The Queen of Optimism

Three times in approximately 12 months from 2004-2005, my ear drums ruptured.  I was a bit unprepared for this because of the spontaneous 14 year hiatus from ear problems.

My ears have seen one too many otoscopes.

In January 2005, my hearing loss increased in my left ear to the degree of needing a hearing aid again.  In the months following, I developed an ear infection that didn’t go away with repeated antibiotics, repeated prednisolone, repeated decongestant, repeated nasal spray, and repeated appointments with my ENT.

Sound familiar?

I now live several states away from where I grew up so my current ENT only knows the history I’ve told her.  In the meantime, my hearing got progressively worse in both ears at a relatively rapid pace.  In January 2006, my ENT suggested that I get a myringotomy with tubes and she expressed great confidence that my hearing would improve.  I asked her about the possibility that I may have otosclerosis.  She asked, “Who told you that you have otosclerosis?”.  I explained, apparently not very well, that I studied Audiology in college and one of my professors suggested I would eventually get otosclerosis because of my multiple ear surgeries.  She treated my comments as blasphemous and went on to schedule my surgery.

The simple outpatient surgery went like this.  I needed extra anesthesia because ENT doc told my husband, “it was much worse in there than I thought.”  It took me several days to recover at home.  And if you know me at all, you know I do not take off work, I do not nap, and I don’t let much keep me down.  In other words, it was bad.

At a follow-up appointment,   my hearing was tested.  Surprise!  It was worse than before the surgery.  ENT doc could not believe it.  She sat me down in a quiet, private room to tell me, “You have something called otosclerosis.”

At that time, she told me I was not a candidate for the stapendectomy surgery that helps otosclerosis based on the lack of integrity of my ear drums.  The next time I saw ENT doc, I got a hearing test. Surprise!  It was worse than the last visit.  She sat me down in a quiet, private room to tell me, “You have something called otosclerosis.” But this time, she said I was a candidate for surgery.  When I brought up what she said previously, she didn’t acknowledge saying it and brought in my audiologist to convince me to get the surgery.  “Doctor ENT is the best.  She has completed the surgery successfully for many patients.”

I wasn’t buying it.

Neither did my husband.  “This is a doctor who grossly overstates her abilities.”

I skipped an ENT appointment or two and by the next one, I got the sit down otosclerosis news with the message changed to me not being a candidate for the otosclerosis surgery.

Today

I wear bilateral hearing aids and am HOH or have moderate deafness, whatever you prefer.  I still have the 2006 tube in the right ear.   Since March 2009, I have had fluid behind my left ear drum.    Now, the fluid and infection has persisted for about three months.  My PCP has done everything she can to avoid sending me back to ENT doc, but it was time to check things out.  Last Monday, I saw ENT doc who told me that more antibiotics wouldn’t do anything and it was time for another surgery.  When I asked about the integrity of my ear drum, she said it wasn’t an issue.  She also told me there were risks if I didn’t get the surgery right away.   I let her know that I definitely have to wait until after a big day for me at work.  I would not give in to the pressure of an October 6 surgery.

As I mentioned in a previous post, I want to be done questioning doctors.  With everything else going on,  I just want things to go smoothly.

So much for that.

My husband convinced me that I had to see my PCP about this.  PCP reminded me that specialists don’t get to know their patients very well so ENT doc may forget my history.  She also let me know that there are many potential consequences of getting the surgery – the need for more anesthesia, unexpected problems only encountered once in the middle of surgery, permanent tinnitus, and more.  The best thing I can do is get an MRI of the temporal lobe.  This wouldn’t be the protocol for most people but most people do not have my history.   If it doesn’t show anything abnormal, keep the October 20 surgery.  If it does show anything, I will see a subspecialist, an Otologist.  In the meantime, I am on 3 weeks of antibiotics for safety and to prevent the infection from spreading to my brain.

So why in the world would I (or anyone) write such long posts about their symptoms and something so benign as ear problems?

1. It’s my hearing, dammit.  I have moderate deafness and it’s really something that I struggle with, mostly because people around me have no or little understanding of the needs of a person with hearing loss.  Because I wear aids, it must all be swell.  I can’t adjust the volume on my aids.  How’s that for swell?
2. These lengthy posts are giving me a glimpse into me as a patient.  Part of me is still that smartass kid who asked what the ENT doc was going to do about the holes in my eardrums.  I could benefit from a different approach seeing that it is getting me nowhere.
3. Maybe there is a link.  My PCP thinks so.  My left ear.  My left eye.  My left leg.  Infection that won’t go away.  Autoimmunity?  Or perhaps something like Sharon mentioned.
4. It’s not like I’ve never told anyone pieces of this long story, but I’ve never put it all together in one place.  I doubt I’ve told anyone, even my husband, the entire story.

I was too embarrassed, too worried that no one cared, too frustrated, too hesitant to appear to lay blame.  Too busy being Queen.  The happy, friendly, caring, mom and public servant workaholic who never has any problems.  Hell, people only know I’m HOH when I tell them.

Thanks for reading.  I enjoy your comments.  Please know they are always welcomed.

Filed under: Uncategorized Tagged: | adult chronic otitis media, doctor patient relationship, otosclerosis