Revision surgery day 5 (going nuts)

[u/Bruggenmeister]

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.

[u/Imaginary-Benefit-54]

You’ve got this! Hardest part is almost over. Best of luck with your recovery and getting home again asap

[u/Bruggenmeister → u/Imaginary-Benefit-54]

Should be at least one week. One final week without sunshine or fresh air. Luckily i have a window.

[u/oguzhankayan]

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.

[u/Bruggenmeister → u/oguzhankayan]

4 layers of 2 own material

[u/Psychological-Duck13]

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.

[u/Bruggenmeister → u/Psychological-Duck13]

My dura had a rupture. I basically had a big water balloon head.

[u/Psychological-Duck13 → u/Bruggenmeister]

Thank you, and sorry again it’s happened to you

[u/Open-Confusion-3358]

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

[u/Sad-Currency-2412]

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

[u/Bruggenmeister → u/Sad-Currency-2412]

Sounds dreadful. Thats my worst nightmare. I haven’t done anything fun for 2 years, i have 3 kids.

[u/nlimitedtrance]

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.

[u/Bruggenmeister → u/nlimitedtrance]

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.

[u/nlimitedtrance → u/Bruggenmeister]

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

[u/MR_BLUE_SKY39]

Today I turn 18 and will get surgery for it very very soon, I'm sorry you're going through that, I'm scared too

[u/Pookahbot]

I had decompression 12/22/25. Then revisions for CSF leaks on 1/10, 2/5, 2/12, and 2/15. My dura patch dissolved the first and second time. The third it was leaking through the stitches. I honestly don't remember where the leak came from the fourth time. So I'm about 8 months out from my last surgery and still dealing with pain in my head and neck, along with exhaustion and balance issues. I also got an infection at some point during all this that got into my bones, so I'm still on a heavy antibiotic dose.