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Old 07-30-2006, 06:36 AM   #1
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Pinkmom HB User
Gastroc and Hamstring Surgery for Mild CP

My daughter, who is 13, is scheduled for surgery at Dupont Hospital in 3 weeks for gastroc and hamstring lengthening. We are very nervous about the surgery. We are very fortunate that our daughter has a very very mild case of CP which has affected her left side. So mild... that it is almost unnoticeable. I am having a difficult time finding support/info on cases like hers. Most of her problem is her left foot. Her foot is 1 size smaller in length and turns in slightly. Her tightness is in her calf and foot although she has a fair amount of control. We just learned that her leg is about 1/4" shorter than the right. She is very active and her gait is ever so slightly irregular. She plays basketball, baseball etc. The doctor claims that this procedure will give her that extra range that she needs as well as help correct the curvature in her foot. We are concerned that she will develop a more uncomfortable walk. We are concerned that this surgery will make things worse. Looking forward to hearing from someone. Thx!

 
Old 07-30-2006, 08:02 AM   #2
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Re: Gastroc and Hamstring Surgery for Mild CP

Hello Pinkmom,

Our daughter is 11 now, when she was about 4 she had the hamstring surgery. It was a fairly easy surgery compared to most that she has had. Our daughter is completely non mobile, but she is able to take a few steps in her walker etc. The one thing I remember was it seemed to take a while to get the strength back after the surgery. Megan is able to stand with assistance and I just remember it taking awhile for her to be able to stand again. Hopefully someone will come along and be able to answer your questions as far as mobility and walking.....
I know she was in long leg casts for a few weeks also.
The surgery itself was very easy for her, she sailed right thru it.
Good Luck
Tracy
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Married 18 yrs, 3 kiddos, 16, 11 and 3...

Last edited by jomeja; 07-30-2006 at 08:03 AM.

 
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Old 07-30-2006, 08:31 AM   #3
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Steffers2318 HB User
Re: Gastroc and Hamstring Surgery for Mild CP

Maybe you would feel more comfortable if you got a second opinion? Just to see if the second doctor says the same thing?

 
Old 07-30-2006, 10:31 AM   #4
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Re: Gastroc and Hamstring Surgery for Mild CP

Your daughter sounds a lot like me. I have quad CP, but my right side is more affected. My right foot is 1 1/2 sizes smaller, it turns in more than the left, and I can't really move it due to spasticity in the ankle... plus I had a SPLATT and a few other things done on that foot back in the day.

I had bilateral hamstring lengthening at 13 (7 years ago). It was a REALLY easy surgey, besides being half covered in plaster in the middle of summer! I would probably do it again if I had the choice to do things over, but I might have waited a few years. I know if I hadn't had it done I probably wouldn't be able to walk right now, but I lost so much strength after the surgery that never returned, and that really sucked. I used to be able to skateboard and surf a little, and I definitely can't do that anymore. I've also not ridden a bike since a few months after my surgery, but that is partly because I got into a nasty accident during PT. I could probably still ride if I tried.

I think I'm just generally slower, less coordinated and not as strong after the surgery, but keep in mind this doesn't happen to everyone!
Some positives are that I can straighten my legs completely, even though they have started to contract again. I couldn't straighten them before. Also, my walk is a lot smoother except for a slight increase in the contorsion of my right femur. Furthermore, once I got used to my new set of legs so to speak, I started falling a LOT less. Pre surgery I probably fell anywhere from 5-10 times a day. Post surgery was hard to deal with being so loose, but now I don't even fall every day!

Long story short- I still would have done it, I just wish someone had told me about the possibility of weakness instead of everyone (parents and doctors) making it sound like it would be some magic bullet cure all for my problems.

 
Old 07-30-2006, 06:35 PM   #5
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Re: Gastroc and Hamstring Surgery for Mild CP

Thanks to everyone for replying! I forgot to mention that I did go for a second opinion and the doctor at CHOP thought the surgery would benefit my daughter. She also had a gait analysis completed at Dupont where they placed electronic probes on her muscles and had her run, walk etc. In the calf muscle they injected/inserted a wire that tested the strength in her muscle. Has anyone had this done?? When we met with the physical therapist, he told us that this surgery could do nothing but benefit her and he recommended it. When I asked what the worse thing that could happen... all three said that the worse thing would be that nothing changed but since she has so much control already... this should work great. So... we have three GOs so far... how come we still don't feel right???

