Post surgery question

[Brettp2004]

First time posting on here. My 2 year old has chiari and had decompression surgery almost five weeks ago. She was doing great until about a week or so ago and now some days she just screams all day. This is not her typical self so my question is, what kind of pain was anyone in 5 weeks post op? Unfortunately she cannot communicate her pain. We took her back to neurologist who did a CT and said everything looks good. They gave us lorazpin for muscle spasms which leaves her barely awake for the entire day. Were any of you on pain meds five weeks post op? Any information is greatly appreciated.

[selmaS]

  I agree Feb is too far away and long to wait with a child in pain...keep asking the Drs to get her in sooner as something is wrong.

I would suggest MRI's of her complete spine as those with tethered cord can get worse post op from the decompression surgery.....look for a syrinx in the thoracic and lumbar spine as they do not always check there for those.

And last Ehlers-Danlos as the surgery can cause more instability and pain after the bone gets chipped away....not all NS's look to some of these as a source of pain related to chiari and the surgery.

[Brettp2004]

She has developmental delays, she is almost two and still does not walk, crawl, talk or any other things children her age should do. She has low muscle tone and my wife and I believe she had numbness in her arms (she would bite them a lot and not react to it). The doctors said the cerebral tonsil was a little bigger than they normally see. It extended past the C2 vertebrae. They removed the cerebral tonsil, removed a portion of the C1 vertebrae, enlarged the magnum foramen and did the dura patch. I’m not sure exactly what they used for the patch. I’m not questioning the doctor’s opinions either, the surgery was done at Arkansas Children’s Hospital which is very good children’s hospital and the neurosurgeon does specialize in Chiari and neuro-trama. I’m just curious as to what kind of pain other people had who went through the surgery. Light and sound do not appear to bother her. She has an MRI scheduled for February but that seems so far away when she appears to be in so much pain.

[desertstorm2009]

Hi Brett....
I think you should trust your concern here. She is crying that much for a reason.... Ask your Dr for an MRI of the spine, and an MRA of the brain. Make sure these tests are done on at least a 3 T machine. It's far better in this instance to rule out complications first rather than to assume. Good luck and God bless :-) Lisa

[selmaS]

  May I ask why they felt she needed the surgery? What symptoms did she have pre op?

A CINE MRI is to help determine if there is an obstruction to CSF one should have been done pre op to see if surgery was needed....

Do u know if they did a dura plasty and if so what type of patch was used?

I am not questioning ur Drs, just trying to understand where u all are at this point to offer a suggestion....

Do lights and sound bother her?

[Brettp2004]

They checked for a CSF leak when we took her to the neurologist and did not see one. Today taking a nap seemed to trigger an episode but usually it is from the time she wakes up until she falls asleep for a nap. I know they checked for many different things defore surgery and never gave any other diagnosis. We are very happy with the neurologist and hospital we have been going to. I'm not sure if they've done a CINE MRI, but an MRI is what led to the chiari diagnosis.

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry ur little one is in such agony. It is not easy when they can not tell us what is going on.

She may have a CSF leak at this point post op that could cause that type of reaction....does she seem better when laying down? And worse when upright?

DO u know if related conditions were ruled out b4 surgery, like tethered cord, ehlers-danlos, sleep apnea, ICP, POTS.....?

Have they done a CINE MRI on her?