Hi guys so I have had cranial decompression and the nuero said in may that I had a small gap and fluid was flowing etc.That was in may 2017.Last week being the 2nd of November I had a full body 75 minute long mri (it was torture).So this coming thurdsday I find out my results to see whats happening I have seen my mris already and im not a doctor but can see clear as day that there is an accumulation of fluid and I can feel it cause I pushed on it and ouch!! its at the base of my scull if your like me (don’t do it) it really does hurt.anwhoo my symptoms that I found really weird that apparently indicates there is something wrong is a burning ear! it litrally turns red and becomes hot to touch honestly I have not felt the same since my op so perhaps there is additional work needed.I would like to hear from people with experience of fluid build up.Does it require more invasive surgery eg getting your brain cut again or a shunt? and if so are shunts uncomfortable? annoying? they sound annoying? what happens if they get infected.The reason I ask is because when I had my op I got an infection and csf leaks would it actually be worth the risk if it came to that.I should probably ask the doctor and I will but I find it easier to talk to people who actually have the disease.And its been 12 after my op and im still! walking around my house somedays like a zombie with porridge brain that is the worst thing ever! I have forgotten what its like to have motivation and on the really bad days im emotional and get really short tempered and cant hear words properly does it get any easier! I don’t want to sound ungrateful as I know some people have it a lot worse than me but omg! I am so done with my soggy! brain.
Hi, just wanted to respond to you to give you a sense of hope. I have a shunt. Which i had to get 6 months after my cranial decompression surgery. Yes this is all scary for everyone who has to go through it. Dont lose your hope or your faith. It does get better. I have more good days now then ever before. But i am also being treated with medicine to help control the pressure. You will get used to the shunt and even forget that its there sometimes. Do your research and ask questions. I wish you all the luck.
I also had an accumulation of CSF at the back of my skull following my second decompression surgery, 1 year ago. First, they opened me back up again, drained the area, and sewed me back up. I continued to have constant CSF leaks. Finally, a Shunt was put in and after several adjustments, the CSF leaks stopped. The Shunt is only a minor annoyance, such as hearing it siphon CSF out and the incision sometimes still itches, 10 months post-op. I still have all the problems I had originally and do find the cognitive issues to be the most bothersome, especially since I am a teacher. I do find if I can get plenty of rest, meaning 10-12 hours of sleep, I do much better the following day, but still only have maybe a good four hours. I hope all goes well for you and all I can say is try to hang in there the best way you can…you are not alone.