This is our experience, and should not be confused with medical advice.

A little background on how we got to surgery day.  My little one qualified for speech therapy due to some slight delays.  For many, it might not have been that noticeable.  However, -ar and -er continued to plague her.  Both blends are in her name.  It’s kind of important to be able to say your own name.

The initial diagnosis came during a different procedure.  After failing a hearing test, we worked with our daughter’s ENT to determine the cause.  She went in to have a new set of tubes put in her ears in hopes her ear would drain, allowing her eardrum to fluctuate and improve hearing.  During the surgery to insert tubes, her doctor found the cholesteatoma.

Enter the months that seemed to drag on and on.  After discovering the cholesteatoma, we had a change in our health insurance.  That meant starting over. Ugh.  New ENT, more waiting.

After an MRI confirmed the presence of the cholesteatoma, we were scheduled for surgery.  Another round of hearing tests were done to have a new baseline.  Unfortunately in six months, her hearing had declined significantly.  Previously the doctor had said our best case scenario was “near normal hearing.”  With the rapid decline in hearing, damage to her delicate bones was logical and, therefore, our best case was no longer mild hearing loss.

What to Expect from your Child’s Cholesteatoma Surgery

Day of Surgery

We arrived early at the hospital for check-in and lots of waiting.  The tympanomastoidectomy surgery was scheduled to last four and a half hours, and went the whole time.  After we were able to be with our daughter as she slowly woke up from the anesthesia.  After about an hour in recovery, she asked to go home.

Her ear was covered with a cup, stuffed with gauze and cotton.  The gauze needed to be changed periodically because her ear did bleed a little.  She didn’t talk much, didn’t eat much, didn’t do much.

She spent the rest of the day on the couch.  She took the prescribed pain medication, ibuprofen, and antibiotics.  I also applied ice as requested.

Day 2-3

The following day, my little one continued her residence on the couch.  She ate exclusively soft foods like pudding, Jell-o, and mashed potatoes. She said it hurt to eat, and it hurt to talk.

By the next day, she continued to depend on mainly soft foods, but started requested things with a little more sustenance.  She was sitting up more and doing art projects.  She would move around the house from one comfy spot to the next.  By Day 3, prescription pain medication wasn’t necessary.
Her ear continued to drain and the cotton and gauze needed to be changed every few hours.

Her doctor had said showering would actually be good for her wound behind her ear, as the shampoo would keep it clean.  She DID NOT want to get it wet.  It took a lot of bribery to get her into the shower.

Day 4-5

Total change!  She started seeming more like herself after surgery.  We did a little homework and even went out of the house to run a quick errand.  Although the doctor had only required her to wear the ear cup for two days, she was hesitant to take it off.

It was reassuring to see her back to her old self, plus she seemed to be in less pain.

Day 7

After a week, it was time to remove the packing from her ear canal.  The stitches were healing nicely. She had asked to be able to see the stitches, so we took a picture to show her.  In hindsight, I’m not sure she was ready.  For the most part she had been blissfully unaware.

She went back to school on Day 7.  There was still a tiny bit of bleeding draining from her ear.  A quarter of a cotton ball in her ear caught most of it.

Heading into surgery our goals: a healthy head and improved hearing.  Unfortunately, the cholesteatoma surgery only helped remedy the healthy head part.  During surgery, two hearing bones were removed.  That in addition to sound being conducted through the cholesteatoma have decreased her hearing to almost nothing in the affected ear.

Update: Her hearing did decrease to severe loss post surgery.  However, there were some incredible improvements one year post-surgery.

One thing we hadn’t anticipated was a need for follow-up surgeries.  She will require an additional, albeit much shorter, surgery in six months.  Time wise, we’re looking at a 2 1/2 surgery.  The goal then will be to put in bone implants and check that nothing has grown back.

Despite our desire for this all to be done, it sounds like we’re in for a little bit longer.

