Chiari Online Support Group

2 1/2 yr old grandson can't swallow. Help please

Hello,

I’ve posted for my grandson who recently had his decompression surgery (last Monday). Since then he has not been able to eat anything for the most part. He did eat a tiny bit a day or so after the surgery, but for the past few days he hasn’t been able to eat anything. He’ll try to eat, but then as he tries to swallow…he can’t, so he’ll take the food out of his mouth. All he’s been having is a protein drink in his bottle and some water and other drinks from his sippy cup. No food. His NS just now advised my daughter (Mason’s mom). Doctor says this is likely caused by the Chiari and that there are still tonsils left back there. He said that if he can’t fix that, Mason will have to get a feeding tube! What the HECK is going on? Mason was never like this before! Mason is extremely healthy aside from this newly diagnosed Chiari and surgery! We are completely at a loss and are extremely shocked. Lisa (Mason’s mom) told the doctor that Mason drinks his protein shakes. Doctor said that wasn’t a meal replacement. I’m asking/begging for info on any good “meal replacement drink” Mason can have. I am losing my mind…I can’t even imagine how my daughter and son-in-law are feeling. Do we go see another doctor? Will another doctor even see Mason since he recently had surgery for this last week? I know I have more to ask all of you, but i’m so upset that I can’t even type/talk right now…

Sammy

So sorry to hear of Mason’s issues.

It sounds like he is having difficulty post-operatively with edema(swelling). Maximal swelling after surgery/trauma occurs 3-5 days after insult. Hopefully, Mason is improving at this point.

2 1/2 is a very young age for decompression. While it is too late to go back, get clarification from his surgeon what is the likelihood that a second operation will fix his swallowing issues and what his risk is of needing another operation for his Chiari in the future.

Several years ago, Boston Children’s Hospital presented their data, in which 50% of children they decompressed <5 years of age required a redo decompression in the future. Each surgeon is different but that is an important discussion to have(ideally before any operation).

You certainly want to take care of any neurological cause of his feeding issues prior to committing him to a surgical feeding tube, e.g. gastrostomy. However, time may help and a temporary feeding tube, e.g. naso-gastric tube, may give him a few weeks to recover.

It would be exceedingly difficult to get another neurosurgical opinion on an in-patient(and out-patient consults typically take months).

If you are in North America, make sure his neurosurgeon is a board-certified pediatric neurosurgeon(the list can be found at www.abpns.org ). It never hurts to ask for another opinion.

I hope these thoughts have been of some assistance.

Call Cornell University Neurosurgeon Dr. Greenfield. We met with Dr. Greenfield and he was great. We are currently monitoring my son’s Chiari. I hope this information is useful.

God Bless.