friend about to have a hip surgery

[funnylegs4]

My friend with athetoid Cerebral Palsy is about to have a hip surgery that involves cutting her left thigh bone. I'm not sure but I think she will have a femoral osteotomy. Have any of you had or know anyone who had this surgery? Any advice you guys can suggest to support her through this? She's worried about the surgery itself and being bored while being in the cast. I'll keep you updated on when she has the surgery and her progress afterward.

I hope I never have to have hip surgery myself. Honestly hip surgery scares me. I had a lot of hip X rays as a little kid and never had any issues Thank God. I find it interesting that my friend is an athetoid and needs this surgery. I would think someone with athetoid CP would have less issues with spasticity since they have a mix of loose and tight. Eh, what do I know?

[Donna Thomson]

Hi, my Nick had this surgery. It's a big one and the recovery is long. But hopefully, it will help her and will ease the pain she is likely having from the dislocated joint. She might need a transfusion (more blood) during the surgery, that's one thing I'm sure they have told her and the other thing - the pain is rough afterwards. But the morphine pump really helps and her best friend will be muscle relaxants. Good luck to your friend - I bet she's happy to have you in her life! :) Donna

[funnylegs4]

Hi, my Nick had this surgery. It's a big one and the recovery is long. But hopefully, it will help her and will ease the pain she is likely having from the dislocated joint. She might need a transfusion (more blood) during the surgery, that's one thing I'm sure they have told her and the other thing - the pain is rough afterwards. But the morphine pump really helps and her best friend will be muscle relaxants. Good luck to your friend - I bet she's happy to have you in her life! :) Donna

The whole reason they suggested the surgery was due to the really bad hip pain she has. I didn't know that about the blood transfusion. No wonder she and her family are so nervous! Thanks.

[jul97]

I don't think type of cp is correlation between the type of cp and surgery such as this. I had bi-lateral femoral osteotomies at 11. They say I have mixed cp. I question if I have cp at all. 33 y/o legal mind, not a lawyer but think I think like one, always trying to dissect my case. If I have cp it's mixed. I was born with hips internally rotated-my whole family has legs slightly internally rotated. But since they don't have neuro damage, and I do-that's the only thing I know for sure my issues stem from neurological damage, I couldn't compensate for how my bones naturally where and the problem was just getting worse. Hence the need for surgery.

If I where worried about post surgical board em-I'd buy a roku!! It's a internet streaming device for your TV, you can watch netflix and other movie channels., I bought myself one last year for xmas. I so LOVE it and get one if my kid/adult was recovering from surgery! All kinds of programming you could keep a five or a 55 y/o amused with one-love it

Also I was doing research for a book I am now trying to publish and found this link of a site that sales products for people in casts and such and thought "I bet some on child neurology would like that site."
http://www.brokenbeauties.com/

Best to your friend!

[funnylegs4]

My friend found out today that her surgery will take place on November 16th. So far she says she is happy about the surgery instead of nervous. I'm glad she feels that way. If it were me I'd be a nervous reck. Her family is still nervous about the surgery though. I'll keep posting updates.

I don't think type of cp is correlation between the type of cp and surgery such as this. I had bi-lateral femoral osteotomies at 11. They say I have mixed cp. I question if I have cp at all. 33 y/o legal mind, not a lawyer but think I think like one, always trying to dissect my case. If I have cp it's mixed.

Some types of CP are so mild that it can be nearly impossible to tell. I can kinda understand your doubts.

[andromeda31]

Hi,

Caitlin had the osteotomy on one of her legs. It was horrible! The best thing we did was rent a hospital bed for her room, that was great! It allowed me to raise and lower her with the touch of a button and I could also raise up the head of her bed (which allowed the 'waste' to not flow back up into the cast). Hope your friend has a better experience....

Lisa O.

[funnylegs4]

Hi,

Caitlin had the osteotomy on one of her legs. It was horrible! The best thing we did was rent a hospital bed for her room, that was great! It allowed me to raise and lower her with the touch of a button and I could also raise up the head of her bed (which allowed the 'waste' to not flow back up into the cast). Hope your friend has a better experience....

