Chiari surgery

[Firemedic1135]

Hello I have 13 month old twin girls and the youngest twin has been diagnosed with Chiari , I go to meet with one of the top pediatric  NS for chiari here in Alabama on Tuesday next week, my question is what can my wife and I expect with this surgery on such a young pt.. And is there any advice anyone has?

[selmaS]

  I am so glad to hear she is walking and is keeping up with her twin....

and that u have found a Dr u r comfortable with and all those tests were already done.

I would like to post a Prayer thread for Haleigh if that is ok with u and please post updates on her progress.

[stephncb]

My daughter has Chiari was diagnosed at 14 mths but long story she had it on her MRI at 10.5 mths and they missed it and reviewed again at 14 mths and found it. We will see the neurosurgeon at CIncinnati Childrens on 10/31. She is devolpmentally normal-she is now 18 mths. She does have a hoarse voice so I think she has some swallowing issues. Her Cine MRI shows mild restricted CSF flow and moderate crowding at the cranioal junction. Also one tonsil does come down to the C1. We will see what the neuro surgeon says-my family dr seems to think they will do a wait and see approach opposed to surgery.

[Firemedic1135]

They found the Chiari after doing MRI's checking her bone structure, she has had the sleep apnea study in which they found she has central cyanosis, also she had the barium swallow test and said she is one step above aspirating every time she drinks, but the NS is one of the best for this type of problems and like I think I've mentioned  before we have a meeting on the 2 of October with him to discuss the surgery. Her name is Haleigh and she is very independent she is walking talking her baby talk almost running, she is just like her fraternal twin sister except slightly smaller and has the Chiari.

[selmaS]

  Hi and welcome to the Chiari forum.

I do not know how u came to notice there was a need to do testing to be able to find her Chiari...but, I hope ur NS is also testing her for all the related issues, like sleep apnea, syrinx, disk issues, tethered cord, ICP, POTS, and ehlers-danlos...as it can affect how she feels and heals.

Plus, do u know which surgery they plan to do? Sometimes with little ones they do a less invasive decompression, and they can be a temp fix with a redo need later of the regular decompression....

Children this age have had the surgery and done well, but like with adults we r all diff in how we handle pain and our body reacts to the surgery itself.

  Be patient...and expect her to not feel well afterward, but once she adjusts to the meds and is able to get up and move, is she walking? they will want her to move so as not to get stiff...this may need to be out side manual movement with the help of u if she is not that mobile....

Some children with Chiari can have some development delays...so again not sure how u came to the dx and if this may be an issue for her.

Wishing ur family and ur DD and the best with her surgery...I will post a Prayer thread for her. May I ask her first name?