Hi all, I hardly know where to start..
Havent posted on here for a while, as I'm in the UK, but no one seems to know anything about this in the UK, so I'm trying on here. I had a left sided AN removed at Queen Elizabeth University Hospital in Birmingham, UK, in 2011, and a subsequent CSF leak resulted in a removal of the ear drum, ossicles and a blind sac closure of the ear.
Friday 15th January 2016, I woke up with a searing pain in my AN ear. In pain all day, I saw my GP at 5pm, who instructed me, after contacting the QE, to attend the local A&E. I was admitted to the Hospital after copious quantities of morphine finally stopped the pain around 11pm that night. The following 7 days were horrendous with excruciating pain, and swelling of the ear, behind the ear, making it protrude out from my head, and extreme pain over my ear into my scalp, accompanied by squelching noises in and around on pressure.
The hospital have never seen such a complicated medical presentation as mine, and appeared at a loss to know how to deal with it. In regular contact with QE, although only the Registrars, as the Consultant was pretty lax at returning their calls, they requested CT & MRI scans, but due to lack of knowledge they weren’t able to decipher what the scans meant The QE meantime continued to ask me to be transferred but due to the lack of beds, it didn’t happen. To cut a very long story short, I was finally started on Antibiotics and high strength Anti inflammatory 7 days in, which stopped the excruciating pain, although my ear and surrounding tissue remains swollen and tender. Another 5 days later & I have just been discharged from Hospital and will be referred to the QE as an outpatient.
However, my discharge notes declare that to the Hospital best knowledge & belief, they consider that I have now developed a Cholesteatoma behind my blind sac closure, but of course no one can see into my ear canal now, so all they have to go on is my scans, which the Hospital openly admit, they have no idea what should or shouldn’t be there. It seems the QE are the ones who are to make this decision.
I had only limited knowledge of a Cholesteatoma, having discovered the disease whilst trying to work out what could have been wrong before my AN was diagnosed. I know that it might not be this, but am working on the basis that preparing for worst case scenario means anything better is a bonus. I can deal with it. What I’m wondering is, might anyone else have this disease, or know of anyone who has, who can maybe give me some personal insight into it? From research it seems that cholesteatoma is fairly prevalent in a study of Blind Sac Closure patients.
