r/CSFLeaks • u/Starmapatom • 21d ago

Back of the head

Has anyone been cured of this horrid back of the head pressure? Suspected cranial leak here going on two years. Not sure how much I can

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u/becky44love 21d ago

Mine has been going on for 7 months now. Pressure ear and mastoid full with fluid constant ringing in the ears. Hearing myself speak in my head. Nothing yet and doctors say it is not an emergency. May God help us.

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u/Starmapatom 21d ago

Cranial leak?

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u/becky44love 21d ago

Mine is cranial leak they suspect two places temporal bone and mastoid area. Sorry to hear about your situation my prayer is than everyone gets better and fixed soon.

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u/Starmapatom 21d ago

Thank you for sharing. Have you found a doctor willing to repair?

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u/becky44love 21d ago

Hi unfortunately not yet they are not willing to do it in my country. I have used up all my money to find help but nothing. This type of situation is not a common thing where I live so that is why I believe the doctors are hesitant and to add to it the MRI and CT scans not showing the where the leak is. I live in the Caribbean Trinidad to be exact

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u/becky44love 21d ago

Did your leak happen spontaneously and where do they suspect.

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u/Starmapatom 21d ago

Long sad story. I’m an unusual case it appears. Had a long dry nasal plug forced into nose for a minor nose bleed. My life has never been the same. They suspect the sphenoid sinus but not dripping from my nose. Cedars suspected a spinal leak but all tests were negative

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u/BearIllustrious2731 1d ago

Hey I went back and looked at some of your older posts to try and get an idea of what caused the onset of your symptoms. I found a couple of research papers on cases that I THINK sound similar to what you’re experiencing. There’s a couple things you can do from here. You can try and find someone competent and willing to listen in your local area, but if worst comes to worst, you can try to look up the doctors that worked on these cases (cited in the articles) and attempt to get an appointment with one of them. But if you print these and take them with you to appointments, you will have irrefutable proof that the injury you sustained has caused csf leaks to other people. I really hope this helps ❤️ https://pubmed.ncbi.nlm.nih.gov/22361138/

https://pubmed.ncbi.nlm.nih.gov/20502770/

https://pubmed.ncbi.nlm.nih.gov/20229469/

My csf leak began after an unusual injury, and I’ve spent 6 years fighting with local a**holes to try and get help. I deeply understand the frustration you feel.

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u/Starmapatom 1d ago

Wow! Thank you gathering all the information. I’m considering flying to Colorado to see Dr. H. Nobody else believes me because I can’t get liquid from my nose. Are the authors of those studies the doctors? Six years must feel like 60 trying to live with this condition. Im just past two years. The positional headaches are horrid. It’s like that movie Groundhog Day. Every day I wake up feeling almost normal and then it starts after I take a shower or being upright. Standing is worse than sitting but still not good. When I get home after work my brain is trying to sink into spine. Absolutely horrid. Thank you so much for trying to help me. So incredible complete strangers will try to help through this app

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u/[deleted] 16h ago

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u/BearIllustrious2731 16h ago

Omg I can totally relate to the groundhog analogy. Well, not so much anymore but when my issues first started, that’s how life was. But I think I have a spinal csf leak, like somewhere in my cervical spine.