Wouldn't this be nice? Two doctors happily, intently discussing you?

My ENT and PCP have joined forces for the good of me, Patient Q.

Today, they discussed my situation, my MRI results, my myopathy and other problems.  I am having surgery tomorrow.  It will include draining fluid from my middle ear and mastoid as well as tube insertion.  My PCP is confident that the procedure will give me relief.

My PCP also reports that my ENT (despite her occasional amnesia about my history) thinks highly of me and is sympathetic to me and my concerns about my hearing loss.  They both believe I have an autoimmune or endocrinological problem that is contributing to all of my problems including my ears and myopathy.  My PCP is glad to have an ally who does not think of me as crazy and who is shocked to learn that any doc would imply that I am.

So, tomorrow’s surgery…. I have no idea what the expected recovery time is.  I’m looking forward to the expected relief and to following up with my docs for suggestions on how to pursue a possible autoimmune or endocrinology connection.

Wish me luck!

Knowing that I need another ear surgery brings all sorts of emotions.  All of which I tried my best to suppress.  It only works for so long.

The Legacy

I was about 8 years old and I can recall turning up the volume of the family television.  It must have gotten

I'm talking about middle ear infections. My diagnosis was chronic otitis media.

especially loud because my mother told me to stop changing the volume and to stop “faking” like I couldn’t hear.  At some point after this, green goop and blood started coming out of my ears.  My ear drums had ruptured.  At some point after that, I had a surgery.

But that’s not the whole story.  I had ear infections from the time I was a baby.  My parents’ treatment was to have me lie down on a heating pad.  I would be wet with sweat and in incredible pain.  I still shiver when I smell a heating pad warming up.   At some point, there may or may not be another rupture and I would go to an ENT and take oral antibiotics.   I would make medication charts to make sure I took every antibiotic dose as prescribed.  At some point after that, I would still have the infection and I would get a myringotomy with tubes.

I was about 12 years old when an Allergist told my mother that in order to keep me healthy, she and my father would need to stop smoking inside their home.  He talked about how easy it would be to set up an outside smoking station.  The Allergist took lots of blood from me and poked me with lots of needles.  At some point after that, my parents never tried smoking outside and my mother reported that the Allergist said I needed some sort of globulin.  It would require us to travel far away on a regular basis.  The only other comments my mother made about this was when talking to other people about the “goblins” I needed.  I never received the globulin treatment(s).

When I was around 13 years old, my ENT talked about holes in my eardrum.  He would say, “If the holes don’t close up by the next time I see you, we’ll have to do something about it.”  I saw ENT doc at least two more times before I spoke up and said,

“You said the same things about the holes the last two times I’ve seen you.  What are we going to do about it?”  After leaving the appointment, I was punished by my mother for being a smartass to the doctor.

Very similar to my aids circa 1987

It took a couple more visits to the ENT doc before he decided I needed a tympanoplasty in each ear.  This surgery closed the holes in my ear drums.  On the right, with a piece of muscle from behind my right ear.  On the left with a piece of skin from my left ear lobe.  It was a pretty involved surgery and I was hospitalized for several days.

After the surgery, I developed infection behind my ear drums again.  Rather than do a myringotomy with tubes, ENT doc prescribed me hearing aids with the explanation that I was going to have ear infections forever and the hearing aids were a permanent solution.

When I was around 16 years old, I had become pretty depressed about living with a profound hearing loss.  I recall my father expressing frustration and he took me, by himself, to a specialist at the nearest children’s hospital.  The Children’s Hospital ENT said I needed my tonsils and adenoids removed.  I had the tonsillectomy and adenoidectomy and did not have an ear infection again until I was pregnant at age 30.

From 16 to 30, I had a mild to moderate hearing loss, too mild by most standards to wear hearing aids.  I struggled with my hearing a ton but managed to make it through.

When I developed my ear infection during pregnancy, I had no real hope for treating it until after delivery.  After my ability to breastfeed suddenly stopped, I began taking antibiotics.  After a few days, I woke to a familiar feeling, my ear drums ruptured.  They ruptured two more times in the next year.

To be continued…

Why yes, of course, comment all you’d like.

If I had to predict the outcome of today’s three appointments, I would have been spot on.  Except for a few minor details.

PRIMARY CARE DOCTOR

• Removal of sutures
• Skin biopsy results:  indicates a need to watch for and possibly biopsy other moles
• B-12 injection

HOSPITAL FOR ARTERIAL DOPPLER

Technician said:

• Blood flow looks good
• Didn’t see anything abnormal
• My hope for a breakthrough in my diagnosis and treatment – deflated.

OTOLARYNGOLOGIST (EAR, NOSE, AND THROAT DOCTOR)

• I still have fluid in my left ear
• I should get a tube in my left ear (tube #13)
• Doctor ENT completely forgot and does not acknowledge comment at last surgery (2006) “It was a lot worse in there than I thought”
• Doctor ENT thinks I should see a specialist at University Hospital for my other ailments.
• After I told Doctor ENT that I did see a Neuromuscular specialist at University Hospital she suggests I see an Autoimmune or Endocrine Specialist at University Hospital.
• Doctor ENT recommends I go back to Neurologist #1 with my muscle biopsy results.
• I did not have a hearing test but Doctor ENT said, “Your hearing is worse, isn’t it?”
• Doctor ENT also said, “Has anyone considered a possible autoimmune disease that may link everything together including your ears?  You’re pretty young to have all of these problems.”
• My surgery is scheduled for October 20.  Last time, I was down for 4 days afterward.

SUMMARY

I am not really comfortable with getting surgery #13 based on the weakness of my ear drum and Doctor ENT’s previous comments over the past few years about future ear surgeries for me.  However, I am done questioning doctors so I will take the plunge.  After leaving the hospital today, I held back tears.  Even though I had my doubts that I’d finally be on Easy Diagnosis Street, part of me really wanted this to be the case.  My leg pain increased after the arterial Doppler that included blood pressure cuffs that tightened around my leg in four places.  Part of me does want to go back to Neurologist #1.  I’m going to do my best to give up on a diagnosis for my leg, etc.

Quello che sarà, sarà.

Of course, please do comment.