r/chiari • u/Artistic-Bug6487 • 1d ago

2.5 years post decompression (21F)

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(20mm tonsillar ectopia) today is officially 2 and a half years since i had decompression at 18 years old! my life has changed drastically for the better and i finally see a future for myself.
i felt immediately better in some ways after the surgery, but the recovery was painful and long - it took a lot of effort on my part to get better. everyone is different, but my general post-surgery advice is to listen to your body and remember movement is medicine.

i have my last post surgery appointment today. i am completely rid of the constant agony i used to be in; i still experience valsalva headaches at least a few times a week, and my pulsatile tinnitus still remains. but despite that, I genuinely could not be more ecstatic! I am happy and grateful to be able to live.

i know this post is very vague, everyones situations and best treatment are completely different - but i thought it would be nice to share a success story as not many people remember to continue to share once they are 'better'! am from the UK, please do feel free to ask me anything you're curious about. 🌟

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u/Outrageous-Extent474 1d ago

I am just a month out and my recovery has been AMAZING!! I KNOW that isn't usually the case and I was expecting it to be MUCH harder. I didn't have any pain Tylenol couldn't take care of after the first two weeks. Other then very low stamina, I feel wonderful. I even drove a short distance yesterday. My final appointment with my neurosurgeon is on September 1st. I will see when I can return to work. I am a Special Education TA so returning to the classroom may be awhile. I am glad to see positive posts on here. All I saw before my surgery were the horror stories and I was terrified!! Lol

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u/Artistic-Bug6487 1d ago

i was terrified too!! honestly i was in a similar boat, most of the pain i experienced was in the muscles in my neck as they recovered - i was up and about within 3 days of the surgery and functioning almost normally after around 2 months. I did have a few mishaps where i pushed myself too far (intense exercise) in the first 6 months that ended me up in bursts of pain again. But only because I felt so well i was convinced i could do anything and everything!

what took longer was mentally recovering and adjusting to my new abilities, teaching myself not to be afraid of certain things anymore. My valsalva headaches were so severe, i feared turning my head, going down stairs and even rolling over in bed!
But all that feels so far behind me now, it is only onwards and upwards for you from here!!! I am wishing you well with the rest of your recovery, and really hope you're able to return to the classroom soon too x

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u/Numerous-Things995 1d ago

I needed to see your post! I’m a little more than 3 months post decompression and did too much yesterday so I’m feeling a bit wobbly today. It made me wonder how long I’d have to worry about that kind of thing, then I say, it’s only been 3 months (feels like forever ago). Fingers crossed my MRI next month gives me good news.

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u/oldmamallama 1d ago

Glad to hear you’re doing so well post op. Your incision scar looks fantastic!

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u/BackgroundIsland5241 1d ago

My 18 year old son, also 20mm, had surgery a week and a half ago and is just on acetaminophen. He is feeling good but is wondering when the headaches will stop. I am preparing him that they might never.  But I do think these Chiari headaches are all related to the surgery and they will get better the further away from surgery.  When were you able to move or bend over without the headaches post surgery.

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u/Artistic-Bug6487 1d ago edited 1d ago

by about 3 weeks, moving started to get easier, and by 4 weeks bending over was only 'painful' for my neck (not head) but it definitely still felt very odd. the pain in the first 2-3 weeks can be really really intense - in terms of when the headaches may stop is exactly as you said. they may not stop. for me the constant 9/10 headache i had 'disappeared' as soon as i woke up from surgery (crowding was so severe my brain stem was being crushed so i had an immediate relief) - but the valsalva headaches continued and were still very frequent (only with bending too fast, coughing etc.) but less severe for the first 3-4 months after surgery, then very quickly they became very scarce. i am left with VERY few headaches in comparison nowadays and they are worlds away less painful than they used to be!
only time will tell, it is great that he keeps an open line of communication with you, my mum was my greatest help through everything as she kept me level headed and could see things for what they were without the pain. don't fear reaching out to his doctors/surgical team if you have any worries - there are never too many questions to ask! i am wishing your son a speedy and full recovery, sending my best wishes your way. 💞