My Story

I have a leaky brain and I am crowd sourcing a cure.

My story starts around a decade or so ago where I started to notice constant congestion in my left ear and sinus. After being misdiagnosed for many years, the research caught up and I found Dr Jafri Kuthubutheen, a brilliant surgeon located in my home town of Perth, Western Australia.

Dr Jafri had discovered that adults were being misdiagnosed with glue ear when it was in fact, Cerebrospinal Fluid, escaping through the tegmen bones, a thin bone that separates the ear from the Middle Fossa, your skull base.

My tegmen bones had tiny holes in them and were very thin. Dr Jafri discovered that the fluid in my middle ear was in fact CSF and in 2020 I underwent a Craniotomy Middle Fossa Repair. In laymen’s terms, a piece of my skull was removed, the brain moved out the way and some cement and carpet popped in to keep the brain out of the ear, and all the juices.

It all went well, Dr Jafri, Dr Bala and the team were, and are, talented surgeons with huge, compassionate hearts.

Unfortunately, my broken head had another path for me.

Following a round of ear infections, development of Occipital Neuralgia (a painful nerve condition), increase in fluid, return of balance issues and constant escalation of pain, a Perilymph Fistula was diagnosed and subsequently repaired in April 2023.

A couple of months into the recovery from this surgery I had a sharp escalation of pain and a fresh flood of fluid into my middle ear.

Testing of the fluid showed a BTP of 21. CSF.

A referral to NIISwa followed to investigate possible intracranial venous stenosis or intracranial hypertension as the possible cause of the recurrent leak. Alas, whilst my opening CSF pressure was 9, indicating a chronic leak, it was otherwise normal.

As a last ditched effort, Dr Jafri admitted me to hospital for an extended stay whereby all the clever people consulted, performed more imaging and lastly, a CT Cisternogram, a rarely performed diagnostic procedure.

The CT Cisternogram involved a lumbar puncture whereby contrast dye was injected to my CSF and my head scanned, with hope the dye would illuminate the location of the leak. Unfortunately, only a small volume of contrast was shown with sulci at the middle cranial fossa.

Dr Jafri and his team have now reached the end of how far they can help me and I am currently waiting a consult with a new and possibly final specialist located in Perth, Western Australia.

I am crowd sourcing ideas, diagnosis and specialists to help me find a cure of my leaky brain. Cerebrospinal Fluid belongs in your skull and spine, not your ear, and I am determined to find someone who can help me pop that fluid back where it belongs, for good.

Recent imaging can be found on my You Tube Channel.

Please, reach out to me via the contact form if you can help.

Thank you,

The girl with the leaky brain.