tendon release surgery

My 2 1/2 yr old son has to have adductor tendon release surgery on Monday for his cerebral palsy because his hips are dislocating. Can anyone tell us what to expect as far as his ability to sit, wear shorts, pain level, be in his carseat, etc?? Please help we have so many questions and no answers.

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I had that done on both legs when I was 10 and 1/2. I was in a partial body cast 6 weeks of summer in '85. I had it done to loosen my gait I believe. My parents and I had to wait around the hospital all day to find out if only one leg was going to be done or if both were.

I remember waking up from surgery and wanting both my parents. That night in the hospital I woke up in such severe pain. I woke my dad up screamimng. I remember none of the drugs the gave for the pain helped. My mom stayed with me the next night. The pain went away after 2 and 1/2 to 3 days. The muscles want to move back their original space.

I rode home in the back of station wagon. I couldn't sit up like normal. So I laid down in the back.

My mom adjusted all my shorts with velcro on both sides so I could wear them. I could only sit up part way do to the partial body cast. I don't know about the car seat. My parents got me a wheelchair when I went outside.

I sponge bathed it for those 6 weeks and went to the bathroom in small commode-that fit near hole they left down their.

After the partial body cast was taken off I had to have a brace made. It looked a like the partial body cast. I remember wearing it 6 months to year after surgery. I don't know what your Dr has planned but that's what my Dr did.

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My daughter had the surgery last summer. She went in on May 27th and was home by September 6th. It is a long recovery but well worth it. Before the surgery, my daughter's legs were so tight that they were crossed and it was painful for her to be put in a stander. I had a very difficult time diapering her and she couldn't sit well on the floor, even with support.

We were so scared with the surgery, but her surgeon was amazing. She was in surgery for 7 hours and had the surgery at Sick Kids hospital in Toronto. She was there for a week and was moved to Bloorview Kids Rehab in Toronto for rehabilitation because we could not take care of her at home. She adjusted well there. Kids are very resilient and, believe it or not, they get used to EVERYTHING!

Now, Maya is able to sit on the floor will very little support because her legs go so wide now. It is much easier to change her diaper. She is no longer in paid when she stands (although it will never be easy for her, and it won't help her to walk). Her scars still bother her on her hips. I think they are very itchy. But, all in all, it was definitely the right thing to do for her. She was 5 when she had her surgery. It is now post-surgery one year and we are just glad that we are on this side of last year!

Good luck to you and if you have any further questions, please contact me.

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Also, she does not need Botox anymore because her tendons are very loose from the tendon release. It is very easy to put her in her carseat now. She was on pain medication for quite a while, but was able to get off most by the time she came home. The worst part was not having her at home with her family.

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Ben's surgery was 3 years ago, just before his 9th birthday. Mostly, it was a good decision.

He had the Achilles tendon, knee tendons and groin tendons lengthened. The surgery only took a couple of hours. Once he was recovered from the anesthesia we went home. He was in two full leg casts with a rod between to hold his legs open. We had to wear them 3 weeks.

The surgery really took care of the toe pointing and leg crossing. It went a little too far on the knees, they bend back a little.

Since we were only in the casts 3 weeks, I let him wear super long shirts and no underwear on days we were home - which was nearly all of the 3 weeks.

Good Luck with the decisions.

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Thanks for sharing your personal stories. We are going to the hospital Monday am. We are hoping it will help with the scissoring and toe pointing. He also just got his AFOs. We will probably do the diapering. Still not sure about shorts but may use the velcro idea. Hopeful about the carseat because we have to get him home from the hospital.

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I forgot to ask, were your AFO's custom made or off the shelf?

Ben's have always been custom made, but still we've had a few problems. When he was small one set did allow the heel to rise up, no fun at all!

The one's that worked best for him have plastic pieces that go over the top of the foot and a built up side along the big toe.

Every time you take the AFO's off, check for red spots. Not the sock imprint kind of red spot we all get, the red you are looking for is browner, more like an older bruise. If you see any of these, get the braces adjusted within a week, the sooner the better.

On the subject of socks, lightweight with heels. Girls dress socks are great. At first glance tube socks look great because they are soft. They are too thick, bunch at the ankle, and cause the braces to fit poorly which can lead to the dreaded red spots.

Remember to wash the AFO's every week with rubbing alcohol, it helps keep down foot fungus.

Answer 2 and Keeping Pace shoes are good ones for using with AFO's. They have extra space inside so you don't have to buy a shoe two or more sizes too large for your child. Shoes too long can lead to more walking problems.

The problem with the car seat may not be your son's hips. Depending on what cast arrangement he has, his hips may be free but the size of the casts themselves may make his legs too large for the car seat. You may need to just put him in a regular seat and pray nothing happens on the way home.

I wonder if you'd call the police if they'd have any suggestions - an escort maybe? :o)

If you have any more questions about AFO's, I'll try to help.

One more thing, watch for growth. Braces get too small very quickly and cause damage if worn too small.

Good Luck on Monday,
Faith

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As I stated before in my post. I had to ride home in the back of borrowed station wagon. I couldn't fit a normal seat. I laid down in back w/o a pillow behind my head. So my head was bobbling the whole way home-about 45 min to an hour. I lived in Highland, UT and had my surgery at Primary Children's Hospital in SLC, UT.

I could only sit up part way after the surgery and that in a wheelchair or on the couch with pillows. My mom had to lift me every where I went for those 6 weeks. I had about 20 lbs of plaster cast on me. I had my scars for several years but they slowly went away after time.

