friend about to have a hip surgery

[andromeda31]

Hi!

Well, I don't really remember them talking about walking at all...like you said, they did seem more concerned with how things look vs function. Even now, we go every six months and they take xrays and then tell me how good the hip looks. I just say whatever, it still looks weird to me and it bothers C yet so I would rate the surgery as a 'fail'. But I am too nice and just think it in my head and never say anything out loud. Caitlin only needed it done on the left side so they cut that femur and used it in her left hip. I was talking with her PT on thursday about this and she said aside from Caitlin, she has only heard/seen good results from it....so hopefully your friend with be one with good results too!! I've just learned to be much more conservative about the surgeries. A yr ago, they wanted to do spinal fusion on C...and boy did that ever upset me! But we did a lot of research and tried a different chiropractor and have been able to improve her curve and avoid the surgery completely! Though chiropractic probably wouldn't do much for hip issues. I just wish we had not been so pressured into rushing to have it done. I've learned to question more over the years!! Will your friend be in a spica cast? I can't imagine being an adult and stuck in one of those. :( Hopefully your friend has some great support to care for her after her surgery!

Lisa O.

[jul97]

I am glad they told your friend it will take a year to completely get back on her feet!!! I forget what they told us but I had it done in may and it was a complete blow to still need a WC in sept to go back to school! A year sounds about right from start to finish mobility wise. If they had told us look it may take a whole year to completely recover-at least I'd of been prepared and not felt what went wrong, why am I still having trouble?

Long view-no clue if I am better/worse of from having it done. I just don't know...

Pain after-it was there. I remember when I needed to go to the bathroom holding it until I HAD to tell mom I needed to go cause it hurt to move that much..But I wouldn't say agony.

My CP isn't mild that's not why I have doubts.

[funnylegs4]

Will your friend be in a spica cast? I can't imagine being an adult and stuck in one of those. :( Hopefully your friend has some great support to care for her after her surgery!

I have no idea. I had a spica for tendon stretching but when I had it it was called an "A framed" cast. I don't get why they call it a spica now. Being casted like that gave me a really funny looking gait that took years to get rid of. Wish they had let me do simple PT while still in the cast. Might have prevented the odd gait. I told my friend to do simple PT in the cast if possible since they seem to offer that now.

My CP isn't mild that's not why I have doubts.

So why do you have doubts?(other than your legal mind)

[jul97]

cause I also have been Dxed with Dystonia, that is a separate movement disorder-not a type of CP, as many think. So what's causing what? I still believe I could only have dystonia. I have a bunch of different theories!!

[andromeda31]

yes, both times we did PT while recovering (in cast). I was glad for it!

Lisa O.

[jul97]

I just don't know everything about this-I am not a orthopedist. But it seems weird that 20 yrs ago my doctor told us using hardware is the new way; it's better because therapy can start way sooner and recovery is quicker. Yet 20 years later-I hear a lot of kids are still being casted. Curios as to why.

-random thought, not saying any opinion, just wondering.

[andromeda31]

I think C was casted originally to immobilize her hip while that healed. The second time it was only her femur screwed back together so she got the removable medieval torture frame instead. But I only know our personal history not what is generally done. :) As much as I hated it, it was nicer to be able to take it off for bathing vs the spica cast. She did get a few pressure sores from her spica cast too, nothing like that from the frame thing.

Lisa O.

[funnylegs4]

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cause I also have been Dxed with Dystonia, that is a separate movement disorder-not a type of CP, as many think. So what's causing what? I still believe I could only have dystonia. I have a bunch of different theories!!

Oh! Now I see why you have doubts. There are cases of CP and Dystonia occurring together. I read a blog about an 8 year old who has both. Maybe a brain scan could tell you which one you have or if you have both? Is Dystonia caused by brain damage or something else???? I never really understood what Dystonia is but I know it causes spasticity.

[jul97]

It's a movement disorder in the same familly as parkinson's but not as bad and not progressive, meaning dystonia CAN get worse whereas parkinson's WILL get worse. No one know's exactly what cause's dystonia. It can be genetic but it doesn't have to be. Meaning there are cases that just happen. Incidents of Dystonia are more common in the CP population than the average population.

Last year I had a round of testing, it didn't lead anywhere still have questions, still looking for a way to recover function. I am back at baseline, meaning I am in a good period. When symptoms get bad again-we'll see more doctors and maybe more answers.

Right now I am just living life..

[funnylegs4]

My friend found out her surgery will be a day earlier than expected. She has no idea why the date was changed like that.

Will your friend be in a spica cast?

She says "I'll know what kind of cast when I have wake up!" LOL!

Incidents of Dystonia are more common in the CP population than the average population.

Last year I had a round of testing, it didn't lead anywhere still have questions, still looking for a way to recover function. I am back at baseline, meaning I am in a good period. When symptoms get bad again-we'll see more doctors and maybe more answers.

Very interesting. I hope you get some answers and can recover function in the future. I have seen a lot of improvements in my CP symptoms so I think you can also have improvements.