Baffled

[Ronald49]

I have been feeling deaf in my left ear for years,to me it didn’t feel like true deafness as sometimes when I turned my head it totally cleared until I moved my head again.I also felt my head was full of cotton wool.I asked different GPs for years & they just looked in my ears & said they could see nothing.Eventually I was sent for hearing test & audiologist gave me a hearing aid but said symptoms I was describing sounded like something else & referred me to ENT.I got an appointment recently ( 2 years later).The Doctor I saw was really good & after doing so tests he said it was fluid behind my eardrum.He did a small op drained fluid off & put a vent in.

Two days later I got an urgent phonecall from hospital to come back immediately.Apparently when consultant reviewed my notes & discovered fluid was clear it actually was fluid leaking from my brain.I now need an operation to seal where fluid is leaking from.

Apparently this is one of most misdiagnosed conditions in world.

I was wondering if anyone else has experienced this.Its called Spontaneous CSL.Thanks.

[cyberbarn]

I am sorry to hear you have this, but really pleased they found it because many people struggle for years with severe symptoms because CSF leaks are not common enough to make medics to think about them.

Many people with hypermobility or Ehlers-Danlos syndrome have this problem, so you might want to look into that.

[Madlegs1]

Very frightening ! Great that you are getting it sorted.

Good luck.

[Jackiemerritt22]

I also had a csf leak in tegmen bone which is behind ear. I also suffered from partial deafness in the ear and had fluid behind ear, i also leaked csf out off my nose but it was always a very small drip and very infrequent so i went undiagnosed for a long time 7 years. In may 17 i got bacterial meningitis and was in a very bad way and spent 3 weeks in hospital. On discharge papers it states mastiod ???? ENT came to see me and said scan was fine no follow up appointment nothing. When i got home i googled meningitis and water drips from nose and the first thing that came up was csf leak. to cut a very long story short i finally got diagnosis and had repair done sep 18. Unfortunately i am still suffering with severe headaches eye pressure and they have found out i have problems with some off the veins in my brain and im currently waiting for stents to be placed,