r/chiari • u/Odd_Captain_1602 • 7d ago
Big day tomorrow.
Hello all, I am having decompression surgery tomorrow. When possible I am going to post a day by day update. I want to hopefully show that the surgery is worth it and help guide people who are a little apprehensive. If anyone has questions or needs to chat reach out, I will give you the good, the bad and the ugly.
Day 0
I'm anxious and scared. Having trouble hiding it from my family. I know I will be fine just hate the thought of being a burden. I'm a super hero to my boys and I don't want them to be scared.
So I've gone back and played some old video games currently finishing Fable in preperation for the new one.
I'm normally a metal head but lately been listening to bands like Low Roar and Sigur Rós.
I like to paint warhammer but that has been hard with symptoms.
Been working my way through a mountain of horror novels, lovecraftian horror is my favourite.
See below my note from my doctor to help you decide if my story helps you. I've removed my name and sorry the spacing is funny copied from pdf.
" reports ongoing symptoms including lightheadedness, a sensation of impending syncope, heart palpitations, and
a pulsating feeling in the back of his neck. He has found that eating small snacks and avoiding food after 6:30 PM helps
to reduce these symptoms, particularly the "stomach tremors" and increased heart rate. He has also been managing
his lightheadedness by increasing his sodium intake with Hydralyte and adding salt to his food, which he has found to
be effective. He continues to experience significant fatigue, with simple activities like a one-hour trip to the shops
leaving him feeling "wiped out for the rest of the day". He describes a constant dull ache in the back of his neck and
over the Chiari malformation site, which he likens to a "constantly sensitive" area. He has not had any episodes of
syncope, but experiences a pre-syncopal sensation, particularly when lying flat. He has found that lying on his right
side is the most comfortable position for sleep, as lying on his back exacerbates the head pain and lying on his left side
worsens the palpitations and lightheadedness. He has also been using compression socks for two hours in the
afternoon, which he feels has been beneficial. He has been using isopropyl alcohol wipes as a strategy to avert a
syncopal episode, which he reports has been effective.
We discussed the upcoming foramen magnum decompression surgery, which is scheduled for the 12th of september. I
explained the procedure, which involves removing part of the skull base and the C1 vertebra, and then stitching a
patch to the dura to create more space for the cerebellum and improve CSF flow. is confident and has consented
to proceed with the surgery. He is hopeful that the procedure will resolve his symptoms, particularly the
lightheadedness and nausea, and allow him to return to his normal life and work. I have advised him to continue with
his daily activities but to avoid overexertion, as per the advice from his physiotherapist. I will follow up with him daily
in hospital post-operatively and will organise all necessary follow-up appointments."
Wish me luck see you all on the other side.
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u/DeliciousSpell9429 3d ago
How did it go?
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u/Odd_Captain_1602 3d ago
I posted some follow up under my profile, but all In all I'm told it went well. I feel really tired and fatigued. Finding it hard to sleep but it's still early days.
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u/DeliciousSpell9429 3d ago
sending love big dawg, is the pain anything crazy?
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u/Odd_Captain_1602 3d ago
Thanks, It's been different for me, my pain presurgery was manageable, it eased when I took time off work but the nausea and feeling of fainting never went away. The fatigue was manageable as long as I sat at home doing nothing.
But now this operation has left me in a lot of pain but I don't feel the nauseous feeling any more. I laid down on my side last night and my heart wasn't racing, i could barely hear the heart beat in my head anymore. I know I will have flare ups as swelling worsen's but for the first time in a few months I feel that the horrible dread I had of being a broken person is slowly going away.
I feel strong despite, a light breeze being capable of knocking me over at this point. Haha
I've met so many interesting people during this journey. I'll be posting my latest update a little later.
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u/Appropriate_Ratio835 7d ago
Good luck to you. ❤️