Surgery on tethered spinal cord keeps being cancelled

Posted by elcee2 @elcee2, Sep 21 10:56am

Seeking advice on what to do when granddaughter’s surgery, which was best handled at 3months keeps getting cancelled. Can we ask for a referral to another physician at another hospital?

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Lisa Lucier, Moderator | @lisalucier | Sep 21 10:04pm

Welcome to Mayo Clinic Connect. I can hear the disappointment in your words about your granddaughter's surgery repeatedly getting cancelled.

Has the hospital given you a reason for the cancellation? If so, what did they say?

elcee2 | @elcee2 | Sep 23 6:30pm

Found another surgeon to take her case thanks

Lisa Lucier, Moderator | @lisalucier | Sep 25 2:06pm

In reply to @elcee2 "Found another surgeon to take her case thanks" + (show)

@elcee2 - my own son, now 19 and in college, was born with a tethered spinal cord. I was unfamiliar with this condition until his diagnosis. It was suspected as a possibility at birth due to a sacral dimple, but imaging at that age (non-MRI) didn't go well. He was too wiggly.

So, they had us bring him back for an MRI at 3 months, at which time he'd developed an angry hemangioma around the dimple. The MRI found that he did have a tethered spinal cord.

He had surgery shortly afterward, and I had so much confidence in the pediatric neurosurgeon that I was not worried.

The surgeon said that he would be perfectly normal after healing from the surgery. It didn't quite turn out that way in the near term. He ended up being quite delayed in hitting milestones in speech and in walking, key grasping (like with a piece of cereal on his high chair tray), accepting having his teeth brushed, etc.

We ended up calling the school district, which our pediatrician suggested, and he was tested and put in various PT, OT and speech until he was 4.

After that, it was all normal and smooth sailing. So thankful.

Hoping for a great outcome for your granddaughter.