 
Old 08-07-2006, 02:29 PM   #6
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Re: Gastroc and Hamstring Surgery for Mild CP

My son was 4 when he had his bilateral tendon lengthening. It was a horrible expirence for us with a very long and difficult recovery. He had just begun standing and taking steps when we had the surgery done. He had major muscle spasms during the recovery. After the 10 weeks in full length casts, he was unwilling to even bare weight. It took about 8 months to get him back to even where he was pre-surgery. He is now almost 9 years old and needs more intervention. We are currently trying a dynasplint post Botox to achieve dorsiflexion. I will mention that he also had lengthening and reroutment surgeries on his arm to decrease contractures, and we ran into the same painful recovery process as we did with the legs, so perhaps it is just how his body "reacts"

He has spastic triplegia and is ambulatory with assistance. He typically uses a reverse walker (we are trying really hard to transition to an arm crutch) for short distances and a wheelchair for long distances.

 
Old 08-11-2006, 07:53 AM   #7
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joromo703 HB User
Re: Gastroc and Hamstring Surgery for Mild CP

Just wondering: Have you ever considered SDR for your daughter? Our son has a very mild case as well, and we are hoping to avoid the type of surgery you are contemplating by going with SDR.

This is a bit scary for us because our son is mild and SDR could make him worse than he is, but we want to avoid the lengthening surgery because it seems like some people have long recovery times and need the surgery multiple times.

I am NOT saying you SHOULD consider SDR, I am just wondering if you have. Some people say it is ridiculous to consider SDR in mild cases, but others point to great results. We are going out to Gillette in St. Paul to have our son evaluated for it next February.

Thanks.

 
Old 09-07-2007, 07:38 AM   #8
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Re: Gastroc and Hamstring Surgery for Mild CP

Hi Pinkmom - Not sure if you'[re still checking this board, but my son is 11, with mild Spastic Diplegia, independent walker, etc. and is about to go through the same surgery (gastrocs and hamstring lengthening). I'm surious as to how it went for your daughter? What was the surgery & recovery like and how is she now?

Thanks!

Bill

 
Old 09-08-2007, 03:33 AM   #9
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Re: Gastroc and Hamstring Surgery for Mild CP

If you are feeling uncomfortable, get yet another opinion. Be sure you get it at a medical facility that has no ties to the place where you got the first opinion, since doctors hate to contradict their colleagues. I'm a little surprised they are telling you to get this surgery when your daughter is this young. Because the surgery weakens the muscles permanently, they usually wait until a kid is well into their teen growth spurt, if they can. Otherwise, you run the risk of having them tighten up more as they grow, and yet you can't do the surgery a second time without risking their becoming too weak to be functional.
On the positive side, our 15 year old son (spastic diplegia, walks with crutches) had his hamstrings lengthened last summer and it was a big help. It straightened his legs out completely and got him out of AFOs. The surgery itself was pretty easy, but be prepared for it to take a long time (nearly a year) to recover your strength and it doesn't all come back. You gain some straightness, but lose some strength.
If you are uncomfortable, wait. Our son's doctor said that you can always do these surgeries later.

 
Old 09-10-2007, 06:26 AM   #10
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wlmar HB User
Re: Gastroc and Hamstring Surgery for Mild CP

vermontcp -

I think Pinkmom's daughter's surgery was well over a year ago. My son, who is almost 12 is about to go through the same sugery and I was looking to see how it went for her daughter...

Best,

Bill

 
Old 09-12-2007, 07:26 PM   #11
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Exclamation Re: Gastroc and Hamstring Surgery for Mild CP

I think Pinkmom's surgery was a while back. wlmar, I have a 16 year old who went through the gastroc releases, hamstring lengthenings, and more. The main thing I would caution you to be aware of is the pain. The docs down at AI are wonderful, but didn't prepare me for my daughter's pain immediately following her first surgery (she was 4 1/2). The second set of releases was done with an osteotomy I think it is called, a really major surgery of the femur which rotates the bone to compensate for foot inturning. Both surgeries resulted in amazing absolutely amazing increases in function and appearance. At four she began to walk with her heels touching the ground and developed a spunky attitude and told us to forget about her ever wearing MAFOs again. After all, why had she gone through all that if she still had to wear MAFOs. The second surgery at age 10 corrected her inturning legs and she was able to ride a bike. And being prepared for the pain (both of us at that age) made the difficulty seem like it had an end.

