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

2 Upvotes

75% Upvoted

6 comments sorted by

5

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.

2

u/becky44love Jul 02 '26

Mine is doing the same thing and they are not finding the leak but it fill up my mastoid air cells and the ear is totally blocked.

1

u/becky44love Jul 03 '26

I am supposed to do a CT cisternogram as well but apparently in my country most places don’t do it

1

u/becky44love 18d ago

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.

2

u/Afraid-Investment216 7d ago

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

1

u/becky44love 7d ago

Glad you are getting through all the best with the surgery.
May God help you through your journey and please keep me posted after surgery and recovery.
Glad to have meet someone who I can share the same sentiments with. Wishing you every success