My daughter has been recently diagnosed with Chiari with syrinx. We haven't gotten in to see the neurosurgeon yet (our appointment was postponed) but I'm assuming that decompression is going to be recommended since she has a syrinx. (At least, that's the impression I've gotten: that surgery is always recommended in cases of syrinx? She doesn't have any other symptoms that are affecting her quality of life -- she only has a very mild scoliosis (18 degrees) . . . but I'm getting the impression that surgery is needed for syrinx, regardless of whether or not there are symptoms affecting quality of life. ??)
Anyway, my main question is: I keep reading about how long and difficult the recovery from decompression is, and I'm wondering what sort of recovery experience we should expect. I've had surgeries myself, but never anything that took months-to-years to recover from! What kind of recovery symptoms are we talking about that persist for months post surgery? I'm reading about a lot of severe post-op pain, and getting nervous about my 11-year-old dealing with that. I'm just trying to figure out what we're dealing with here. . .
Thanks for any help!
-- Michele
Hi Michele,
So here it is. My sons surgery was June 28. Initially the pain was very severe. The first couple days he was in ICU & had a morphine PCA. Even though this was his 2nd Decompression, he was not anticipating how bad the pain would be. His incision is very long & goes to the nape of his neck. The surgery lasted 6 hours & was very complex.
He was hospitalized for a week & had an ileus on day 6. Then he had to drink mag citrate to clear his bowels.
2weeks later he is on Valium, norco & colace & doing better. This is a very SLOW process. You have to take each day as it comes & you will see gradual progress. My son has a complex Chiari & will have close follow up for the next year. It’s a difficult problem. My best wishes to you & your daughter.
Also, nausea & vomiting can be pretty bad the 1st couple weeks. Brian is finally over that & eating well now. He lost 10lbs when he was in the hospital.
Thank you for sharing that - it helps to hear from someone who has BTDT. I hope Brian continues to recover well.
My daughter is 7, her decompression with duraplasty was April 22. She spent 5 days in icu and then came home. The first 2 days were hard with pain and nausea, but the 3rd day she started to improve and walk the halls and play!! We were lucky I guess…some people have a lot more pain. She had about a 2.5 inch incision. Her head is still very sensitive and we ended up cutting her hair very short so we don’t have to brush it so much…she said just Shave it off so it must be pretty sensitive!!
Thank you so much for the info! I hope she's continuing to recover well!