never correct the problem. That's just how I look at it.

    But then mid-week five, I had lost all gains from the surgery and started having spasms. It turns out I have Dystonia on top of CP! The Surgery had set off a the Dytsonia which then caused me physical, emotional and academic suffering the year following the surgery.

    Due to the Dystonia-I regret doing the surgery. It's hard for me to tell people my honest answer! I do not want to scare anyone-the Dystonia was just a freak thing that happened to me! There's no reason to think that it will also happen to your child! Especially if you ask the docs, before hand is it possible he also has dystona and this surgery could set it off?

    I think had it not been for the Dystonia, I would have been happy with my choice to do it, long term! As I said a month later we all thought the surgery was our miracle-I felt truly lucky! But again, my recovery at that point went waay faster then we had planed. So I don't want to paint an overly rosy picture either! After my Femoral Osteodomies, it was a long road and at times we felt that those we talked with before hand had sugar coated it. Yea, walking on the beach exactly a month post up, what were they on my doc's payroll. I went through a period during sixth grade were I was that cynical about surg #1. However, that past, realized it wasn't my doctor's fault and ultimately I was glad I did the first surgery. (Hope I didn't confuse you, with my saga)

    Soo, that's my story, I hope I am walking the line right and not scaring you guys or overly sugar coating it by describing my early weeks post op when we were so happy. All I can do is be honest and say everyone different! Ask the docs lots of questions.. What I possted may not be relevant at all to you!!


    GOOD LUCK!!!!!!!!!!!!!!!!
    Last edited by jul97; 09-10-2011 at 04:13 PM. Reason: spelling

  8. #8
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Hi Jul97 ~

    Please report this glitch to the Forum Feedback board, so that Mike Weins can be aware of it.

    I completely agree with you that we need immediate posting.

    The moderation feature may be employed to stop spam. I don't know, just guessing as that was a problem with our old forum.

    But the best place to report this problem is to the head honchos, so that they can fix it.

    Please don't give up though! Mary Grace needs advice, and I have no experience with tendon surgery, so I'm no help.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  9. #9

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    bumping up, it's finally right..Just want to make sure Mary Grace see's my reply.

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