Update: At the 6 month appointment, her ENT has decided to forego the reconstruction surgery.  She’s thriving without it!

The scar is minimal and really not noticeable as it is completely behind her ear.  We keep regular appointments with the ENT to monitor her ear health and also regular hearing aid appointments to keep those in top shape.  

Looking for more posts on cholesteatomas?

Loss in flux. Read more about Hearing After a Cholesteatoma.

Explaining hearing loss to a child can be a great opportunity to build understanding. Try one of these Books about Hearing Loss.

Again, I’m just a mama and my art degree shouldn’t take the place of a doctor.  But I know how scary it can be to go into a procedure without knowing what to expect.  Hopefully sharing our experiences will be helpful for you and your family.

If you have any questions, I’d be happy to share any details I can.

My sweet Harper loves glitter and unicorns.  She is a whiz at math and has a tremendous gift in art.  She’s easy to get along with (total middle child), a great snuggler, and a collector of little things.  She’s obsessed with toy videos on YouTube.

Harper also has a cholesteatoma.  Without getting too doctor-y, a cholesteatoma is an abnormal cyst formed from years of chronic ear infections.  The cyst eats away at whatever it touches–in Harper’s case the three delicate bones of the middle ear.  Harper’s cholesteatoma is isolated, thankfully.  Worried mothers in the middle of the night should not consult Google.  There are so many worse cases.

Glasses!

A post shared by Melanie Walsh (@clementinecounty) on Aug 9, 2016 at 6:29pm PDT

For nine months, we’ve been working towards getting Harper a healthy head.  A surgery in November removed the part accessible from her ear canal.  Today, Harper has surgery to remove the remainder of the cyst.

Thinking back to that November surgery, it was when things got a little crazy.  She was supposed to be having tubes put back in.  The ear infections have dramatically decreased.  But her ear drum didn’t fluctuate the way it should.  The thought was too much fluid behind her ear drum had built up and hardened.  It was supposed to be a 15-minute procedure and then her hearing would be normal.  As the ENT called me back to recovery, and started his explanation with “Well…” I knew it wasn’t good.  It’s not cancer, I remember him saying that.  The rest was kind of a blur.  I made him spell “cholesteatoma” so I could write it in the notes on my phone.

As we head into the hospital today, there’s so much still uncertain.  How much bone will need to be removed? Will bone implants be needed?  Will she be able to hear?

The primary goal of the surgery is a healthy head.  The secondary goal is to protect her remaining hearing.  Her hearing diagnosis is in flux.  Previously, my darling little girl had mild-moderate unilateral hearing loss.  More recently, her affected ear registered moderate-severe and her “better ear” at mild-moderate.  Again, not trying to be too doctor-y.  That means she can’t hear conversational level speech from her left ear.  Unless you’re facing her and speaking loudly, she can’t hear you.  Until the cholesteatoma is removed, her audiologist is waiting for fitting her with a hearing aid.  I hate that she’s spent even more time missing out on so much around her.   Her right ear, the “better” ear, will be examined during surgery to investigate the decline in hearing.

Much to her credit, Harper is very good about asking you to repeat yourself if she didn’t hear you.  Of course, she has to know that she missed you saying something.  If you’re behind her, I’ve noticed she doesn’t pick up what you’re saying very well.  She uses lip reading to fill in what she may have missed.

At seven, I marvel at her maturity.  She admits she’s scared and sad.  She knows she can’t hear, and that surgery is the only option to protect her from further damage.  But thankfully, she’s also blissfully unaware of all the things on Google.  The things that weigh on our hearts as we send our darling daughter into a four-hour surgery.

As challenging as this day is for all of us, it’s been a long process.  It’s almost a relief to be able to move past this and figure out what the new normal will be.  One day I’ll sit down and write all my thoughts on the challenges of such a diagnosis as a parent–the heavy heart, the mom guilt, the intense worry.  But for today, I’m starting here.