Lisa O.

My friend is getting a hospital bed also. She'll probably have to pee in one of those hospital "pee bowl" things. How was it horrible for Caitlin? Painful? Unintended results??? Just curious.

[andromeda31]

Hi!

Well, in hindsight, I wish I would have waited until if/when the hip came out of the socket on it's own to have it done. But we went by what all the doctors were saying (though doing surgeries is the way surgeons make money!), how we should do it 'now' to prevent that scenario from happening. Before, she walked almost independently in a reverse walker. Not now. Though that alone is not the full cause of all her setbacks (shunt issues & seizures contributed). The recovery: we had a bedpan thing (fracture pan I think it was called)...useless. It was much easier to diaper her, we put a size 2 on the inside of cast and a size 6 on the outside. It worked pretty well and she stayed pretty clean (when cast was cut off after many wks). The best advice I remember is that the first week after really sucks and then it is boring which I found to be spot on. She had this done in 2008 so she was 7. It was also January so it made getting around h*ll. Cold, snow, ice....you're in MI, right, so you can imagine?! (I'm in WI). And in the spica cast, impossible to fit in car seat or wear pants, so I used lots of blankets and would recline the van seat a lot and fit her in and buckle up and pray not to get in accident. Though with the cold we left only when absolutely necessary. It would have been nice to be able to take her out in the wheelchair (special rental one) for fresh air or change of scenery but not in the nasty winter though.

AFTER: Her leg that they took a piece of bone out of to rebuilt hip is now .75 inches shorter than other. This sucks. I have to get shoes modified, makes it a challenge to get her real wheelchair seat fitting well, all sorts of stuff like that which I didn't consider when they talked about cutting her thigh bone. I might have chosen cadaver bone I think if I had to choose again. Hard to say. They did imply that her leg would 'catch up' Well, after 4 yrs it is still shorter. The hardware screwing it all back together was very 'prominent' and seemed to cause her pain. They kept saying if she had another surgery, they could take it out as it should be all healed and not necessary to be screwed together. So in 2010 when she had a shunt revision, her leg hardware was removed. One week later her femur fractured where the hardware was. It was disgusting, I thought I would vomit when I saw the xray. It was at a 90 degree angle. Of course when I first brought her in, I got the 'evil eye' from the staff (I kept saying she just had surgery on it as they kept asking if I dropped her)...after they saw the xray, it was clear it had fractured where the screws came out so then everyone was super nice to me (and gave her lots of morphine then for the pain). The really sucky thing? This again, happened in January!!! So for another 2 months she was stuck in the house immobilized. But that time she wore the 'medieval torture device'...a metal frame thing vs spica cast. That was marginally nicer as it was removable for bathing. They said that probably the meds she takes (depakote) caused the bone that formed during original surgery healing was not 'good bone'. Whatever. So now she can never have that hardware out though they did put in a low profile plate this time. It does still stick out oddly at times. Again, first week sucked, then it was boring. How old is your friend? I had 9 weeks of bedrest during one of my pregnancies and it wasn't so bad. For me though, I was happy to lay around and read books & cross stitch all day. And that was before laptops were common so if I had a computer in my lap I really would have been set. For Caitlin, it was harder to entertain. It is hard enough for her to do stuff without being laid up so she watched a LOT of tv. And I had to hand feed her as I didn't want crumbs all over the bed. So that gets old fast! If you have any questions, feel free to ask me, I'm happy to answer anything! :) Good luck to your friend!!

Lisa O.

[Earth Mother 2 Angels]

((((((funnylegs4))))))

I am of no help in this department, as I have no experience. I can only offer that your friend might benefit from having a catheter for a couple of weeks during recovery, rather than sit on a commode (a bedside commode would be preferable to a bed pan, although, again, I'm not familiar with the surgery). Of course, as you know, I'm all about catheters right now so that was my first thought.

Wishing your friend the very best in her surgery and recovery.

