yankeegirl
05-25-2005, 03:32 AM
Anybody out there have this done? I had it done in January. The plates come out next January probably. I am 29 years old and as a result of this surgery my abductors are very weak. Does anyone have a clue how long it can take them to get strong again? I can't drive as long as they stay this way. Do you think there's a chance they won't get strong again at all?
How do you all do when you are post-surgery and you just don't want to go out because everywhere you go people are staring at you or making comments or doing weird things like applauding??? How do you deal with people that want you to go out and do stuff, rightfully so? Is it okay to want to stay home and heal your own way?
Also, anybody have toe clawing? The past year or so my smaller toes have really been curling up. Also my second toe on each foot pops up above the others during the night and I have to keep fixing them! I had splints made to try to straighten them out, but they hurt and cause blisters and the doctor says they're not going to correct the problem anyway. Has anyone had surgery to correct this? If so, what's it like?
I have spastic diplegia which has gotten worse the past few years for reasons no one can figure out. I'm scared to death it's going to keep getting worse no matter if I had surgery or not. It is making me considerably depressed. Any advice/uplifting comments would be appreciated. Thanks!
How do you all do when you are post-surgery and you just don't want to go out because everywhere you go people are staring at you or making comments or doing weird things like applauding??? How do you deal with people that want you to go out and do stuff, rightfully so? Is it okay to want to stay home and heal your own way?
Also, anybody have toe clawing? The past year or so my smaller toes have really been curling up. Also my second toe on each foot pops up above the others during the night and I have to keep fixing them! I had splints made to try to straighten them out, but they hurt and cause blisters and the doctor says they're not going to correct the problem anyway. Has anyone had surgery to correct this? If so, what's it like?
I have spastic diplegia which has gotten worse the past few years for reasons no one can figure out. I'm scared to death it's going to keep getting worse no matter if I had surgery or not. It is making me considerably depressed. Any advice/uplifting comments would be appreciated. Thanks!
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NJenn
05-25-2005, 02:12 PM
Hi Yankeegirl,
I'm 26, spastic diplegic as well. I walk independently around my house, and use crutches outside. CP changes as we age. I feel it too. I depend on a wheelchair more and more these days.
I haven't had the surgery you had, so I can't really help you out there. The staring sucks, but it's something we will deal with for our whole lives. Maybe it bothers you more right now because of the extra stress from recovery? When an intervention changes the way we move, it can really put us on edge. I recently went into AFOs for the first time in my life. Although my doctors think my walking is much improved, I think it's worse. My balance is terrible, and I'm tied to my crutches in a way that I wasn't before. When I first transitioned into AFOs the staring bothered me too, moreso than usual. Don't be afraid to give your body the time it needs to heal. We take a little longer in that department. It's frustrating though, when all you want to do is get back to work and to your normal life with friends.
As for driving, I'm assuming you don't use hand controls? I've never heard of a diplegic who could drive safely without them, so if you can, kudos to you! Maybe you should look into them so that you can drive while recovering. I'd go stir crazy if I couldn't drive, and I'm sure that's adding to your stress. I don't know if your abductors will ever have the same strength that they did before the surgery. Unfortunately, muscle weakness is a crummy side effect of these surgeries. I've only had my hamstrings lengthened, and they are very, very weak. I had that surgery done in '87.
When the stress of CP gets me down (as it has been a lot lately), I find that stretching, meditation and swimming all help. I find myself thinking more about CP these days than I ever did before. I try to remember that I'm still the same energetic, fabulous ;) 20 something that I was before CP started kicking me in the butt, but it's hard some days. Above all else, be gentle on yourself, and don't be afraid to seek out a counselor if you feel you need it-- I did that a few months ago when I had that same "scared to death" feeling that you describe, and it helped greatly.
Take care,
NJenn, aka Nicki
I'm 26, spastic diplegic as well. I walk independently around my house, and use crutches outside. CP changes as we age. I feel it too. I depend on a wheelchair more and more these days.
I haven't had the surgery you had, so I can't really help you out there. The staring sucks, but it's something we will deal with for our whole lives. Maybe it bothers you more right now because of the extra stress from recovery? When an intervention changes the way we move, it can really put us on edge. I recently went into AFOs for the first time in my life. Although my doctors think my walking is much improved, I think it's worse. My balance is terrible, and I'm tied to my crutches in a way that I wasn't before. When I first transitioned into AFOs the staring bothered me too, moreso than usual. Don't be afraid to give your body the time it needs to heal. We take a little longer in that department. It's frustrating though, when all you want to do is get back to work and to your normal life with friends.
As for driving, I'm assuming you don't use hand controls? I've never heard of a diplegic who could drive safely without them, so if you can, kudos to you! Maybe you should look into them so that you can drive while recovering. I'd go stir crazy if I couldn't drive, and I'm sure that's adding to your stress. I don't know if your abductors will ever have the same strength that they did before the surgery. Unfortunately, muscle weakness is a crummy side effect of these surgeries. I've only had my hamstrings lengthened, and they are very, very weak. I had that surgery done in '87.
When the stress of CP gets me down (as it has been a lot lately), I find that stretching, meditation and swimming all help. I find myself thinking more about CP these days than I ever did before. I try to remember that I'm still the same energetic, fabulous ;) 20 something that I was before CP started kicking me in the butt, but it's hard some days. Above all else, be gentle on yourself, and don't be afraid to seek out a counselor if you feel you need it-- I did that a few months ago when I had that same "scared to death" feeling that you describe, and it helped greatly.
