Chiari Online Support Group

Recovery for 14yo daughter


#1

Hi all,

My daughter is having her decompression surgery on July 16th and I’m hoping to gather information on what we can expect after, and what I can do to make her as comfortable as possible.

Thanks!


#2

Hi :slight_smile:

From what I’ve heard everyone recovers differently from the surgery but I’ll let you know my experience and hope it helps!

Im 26 so there might be a difference in recovery based on that also but I have Chiari Type 1 which was causing a syrinx extending from my brainstem to lumbar spine.

The first night or two in the icu might be a shock, I had a lot of anxiety which didn’t help, it’s probably the worst pain that I’ve been in when the morphine wore off but it quickly dies down to some thing that can be managed with paracetamol/ibuprofen. I avoided the codeine cause it didn’t sit well with me. From there, I didn’t expect that it would effect my walking so much, it took me a while to be able to walk to the bathroom unassisted. There may be a lot of vomitting, I was just permanently nauseous for weeks following, just because it effects the 4th ventricle which is close to bit that stimulates vomitting in the brain.

I was out of hospital 5 days later, take the car ride home very easy, my dad picked me up and drove pretty slowly but it still felt like there was a turbine in my head when I got out the car.

Whatever makes her happy or relax, whether it’s movies, books… for me I had a whole load of PS4 games, Netflix, comedies in particular, rewatched some of my favourites… only do that for the next couple of weeks, keep people you love nearby and focus on the fact that things will get better. From what I gather depression is quite common post surgery, my mood has definitely been affected but it does get better. It’s important to focus on the things that make her happy.

In terms of returning to school, for me it was work & uni the Neurosurgeon recommended 3 months and the junior doctor who discharged me wrote a line for 6 weeks. By 6 weeks I still had shooting pain up my spine when I walked so that was ridiculous. I also tried to catch up with uni work online earlier and I wish I hadn’t, it made me tense and hence the symptoms that im trying to get over seemed worse. Everyone can tell her when she should be ready to go back to normal, but she’ll know herself when she feels ready.

I’m 5 months post decompression now, things are gradually getting better, my syrinx has started to close in but I’ve been advised that it can take around a year for the symptoms to resolve so I’m still having some trouble with things. Each month is better than the last and I’m back at work, but I still feel like I’m recovering from the surgery (compared to 5/7 days in the gym before I still can’t run without neck pain).

I hope that’s helped you, thoughts are with her and your family and I hope everything goes well. Let me know if there’s anything else you want to know.


#3

Thank you so much for all of your input! It was very helpful and I think my daughter will find it useful as well. Take care. xox


#4

I had decompression surgery about 8 months ago. Like MIMC said, everyone is different, I’ll share my experiences. I’m 34 and am in good physical shape. I used to run and hike quite a bit. For about a week after surgery I couldn’t look at a screen without feeling dizzy. I was able to get around well enough on my own at about 4 weeks but I had some minor complications, so I’d expect it’s usually faster than that. It took me about 12 weeks before I was able to go back to work and about 5 months before I was able to run again without pain. Some of my symptoms are still there but overall I feel pretty close to normal now. Praying for really fast recovery and that you guys get some great time together!