Hello. Glad to have found this group. My 9yo daughter was diagnosed very recently. She has mild symptoms but we caught it because of her scoliosis and lack of sensation in one hand that caused her pediatrician to refer to an orthopedist with a note to send her for MRI…thank goodness for doctors who pay attention and are conservative in their approach. better safe than sorry! We got two NS opinions who said that surgery is definitely needed because of 2 syrinx and 7mm herniation. We have scheduled surgery rather quickly in order to minimize the anxiety that comes with anticipating a major surgery. Unfortunately, the first NS gave my daughter a lot of graphic details about the surgery and recovery which have instilled immense fear in her. I’m all for sharing details but all in the right time and in an age-appropriate way! ANYWAY…surgery is scheduled for Nov. 18 and I have a few specific questions: 1) any good books or videos you can recommend for children about Chiari, decompression surgery OR generally being in hospital/dealing with pain? 2) any recommendations for how to best support her healing both while still in hospital and after release? 3) anything we should be doing now to prep her body for such an invasive surgery? 4) has anyone seen the symptom of children (or adults) having a difficult time regulating emotions (ie. going from calm and happy to intense anger from one moment to the next.) I’m sure I have a million more questions but since it is so new, they haven’t formed yet. Thanks for reading and for any advice!!
My son was 13 when he had his surgery
He started his symptoms at 8 years old
I told him the bare mimimum of how the surgery was going to happen and so did his surgeon
Cannot believe yes gave a detailed report…
Has he no heart
My advice is to down play it and don’t let her watch any videos
There are 2 videos on Google on how the op is done… To this day I have not watched
It will torment you…
So don’t watch either
The main thing is he must have experience
If you take too much skull and spine the brain can slump
If you take too little the syrnix will not go away and you will need another operation
Is he going through the dura
Have you asked him these questions
Thinking of you
It’s the hardest thing I ever had to do
My 16-year-old had posterior fossa decompression surgery (including the electrocauterization and dura patch) last Friday at Children’s in Dallas. Our neurosurgeon had him do some physical therapy before the surgery, but otherwise there was no special prep. He spent three nights in the hospital. Our neurosurgeon was wonderful. He did talk about what the surgery involved, but of course 16 is quite different from 9. My son said he tried not to think about it beforehand, so he was pretty normal leading up to it. Unsurprisingly, he was very nervous the day of. Surgery took about 5 hours. They didn’t shave much of his hair at all. Really, you have to know what you are looking for to really see it since his hair is kind of longish. He came home with a lot of prescriptions and he’s been managing the pain reasonably well. His big problem is nausea and not being able to hold down much food. He says he’s already noticed an improvement in his tinnitus. He’s released to return to school (virtual) next week. We’ll see. His teachers have been supportive. Children’s Hospital has a team called Child Life made up of perky people who are great with kids. Even though my son is 16, they were able to tell him about the hospital, show him pictures of what the surgery room would look like, the recovery room, and a typical hospital room. In general, they answered non-medical questions about the hospital just to make him more comfortable with what was going on. They even gave him a fidget toy for anxiety. If your hospital has that, they might be a great help for your daughter.
First, welcome to our community! I am sorry that I have not taken the time to properly introduce you all.
Second, as a kid was has gone through many surgeries I think I have some valuable insight here rather than speculating about what might be best. I am a little biased because I grew up in and out of the hospital. I was diagnosed at age 2 and had 2 surgeries at age 3, then another 2 around age 5 and another 2 around age 12. Because of this I kind of like the hospital a lot and think of it almost as another home. But I do have my own share of stories of hiding under chairs and stuff like that. I was always told the rough details ie. They are going to open your head up, and take a little piece there and a piece there and close it back up. It was never too gory until I had my surgeries to remove a lumbar shunt. At this point, I was told more about what would happen both before and after the surgery. I was ok with that, but I had also been in the hospital system for 10 years then. I think, as scary as it is to know what’s going to happen, it’s important for children to know what is going on in as much detail as they want. There is a reason why hospital playrooms have small MRIs and IV stands. There is a reason why pediatric patients play doctor and often repeat the same things that their doctors have to them on their dolls. I can speak from experience because I have done this many times.
With that said, I would refer you to the professionals, because in my opinion as an adult and as a child cancer patient, we all don’t actually know what’s best for the children. Were just taking stabs and the dark and thinking that our stabs are more right because we are closer to that person. You should go talk to a child life specialist! Every children’s hospital will have a couple and most adult hospitals will have at least one. They are the most friendly, lovely people. They are also really good at talking to your children and actually helping them to understand. focusing on the child’s emotions and issues arent a side-part of their job, it is their jo and they are all very good at it.
I will say that neurosurgeons and anesthesiologists are usually not the most socially capable doctors. But that is because they have spent all that time training to be the best then being social.
Thanks for sharing this important perspective! We did just successfully complete surgery and we are back home recovering. I agree the child life folks were totally awesome!
Thank you for this important forum!