Looks like most of us have something in common here.
Just if one wonders, I'm 36 years old.
Well I was diagnosed with a Congenital colesteatoma last July. After years of ear infections that always seemed to desapear with simple treatment, finally a GP decided to send me to an ENT here in spain. (Ear nose and mouth specialist I mean.) This specialist decided to check my hearing and send me of for a TC (head scan).
In Spain things work weird, which for me meant I got my results end of July and somewhere in August I was supposed to bring the results to the specialist again for evaluation. I decided to open the results and study them myself with some help of the Internet and decided it was serious.
I just went to a hospital in Barcelona right from work a few days later because of stress, fear and some symptoms I might have imagined, maybe they where real. I told a ENT specialist I was having serious problem concentrating and was feeling dizzy (sort of the trueth anyway) and maybe it had something to do with my ear problem. I was aloud to show my results and this lady walked away and when she came back she told me it was nothing serious, but I would need surgery. One month later I was aloud to come back and I would meet the team that would operate me and in the meanwhile I shouldn't worry. :'(
Guess what: I did worry! They told me to take Biodramina (seasick pills) and that was it. I went to my GP and told them I needed surgery and in the meanwhile no further instruction. GP told me to take it easy and at work they agreed and so I stayed home, taking 2-3 pills of Biodramina a day and sleeping a lot.
When I met the surgery team and the surgeon, the colesteatoma suddenly seemed way worse, but it wouldn't grow fast as it was there since birth. They would try to remove it via the earhole, otherwise thrue a little hole in the head. Estimated date November.
November came and I decided to see them and ask what I could do after they had done and evaluated some other tests like magnetic resonance, blood...
I was healthy enough for surgery but healthsystem is sort of bankrupt. So November was maybe going to be January February.
My GP just continued accepting I was better at home then in the job and the insurance doctor aswell, besides no advice but to continue with the Biodramina and some highly addictive anti stress pills. (still use them)
Anyway, finally in January the hospital called me and surgery would take place the following week.
Result: 5 hour operation through the earchannel and 5 days under observation because of high risk of fistula. Then another 10 days of min movement at home and then 2 more weeks of minimal activity.
Basically one month after the operation I was back to work and the surgeon sad I was lucky and doing well considering the extent and the location. Now I have check Ups and I feel lots better except I can't get rid of the stress and last week I told the surgeon I was feeling more and more dizzy again. They will call me for another CT scan and maybe (my personal diagnosis) is that something of the reconstruction pressures my balance organ.
Other side effects I have but almost gone: facial nerve was damaged which lead to partial paralisation of my face (gone after 3-4 month), tears run out of my eye when I eat.(seems to get less) and I lost some 15% of my hearing capacity, but that doesn't bother me too much.
Im still weak, find it hard to be active besides work (sitting in a chair all day) but now I have 1 week holiday and I can walk and swim every day and hope it helps.
In Spain they say poco a poco, little by little I should recover, and I am, it's just not nice I have to find my own way, because there is no rehab or psycological help in this almost bankrupted economy.
I consider myself lucky, but will still have to find a way to get strong and pill free again.
Luck and strength to all of you.