Love & Light,

Rose

[funnylegs4]

Hi!

Well, in hindsight, I wish I would have waited until if/when the hip came out of the socket on it's own to have it done. But we went by what all the doctors were saying (though doing surgeries is the way surgeons make money!), how we should do it 'now' to prevent that scenario from happening. Before, she walked almost independently in a reverse walker. Not now. Though that alone is not the full cause of all her setbacks (shunt issues & seizures contributed). The recovery: we had a bedpan thing (fracture pan I think it was called)...useless. It was much easier to diaper her, we put a size 2 on the inside of cast and a size 6 on the outside. It worked pretty well and she stayed pretty clean (when cast was cut off after many wks). The best advice I remember is that the first week after really sucks and then it is boring which I found to be spot on. She had this done in 2008 so she was 7. It was also January so it made getting around h*ll. Cold, snow, ice....you're in MI, right, so you can imagine?! (I'm in WI). And in the spica cast, impossible to fit in car seat or wear pants, so I used lots of blankets and would recline the van seat a lot and fit her in and buckle up and pray not to get in accident. Though with the cold we left only when absolutely necessary. It would have been nice to be able to take her out in the wheelchair (special rental one) for fresh air or change of scenery but not in the nasty winter though.

AFTER: Her leg that they took a piece of bone out of to rebuilt hip is now .75 inches shorter than other. This sucks. I have to get shoes modified, makes it a challenge to get her real wheelchair seat fitting well, all sorts of stuff like that which I didn't consider when they talked about cutting her thigh bone. I might have chosen cadaver bone I think if I had to choose again. Hard to say. They did imply that her leg would 'catch up' Well, after 4 yrs it is still shorter. The hardware screwing it all back together was very 'prominent' and seemed to cause her pain. They kept saying if she had another surgery, they could take it out as it should be all healed and not necessary to be screwed together. So in 2010 when she had a shunt revision, her leg hardware was removed. One week later her femur fractured where the hardware was. It was disgusting, I thought I would vomit when I saw the xray. It was at a 90 degree angle. Of course when I first brought her in, I got the 'evil eye' from the staff (I kept saying she just had surgery on it as they kept asking if I dropped her)...after they saw the xray, it was clear it had fractured where the screws came out so then everyone was super nice to me (and gave her lots of morphine then for the pain). The really sucky thing? This again, happened in January!!! So for another 2 months she was stuck in the house immobilized. But that time she wore the 'medieval torture device'...a metal frame thing vs spica cast. That was marginally nicer as it was removable for bathing. They said that probably the meds she takes (depakote) caused the bone that formed during original surgery healing was not 'good bone'. Whatever. So now she can never have that hardware out though they did put in a low profile plate this time. It does still stick out oddly at times. Again, first week sucked, then it was boring. How old is your friend? I had 9 weeks of bedrest during one of my pregnancies and it wasn't so bad. For me though, I was happy to lay around and read books & cross stitch all day. And that was before laptops were common so if I had a computer in my lap I really would have been set. For Caitlin, it was harder to entertain. It is hard enough for her to do stuff without being laid up so she watched a LOT of tv. And I had to hand feed her as I didn't want crumbs all over the bed. So that gets old fast! If you have any questions, feel free to ask me, I'm happy to answer anything! :) Good luck to your friend!!

Lisa O.

Was Caitlin originally expected to be able to walk again? My friend said it may take up to a year before she can walk unaided again. Yikes! After reading your post I hope my friend doesn't lose the ability to walk completely. Not being able to walk would totally break her heart. She really prides herself in being a "walkie" . My friend is in her early 20s and we live on the east coast which is total H*ll where spasms are concerned. Did they take bone from one of her legs and transfer it to the other leg??

One of my Physical Therapists said surgeons are more concerned with how things will look rather than how they will function after the surgery. My surgeon wanted to do more tendon stretching on the bottom of my feet but after getting a 2nd opinion we realized that would have been a huge mistake movement wise so I know you feel about surgeons.