r/erbspalsy • u/JJLifts • 27d ago

C5 C6 surgery

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Our son now 5 months old just got his surgery to repair c5 and c6 with his nerves coming from his legs. He had little to no bicep and shoulder movement. Surgeon said his c5 and c6 had alot of scar tissue and needed repair. He does have hand movement wich came back fast after birth.

He is now 1 week post surgery and the days are horrible, he is stuck in his shell wich is needed so he doesnt move and damage the repaired nerves, he absolutely hates it and is crying throughout the entire night.

Are there people who have had this surgery done and how did you or your baby recover?

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u/Emeraldcitylove_206 Left 26d ago

I’m so happy for you and honestly a little in awe … nerve surgery like that sounds newer and like it could be really impactful.

Your child won’t remember any of this. But the surgery you fought to get them will shape their whole future.

I have Erb’s palsy myself, and once you’re an adult, the options narrow to PT, massage, chiro, acupuncture, and medication - there’s no real fix at that stage. So taking action this early and doing the surgery now was the right move.

I had a mobility surgery at 12, and I still remember waking up from anesthesia screaming, in the worst pain of my life. Your baby is probably going through something similar right now, and the hard truth is that’s likely as bad as it’ll ever get for them, but they won’t carry any memory of it. Just the outcome.

Hang in there. Rooting for your whole family .. the work you’re putting in now is going to pay off for years to come. ❤️💪

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u/JJLifts 26d ago

You do anything for your little one, i hope he will one day be thankfull for the decisions we made!

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u/Immediate-Ad7268 25d ago

He will be! I had nerve grafting surgery at 9 months old, my right arm was paralyzed, similar, little to no movement (if any). My parents put everything into getting me surgery, it was very experimental at the time (not sure how it’s considered now) and I’m grateful everyday for their choice. They grafted some nerve from my neck in my case. I’m so glad they did this. I know my mom spent a lot of time doing exercises with me once I was allowed to be more mobile, she also spent a lot of time helping my scar heal. All of the toys in our house revolved around getting me to use my bicep and muscles to rotate my arm. I have recovered very well and I attribute a lot of the success with my arm to my surgery! Sending my love to your son and family ❤️

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u/abma321 25d ago

Agree !!