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Possible Rhizotomy?
Possible Rhizotomy?
11/7/08 1:26 AM
We have a 4 year old little girl with mild CP. She was born full term with no complications other than she was born by C-Section due to breech position. We didn't have a clue anything was wrong until she started pulling herself up around 12 months and her feet just didn't look right. When she was 15 months old she had a brain MRI which showed periventricular leukomalacia. We then started therapy and got her in a pair of SMO's and within a week of getting her braces she began to walk independently. Since then we have done a few rounds of botox and serial casting. We get good range of motion in her heel cords from the botox. Thankfully she is a very smart little girl and has no cognitive delay or arm weakness. She gets around great with and without her braces on she is just a little slower and gets tired easily. She has a difficult time getting up stairs without hanging on. She is not able to run either. This winter she will be having a gait analysis done and then we will go to a spasticity clinic to meet with several surgeons to find out if she is a candidate for a Rhizotomy. I have very mixed feelings about this. I want her to have the surgery if it would help her in the long run however the recovery is difficult and she would have to relearn how to sit up, crawl and walk. I am wondering if there are any of you out there that has had a child have this surgery and did you or did you not see any improvement? Melissa.

Ironically I gave birth to a little boy 2 years ago. I had a horrible pregnancy with him and ended up having him 2 1/2 months early. He weighed 3 pounds 6 oz and is totally normal today. Funny how life works sometimes!!
RE: Possible Rhizotomy?
1/11/09 10:33 PM as a reply to Anonymous.
Melissa,

Hi , how is eveything? My name is Stacey and I have a little boy with CP he had a Rhizotomy done two years ago this last Aug. After the sugery he wanted to get up right away. That was hard to keep him still. But by the time we left the hospital you would never know that he had surgery. Other than he was in a wheel chair only because they are relearning everything. But in a months time you will be amazed at what they have relearned. He had his surgery done in Omaha, NE at Children's Hospital. The pt afterward are awsome and so are the nurses. As a parent we do not regret doing the surgery. The incision on his back has healed very nicely and in Nov. he had surgery to lengthen his ham strings. on both legs. We have survived that.

Our son is six we also have a 15 year old and the youngest is 4. She was our god send. Sometimes we think if it wasn't for her Dean probably would't be were he is today. He tries to keep with her in a big way.

let me know how it goes?
RE: Possible Rhizotomy?
6/2/09 4:24 PM as a reply to Anonymous.
Stacy,

I have a daughter that is now 17, can you tell me what doctor did the Rhizotomy surgery?
RE: Possible Rhizotomy?
6/26/09 1:12 AM as a reply to Anonymous.
Hi,

My daughter who is now 15 years old had a rhizotomy when she was 5 years old. At 5 years old she was not able to sit up independently. About 4 weeks after the surgery I had her on the couch and I was changing her diaper, I was sitting next to her as she lay on the couch, and I turned to the coffee table to get something and out of the corner of my eye I could see her sitting up! I said to myself, "She can't sit up by herself." and when I turned back to her I yelled "SHE IS SITTING UP BY HERSELF!!!!!!!!!!!!"
It was a very scary time, the doctor had told us it could help her or possibly make her worse and we had a hard time coming to a decision but we were very glad that we did. They had told us about a year for recovery and we had told her when she had made it back to where she was before the surgery we would take her to Disney World. By the time a year had come she not only was back to where she was before the surgery but beyond!!!
Three of her limbs are affected but she walks with a walker, she has a one arm drive wheelchair and she is a delight. She is a very healthy, and smart young lady only her mobility has been affected, we are truly blessed to have her.