Good luck with your son's surgery. I wonder if anyone can talk to me about the emotional difficulties of adolescence for kids with milder CP. She has really given up on a lot it seems and hates modifications at school. She is a twin and her twin has her own set of special needs so my life has been so complicated I fear I have not given her all the emotional support she needs though I have tried to be honest and caring and she does know that. I worry about her being able to live independently. Yes she walks, talks, reads, etc., but she is pretty clumbsy with her hands, has had enough trouble with learning to drive (adaptive lessons with left foot gas pedal), takes an eternity to do anything.

 
Old 09-13-2007, 06:49 AM   #12
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open_the_door HB User
Re: Gastroc and Hamstring Surgery for Mild CP

Quote:
Originally Posted by elfie1 View Post
I think Pinkmom's surgery was a while back. wlmar, I have a 16 year old who went through the gastroc releases, hamstring lengthenings, and more. The main thing I would caution you to be aware of is the pain. The docs down at AI are wonderful, but didn't prepare me for my daughter's pain immediately following her first surgery (she was 4 1/2). The second set of releases was done with an osteotomy I think it is called, a really major surgery of the femur which rotates the bone to compensate for foot inturning. Both surgeries resulted in amazing absolutely amazing increases in function and appearance. At four she began to walk with her heels touching the ground and developed a spunky attitude and told us to forget about her ever wearing MAFOs again. After all, why had she gone through all that if she still had to wear MAFOs. The second surgery at age 10 corrected her inturning legs and she was able to ride a bike. And being prepared for the pain (both of us at that age) made the difficulty seem like it had an end.

Good luck with your son's surgery. I wonder if anyone can talk to me about the emotional difficulties of adolescence for kids with milder CP. She has really given up on a lot it seems and hates modifications at school. She is a twin and her twin has her own set of special needs so my life has been so complicated I fear I have not given her all the emotional support she needs though I have tried to be honest and caring and she does know that. I worry about her being able to live independently. Yes she walks, talks, reads, etc., but she is pretty clumbsy with her hands, has had enough trouble with learning to drive (adaptive lessons with left foot gas pedal), takes an eternity to do anything.
My son, also a twin, is now 3 years old. He is finally using a walker. His diagnosis is CP Diplegia, but it is more quad because all limbs are involved. His left side more than his right. He can feed himself, but I help him alot because of the mess and time constraints. He mainly drinks from a bottle because I need to push fluids so he doesn't get constipated, but he will drink with a straw too. I want to get him to use a sippy cup. I'm not sure if he will need all of these surgeries. I'm really hoping not because he is getting botox every three months, has p.t. twice a week, o.t. once a week and of course speech now. I work so hard with him. His twin doesn't have cp, but just delayed in his speech. I know it is important to work with him as much as possible because he is young, and the muscles are easier to manipulate. I do things with the older kids. It is just so hard because hubby is deployed again. Where there is a will, there is a way. You have done it, and so have so many other great parents on this message board or throughout the world. Everyday helping their loved one progress. I'm so glad I found this message board. I can't say it enough. Thankssssss for reading........

 
Old 09-13-2007, 08:28 PM   #13
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Re: Gastroc and Hamstring Surgery for Mild CP

"His diagnosis is CP Diplegia, but it is more quad because all limbs are involved. His left side more than his right."

That sounds like me except I'm diagnosed quad and I think it's more like diplegia. All my limbs are involved, one side more than the other... but in diplegia all four limbs are involved, people just don't tend to notice the arms

 
Old 09-28-2007, 06:39 PM   #14
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Re: Gastroc and Hamstring Surgery for Mild CP

Hi I am new to the forum and i certainly have my own questions but this thread caught my eye as I had this surgery over 25 yrs ago at Dupont and the results were very dramatic. I would do it again. I have mild CP

 
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