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major surgery?

Marinewife02
0 Recommendations

My 5 year old son was diagnosed at 7 months with Left Hemi Cp- his dr. has recently reccommended surgery and wants to do a heel cord lengthening- split posterior tendon transfer- as well as a tibial osteotomy, he has never had surgery and there is not much online that isnt in "doctor talk". My husband and I want to do what is best for him but dont want to jump into things. has anyone had this done? we would love to know recovery time-long term effects and any other info you may have- also we are looking to get a second opinion and are willing to travel anywhere to see the best dr. any reccomendations?

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Surgery

3 replies

silentstar

There is a place called Kennedy Krieger which helps children with disabilities. www.kennedykrieger.org

I actually went there as an adult. I was a preemie and have issues with clumsiness, although it's not to the level of CP. However I also have a problem with the tendons? in my legs, which makes it difficult for me to stand with both feet flat on the floor at the same time.

The doctor said that I could have surgery to length them, but he did not recommend it b/c it would involve cutting through muscle, and my problem was not serious enough to justify that. Instead he recommended that I lose weight and work on getting into shape. I still have to do that one :)

They are in Baltimore, MD. I'm sure you could find a doctor who would give you a second opinion. Also if you call, they may be able to refer to you someone closer to where you live, assuming you don't live in MD.

angelam

I know of a girl here in Portland that my nanny used to sit for who got the tendon lengthening surgery at age 5. She can now walk with a walker so it sounds like it helped her. I know nothing of how hard the surgery was though and know they had to go to a doctor in New York to have it done.

alskwirut

Hi. I saw you on a recent post and I want to let you know that my son, Jeff, had heel cord lengthening (tendon lengthening), an alcohol block and quite a few releases (hip aductors, flexors, calves, and thighs) and it was by far, one of THE best decisions we have ever made for him. 6 months ago, his feet were turned and toes pointed up. His knees were "locked" together so terribly bad that we had trouble changing his diaper.

Today, he rides a horse once a week for therapy, can wear shoes and is attempting to step assisted.

I will be glad to give you any and all information on this surgery and even recommend you to a doctor on the front line of this surgery. I've referred another mom on here to the doctor, and her son was accepted as a case, but they are still in the decision making process.

Anything you need, I'm here to talk.

~Aimee

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