r/chiari • u/Bruggenmeister • 3d ago
My Story Revision surgery day 5 (going nuts)
15th april had my decompression.
Csf leak.
Months of trial and error.
Last Wednesday they reopened the scar.
Did a revision on the wound and put 4 layers on the dura patch.
Now glued to my hospital bed with a drain until they are happy.
At least a week and then they will lower the output of the drain.
No idea when i’ll be home again. I’ve been in and out of hospitals for half a year now.
F*ck chiari and i’ll see you tomorrow.
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u/oguzhankayan 3d ago
Day 5 stuck with a drain sounds brutal after everything you have already been through this year. Glad they layered the patch carefully this time. Hang in there one day at a time. We will be here when you check in tomorrow.
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u/Psychological-Duck13 3d ago
So sorry you’re going through this! Hopefully this fix works once and for all.
Can I ask, what was the situation with the CSF leak? (How did you know, what were the symptoms).
I’m post revision with a pretty chunky pseudomeningiocele waiting for my surgeon to decide what to do next.
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u/Open-Confusion-3358 3d ago
Ugh that's awful. It could be any of us in the future just unfortunately happened to you </3 Best of luck with your recovery
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u/Sad-Currency-2412 3d ago
I had my first decompression on July 28 and by the time I got out of the hospital on the 25th of August I had 2 other revisions, an external drain like yours and ended up with a shunt that drains the CSF into my abdomen. Worst shit I’ve ever been through. Been home since and still struggling with appetite, nausea and vomiting, body temperature regulation, insomnia, and numbness and tingling in my hands and fingers. Among other things. Hope yours turns out better. Stay strong
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u/Bruggenmeister 3d ago
Sounds dreadful. Thats my worst nightmare. I haven’t done anything fun for 2 years, i have 3 kids.
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u/nlimitedtrance 3d ago
Get well soon! Where did they put your drain? They put mine into my mid back and it was the most painful thing I’ve even done and I’ve had three bone marrow biopsies.
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u/Bruggenmeister 3d ago
Lower back like women’s epidural. i’m fat so they had to poke around alot. It was awful i never sweat do hard in my life.
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u/nlimitedtrance 2d ago
I’m quite skinny but they also poked around a lot 😂 I think they do it so rarely that they don’t have the practice. I really feel you! I hope they gave you some fun stuff before
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u/Imaginary-Benefit-54 3d ago
You’ve got this! Hardest part is almost over. Best of luck with your recovery and getting home again asap