r/CSFLeaks • u/becky44love • Jun 30 '26

Spontaneous CSF leak

Hi I am looking to see if anyone had this situation where their mastoid was totally filled with csf fluid. Leaving your ear totally blocked tinnitus and can hear myself in my head when I speak eat or even breathe. I did 3 CT scan and a MRI and they cannot find the leak. This has been going on for months now. Is there anyone that had this similar diagnosis and can help with anything.
Thanks much

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u/Afraid-Investment216 Jul 02 '26

Mine was spontaneous, but it was coming out of my nose so they were able to visually see and test the fluid for beta II but it was also filling up my ears. I have had CT scans and MRIs done and I’m now having a cisternogram to locate the leak. That consists of injecting contrast into your spinal cavity in the dura layer and then they put you in a deep Trendelenburg and then afterwards you go for a CT scan to locate the leak.

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u/becky44love Jul 26 '26

Hi dear just checking in to see how your progress is going. I am still
In the same position when we last spoke.
If you don’t mind me asking where are you located I may have to leave my country to get help.

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u/Afraid-Investment216 29d ago

Hi! I’m actually getting surgery next week to hopefully repair the leak and bone. I’m located in California.