I had a awesome Drthat performed my surgery. His name was Sherman Coleman. He just past away a couple years ago. I had known him since I was real little. I'm now in my mid thirties.

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Emilyring,

You'll be as glad as I was to find out they use fiberglass casts now. I was sure Ben would have the 20 pounds of plaster, too. I was shocked at how light the casts were and greatly relieved!

How have the years treated you since the surgery? Any lingering problems or great benefits?

One of the reasons I fought so hard to avoid it with Ben is I didn't want to find out 20 years from now I made a horrible decision. In the end, it was unavoidable. So it had to be the right decision.

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HI Vickis3ms,
I am so glad you talking the tendon release surgery. We are waiting Date for my Grandson surgery . But he 10 year old . This has given me head up what are looking . Thank all of you

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This really has been so helpful. His AFOs are custom and we just picked them up yesterday. Thanks for all the good recommendations. We are so lucky about the fiberglass rather than plaster. We will have to wait and see about the carseat.

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I believe there are special carseats for special needs children with spica casts. At least there were years ago when I worked at our local children's hospital. You may ask in the hospital if they know of one they've used for other children to get them home safely. Good luck.

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Have you looked into Dorsal Rhizotomy surgery may be a better option ask your doctor.

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Good luck with your surgery today. My daughter had this done 10 years ago at the age of 5. It was 6 weeks in a half body cast. (FYI: I bought depends pads and put them up under her diaper because they hug and fit right to the body. This was awesome! 6 weeks later when the cast was removed no smells or sores from being wet. She used a bed pan for bowel movements.)
Also we move a single bed into our living room so that she would be with us and not lay up in her room. And when the cast was in itchy we use a blow dryer on cool right up against the cast. As far a clothes go around the cast we bought those sweat pants that snap all the way down the sides which made it easier to cut the waist and add a tie string . Just buy them in a bigger size.
The recovery was long and was a lot of work. but isn't everything?.... It did help her in everyday movement.
Be sure to get some vitamin E oil after cast comes off and rub it on those scares daily it will help and the more you rub them the more it helps break down the scare tissue.

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Spottswood,

I think that my parents made the right decision in long run. They are still some of biggest champions to this point. Although, my mom sees things now that she wishes could have done differently. Like making me do my PT harder.

I have been walking with a cane since the 5th grade-balance issues. I walked with walker up to that point. The surgery did help. I still go PT to maintain-a standing appt. I go in once a week. I have also found a Yoga DVD for the Physically Challenged that helps me as well.

I am married now. No kids or pets. I have almost 7 nephews and nieces that I claim like they were my own.

I have been working since I was in my early 20s. Mainly call centers because I'm unable to stand for long periods of time. Sit down jobs are best.

I did graduate from HS and College. I graduated with an AAS and 2 certificates. I went back to school 5 years ago to update my skills and earned 4 certificates.

I also don't drive due my CP and my Epilepsy. I am also legally blind in my left eye. I rely on the Paratransit system-here where I live (Utah). My hubby, family and friends to get around.

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Emilyring,

I'm so proud of all you've accomplished! That's the kind of future I hope my Ben will have - something great to do and people to share it with.

Vickies3ms,

I hope all went well with the surgery today. I see one post asked if you had considered Dorsal Rhizotomy. It was suggested for Ben, but my favorite neurologist had this to say about it "it's permanent, you know." So research that VERY carefully before considering it.

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When I was 16 that might have been my last surgery-the Dorsal Rhizotomy. But when I went in to be evaluated they told me I needed to have 6 months of PT and then come back. I then started to go back PT at that point and really haven't stopped. I've now known that PT for almost 20 years.

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Michael is doing well. In the hospital for the night but hopefully home tomorrow. Turns out he did not have hip spica cast only thigh to toes bilaterally. So will be able to use our regular carseat. However will definitely take the suggestion about cutting the outer seam of sweat pants and using velcro. He likes to wear pants even though he is just two.

I am definitely inspired by your stories. Michael has a great vocabulary and talks pretty well for his age. He may not be able to run or possibly even not walk, but we still see him with a very full future.

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That's just what my mom did. I remember she also did it to certain # of women's underwear so that they would fit over the cast. I'm glad that the suggestion helped some one else.

I remember it took me the rest of the summer to recover from the surgery. It was hard to get up from the couch and other chairs w/o holding on to something first. My legs were unsteady. I hadn't used them in about 6 weeks.

I was only in the hospital for about 3 days if i remember correctly. I was in pain for most of those days because the muscles wanted to move back to original place.

I didn't walk until I was 3. I have walked with a walker and now a cane.

I'm glad my story helped you.

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Just thought I would post an update. Michael is doing pretty well. He is 3 wks post op and having no pain. He has figured out a way to roll over with the casts going from hip to thigh on both legs with a bar between them. He is actually sitting better and more stable than ever probably because he is heavier and has his weight more evenly distributed. This has actually helped his tone already as he is much more likely to open his right hand than to keep it clenched. Hoping for lasting effects!!

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Hi all
My grandson is going to have the adductor tendon release . sometime this next month .We needed a release from one his Dr. He is going have
the AFO for legs after the surgery. They would like for him to go back to school in one week . Has anyone send their child back to school after the surgery. His Dad and I are think about thinking maybe a half days. The Dr said it Ok to sent back to school. Dad not happy with.

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