Hi! I am new in here and was told by my friend that this is a great support group for chiari patients and parents of children with chiari. My son has chiari I, and was diagnosed a year ago. He was getting lots of headaches so we were told to get an MRI and chiari was the culprit. Anyway, his MRI this past month indicated he has a syrinx in his spinal cord, cf fluid collecting. It is a small one, but the doctor feels that it will continue to get larger. He is suggesting 2 options: the decompression surgery, or waiting 6 months for another MRI to see if the fluid becomes greater. He was fabulous and didn’t sway me one way or the other, even though I wish he had. I talked to my pediatrician and she said from the notes it looks like surgery is the best choice. I wanted to know your all thoughts. My son is 8 years old and LOVES sports. I asked the neurosurgeon if the fluid would ever go away without surgery and he said that would be very rare without surgery. So to me it seems like he would need surgery at some point no matter what?? Do we wait or do the surgery?? Thanks for your advice!!
Hi, LAG81! Welcome! It's nice to hear you like your sons doctor! :)
I haven't had a surgery and don't know much about my chiari right now. My opinion on your sons case is this: if the doctor thinks the surgery at this point is a good option, and without it the syrinx would grow, you should go for the surgery. Your son is very young. By waiting he might get some permenent nerve damage that he would have to live with for the rest of his life, unless there is some breakthrough in repairing nervetisue. If by taking the other option he would have to have the surgery anyway, this might be the best time, considering school. Also, you should talk to his teachers, let them know what is coming, so they can help with all school related things. I have read here that children tend to recover faster than grownups. I don't know if that is a fact.
Check out this patient handbook! The site also has a youtube channel with very informative lectures both for patients and healthcare professionals. There are many other useful sources besides these two. Do some research and the decision will come easier!
Best wishes to you and your son,
Thanks Kristine! I will check those links out! Thanks for responding and giving your advice!
My son is 13 years old and had his decompression surgery in December 2015.
His syrinx did not move after the surgery. The actual decompression surgery was a success as his main compliant was that he felt like he could not breathe and that someone was squeezing his throat.
My son is very sporty and devastated he cant play rugby - we live in South Africa where rugby is king.
My suggestion is don't rush things.
I would wait - we rushed as we were scared of the syrinx and it made not difference.
We are waiting another 3 months and praying that it will move and if not then he will have another operation.
Believe me putting my son through surgery was the hardest thing I have ever done.
Take time to let the Chiara shock set in as we also got such a fright. Do research and take all your questions with you.
Sometimes Chiara is not stand alone and you have the operation and is it not a success and then you wonder why - so it is important to research and ask the neurosurgeon if you can talk to his other patients
Keep us posted -