Take care,
NJenn, aka Nicki
JellyRJFan
05-25-2005, 03:07 PM
I have the same issues with my toes. About 4.5 years ago I had a "hammer toe repair" on my second toe on the right foot. They planned to cut the tendons, but they were too tight, so they took out a bone and gave be an artificial joint. They also released the tendon attached to my big toe, so it wouldn't stick up as much. Having said that, I would not recommend this surgery. It was such a waste. One of the primary reasons I had it done was because my mom didn't like the way my foot looked. And now since my toe doesn't have a joint it breaks all the time!
yankeegirl
05-29-2005, 06:13 PM
Hi Nicki,
Thanks so much for responding to my questions. I was looking into getting hand controls so I could get my life back sooner, but it seems like it is too much money and work to go through for something that could still be temporary. Plus my car is old and I don't want to have added the controls and then have to do it again because I need a new car shortly thereafter! I don't know how much it costs and since I'm not working now I just don't have the money. On the other hand I'm spending money on car insurance for a car I never drive. Tough call.
My doctor says adults take longer to heal so I should not be worried yet about slower progress. It's just taking a toll on me because people at my job are waiting to hear when I can come back, which I can't until I can drive, plus as I said, it hurts my feelings somehow every time I go out because someone has to make a comment or do something to hurt me. My whole life I've wanted to just be a person, not a person with something wrong. I've said it before, it's like being a celebrity without the glamour. I've been to two counselors during my life to help me get over this, but there isn't anything they can say to change me. It's that I feel otherwise I am attractive and smart and funny and all that good stuff, but this is like a big subtraction sign. I envy those who have a "who cares, take me or leave me" attitude. I care way too much!
Thanks again for responding. Hope you have a nice holiday weekend.
Thanks so much for responding to my questions. I was looking into getting hand controls so I could get my life back sooner, but it seems like it is too much money and work to go through for something that could still be temporary. Plus my car is old and I don't want to have added the controls and then have to do it again because I need a new car shortly thereafter! I don't know how much it costs and since I'm not working now I just don't have the money. On the other hand I'm spending money on car insurance for a car I never drive. Tough call.
My doctor says adults take longer to heal so I should not be worried yet about slower progress. It's just taking a toll on me because people at my job are waiting to hear when I can come back, which I can't until I can drive, plus as I said, it hurts my feelings somehow every time I go out because someone has to make a comment or do something to hurt me. My whole life I've wanted to just be a person, not a person with something wrong. I've said it before, it's like being a celebrity without the glamour. I've been to two counselors during my life to help me get over this, but there isn't anything they can say to change me. It's that I feel otherwise I am attractive and smart and funny and all that good stuff, but this is like a big subtraction sign. I envy those who have a "who cares, take me or leave me" attitude. I care way too much!
Thanks again for responding. Hope you have a nice holiday weekend.
yankeegirl
05-29-2005, 06:18 PM
Hi JellyRJFan,
I think I may have the hammer toe thing too, meaning my big toe is actually pointing inward causing the second toe to have to pop up. From your response and many other things I've read on here it seems surgery likes to cause new problems! I've had my hips straightened out so my feet and knees don't turn inward so much, but now my hips are so weak I can't move my legs sideways very much, which is more of a big deal than I would have previously thought. Well thanks for the info; I'll now be more careful if toe/foot surgery is suggested to me because of my new toe issues. Plus I figure if my feet get worked on (in addition to hips and hamstrings) it will take me even longer to recover from my next surgery!
I think I may have the hammer toe thing too, meaning my big toe is actually pointing inward causing the second toe to have to pop up. From your response and many other things I've read on here it seems surgery likes to cause new problems! I've had my hips straightened out so my feet and knees don't turn inward so much, but now my hips are so weak I can't move my legs sideways very much, which is more of a big deal than I would have previously thought. Well thanks for the info; I'll now be more careful if toe/foot surgery is suggested to me because of my new toe issues. Plus I figure if my feet get worked on (in addition to hips and hamstrings) it will take me even longer to recover from my next surgery!
stinkydom
06-10-2005, 04:45 AM
It's that I feel otherwise I am attractive and smart and funny and all that good stuff, but this is like a big subtraction sign.
"All that good stuff" adds up to more than you could ever put on the "subtraction" side. You're also warm, caring, dependable, thoughtful, insightful, and really freaking good at being a good mommy to your kitty.
Take it from a guy who loves you: the sum of your parts is a really breathtaking sight.
"All that good stuff" adds up to more than you could ever put on the "subtraction" side. You're also warm, caring, dependable, thoughtful, insightful, and really freaking good at being a good mommy to your kitty.
Take it from a guy who loves you: the sum of your parts is a really breathtaking sight.
NJenn
06-10-2005, 11:52 AM
We need more guys like you in the world :)
stinkydom
06-11-2005, 02:11 AM
We need more guys like you in the world :)
Well, if you can convince Yankeegirl that having my kids wouldn't be a plague upon the world, then you might just get that wish!
;)
Thanks for saying that, though, it's nice to hear. I just try to give her the love and devotion that she deserves -- Lord knows she gives it back in spades.
Plus, she's a knockout! We went to my best friend's wedding last weekend, and EVERY head in the room swiveled when she made her entrance -- at the rehearsal party, too. Wow, wow, wow!
Well, if you can convince Yankeegirl that having my kids wouldn't be a plague upon the world, then you might just get that wish!
;)
Thanks for saying that, though, it's nice to hear. I just try to give her the love and devotion that she deserves -- Lord knows she gives it back in spades.
Plus, she's a knockout! We went to my best friend's wedding last weekend, and EVERY head in the room swiveled when she made her entrance -- at the rehearsal party, too. Wow, wow, wow!