Hello to all:
After having lived with my problem since it first became apparent to me the end of June 2003, I feel a need to share my experience with others.
I had ear problems from birth and had three operations, all of which were misdiagnosed at the time and the last one, at age 11 resulted in total deafness in my right ear and the canal being sealed off totally.
I am a 57 year-old ex-machinist who is on a disability due to chronic back pain.
I awoke one morning as I earlier stated, sometime in the end of June of 2003 and felt “different”. Trying to get out of bed I fell to the floor totally incapacitated by vertigo.
After several attempts, I managed to stand up and make my way rather wobbly to the bathroom. I also found I could not speak louder than a hoarse whisper.
I also at this time noticed a peculiar weakness in my right shoulder.
Thinking I had a stroke, thoughts of doom raced through my mind.
I had an appointment that very afternoon with an E.N.T. specialist and felt that he, being a doctor would know if it was a stroke or not.
Seeing me for only a few brief moments he re-assured me he felt it was not a stroke. He inserted the usual optical device up my nose to check out my vocal chords and found one side completely paralyzed. He also found my tongue to be pointing to the right side of my mouth when I stuck it out. Also he noticed a weakness in my right shoulder.
He said that this was a problem he could not handle and made an appointment for me to see a specialist at Sunnybrook and Women’s Hospital in Toronto.
This was during the SAARS outbreak at this very hospital and I assumed I would have a rather long wait to see anyone there. In the meantime I was sent for an MRI to take with me when I went. I was shocked when I was given an appointment for just 7 days later.
I was doubly shocked when the specialist there told me what the problem was and that it was the most severe case he had encountered to date.
I had a Cholesteatoma that had been allowed to grow undetected in my head ever since my last childhood surgery on my right ear when it was all sealed off. Therefore no visible discharge. Therefore no way to detect the problem all those years. Also, being sealed shut the discharge had nowhere to go but to form an increasingly larger Cholesteatoma.
This surgeon was about to leave on vacation but postponed it to operate on me because he said if left as is it was life threatening since it had grown so close to the brain and there was a great chance of meningitis if the disease mixed with the CSF that surrounds the brain. That first surgery took place July 22nd 2003 (I missed the Rolling Stones free SARRS concert). OH WELL!
The surgery went well and I left the hospital the very next day thinking all was well again. What followed was monthly visits to the specialist so he could drain off discharge still forming and sometimes this meant cutting a new window in the ear canal when the old one closed up due to scar tissue. I might add that the cutting was always performed without any anesthetic. The pain would be rather intense for just a few brief moments so I stoically endured.
Eventually he informed me that my last MRI showed more growth and a need for further surgery which took place May 12th 2006.
This time the surgeon went as far as he dare into the skull and feared he might have nicked the lining of the brain through the large hole the Cholesteatoma had eaten through the skull wall. This he sealed off with human glue and my stay in the hospital was a full week with very close monitoring.
Again came the return visits every month, sometimes more frequent, and in December of 2006 I was again informed I needed more surgery. This time he prefaced the report saying that things were totally out of control this time and I would need a very radical surgery involving removal of the mastoid and surrounding areas. I was informed I would in all likelihood be rendered paralyzed on my right side of my face, looking as if I suffered from Bell’s Palsy. He informed me that I would require an incision from behind the ear at the top, all the way around the back of it and down the neck, along and under the jawbone to a point almost an inch from my larynx.
He was careful to go over every option with me but the outcome was always that if I said no to the surgery that eventually the disease would kill me.
I went into that surgery January 12th 2007 fully aware of the consequences. He said I would be the only patient he saw that day and a full team would be working on me. The estimate was 8 hours. It took just over 13.
Four days post-op I had to be rushed back in for emergency surgery due to the fat tissue that had been harvested from my leg to fill voids turning necrotic as well as infection of the right temporal bone. They had Infectious disease Service evaluate me and they found not just one but three very persistent bugs involved.
What followed was a full week of IV injections of Vancomycin, Ciprofloxacin, and Flagyl. Anyone who has encountered Flagyl will know it is heavy-duty stuff indeed and quite ******n the veins as well.
Also at this time we began to realize that I was having great difficulty swallowing foods unless they were pureed. Assuming this was temporary I endured once again.
It is now mid April, a full three months after surgery and I still cannot eat solids well.
I have lost more than 48 pounds. Thank heavens I was overweight to begin with.
My right eye constantly tears. There is a gold weight to help the lid close.
I get an itchy tingly feeling in my throat that causes intense coughing fits at times and these are disastrous when they happen when trying to eat as I aspirate almost every time this happens. I am on a constant watch for the signs of pneumonia and during my last visit April 2nd, I was informed that the remaining Cholesteatoma that cannot be surgically removed is once again draining out of control. I have a nurse come in every second day and remove the packing that is stuffed in a new hole in the ear canal and it is beginning to look as though this could be a permanent situation for me.
So here I am not knowing what will come in the future.
Hole in the Head
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