Tag Archives: Cholesteatoma

Shit Just Got Real

I’m having a really bad ear day. I’m in pain. One of the nurses from the hospital called this afternoon to do my pre-op interview. Asked lots of yes or no questions – do I have these symptoms, do I have those conditions. Needed details on previous surgeries, specialists, allergies, medications. Gave me instructions I needed the day of surgery as well as the few more days leading up to it. I still don’t have a surgery time yet.

After I got off the phone, my breathing quickened. My heart raced. My eyes teared up. Shit just got real to me. There is a tiny crack in Miss Positive’s veneer…

My Health Update

Last November, I blogged about a mass that was found in my middle ear and ear canal, found by my ENT.  He referred me to a neurosurgeon who would take it out.  I visited two neurosurgeons, both of whom confirmed the ENT’s diagnosis – a cholesteatoma (grainy mass most likely made up of keratin cells) that has completely filled my middle ear, has torn away part of my ear drum, spilled into my ear canal, eroded away most of the hearing bones in my middle ear and has started to erode the bone separating it from my brain.  That bone around my brain keeps out infection.  If it were to wear away, any infection I get in my ears or sinuses could potential get into the brain and cause meningitis.  Both neurosurgeons agreed that surgery was needed to remove the cholesteatoma, but they each had different approaches.

I wrongly assumed that the surgery would involve going through my ear canal to get at the cholesteatoma.  In fact, it involves drilling a hole in my skull behind my ear to gain access.  The hole will be drilled near an important artery, so the surgeons have sensors that will go off if they get too close to that artery.  My skull may or may not grow back over the hole, but the surgeons informed me that no damage could be done if I get bopped there.

I have a blood disorder that causes me to form clots; I take a daily blood thinner for it.  This disorder can make surgeries a higher risk for me.  Usually, patients receive 2 surgeries – one to remove the cholesteatoma and a second one, after irritation and swelling have gone down, to insert the prosthetic bone.

Surgeon #1’s plan: First of all, he sent me to a hematologist to get a full work up on my blood disorder.  He wants the hematologist involved with my surgical plan and recovery to keep me safe.  He wants to reduce the number of surgeries I have to go through not only because of my blood disorder but also to reduce the number of times my skull is accessed.  Due to my blood disorder, he feels that performing the surgery in a hospital will be the safest place for me.  He plans to perform 2 surgeries at most and it depends on how bad the cholesteatoma is when he gets in there.  If it takes a long time to remove it and/or if the surrounding tissue is quite irritated and inflamed, he will go back for the 2nd surgery to add the prosthesis.  He will remove cartilage from the external section of my ear and use that to reattach my ear drum to my ear canal; he will also reshape my ear canal.  Instead of it being a cylinder that stops at the ear drum, he’s going to make the end of my ear canal a bowl that dips down below my ear drum.  This bowl will give him access to my middle ear so he can regularly clean out future cholesteatomas that grow.  Because it will come back.  It is impossible to get every single skin cell of it out and just one left will start to multiple again.  Every six months I will have to go back to the doctor so he can inspect my ear and clean it out as needed, fully awake, right in his office.

Surgeon #2’s plan: When I mentioned a hematologist, he said one was not needed.  Although he has not operated on someone with my particular blood disorder, he has operated on patients with more common blood disorders and he is confident that he and his staff can handle any issue that may arise during my surgery.  He will do it in two surgeries – one to remove the cholesteatoma and one to implant the prosthesis and sew my ear drum back to my ear canal.  I would have to follow up regularly with scans and each time the cholesteatoma returns, he would perform the same surgery to remove it.  He does not like to perform surgeries in hospitals; he feels there are too many germs in hospitals providing a high risk of infections.  Therefore, he has built his own surgical, outpatient center and would perform all of my surgeries there.

I have decided to go with surgeon #1.

The hematologist asked me more questions and checked for more symptoms than probably all the doctors I’ve ever been to, combined.  I really appreciated how thorough he was.  I have been experiencing dementia-like symptoms for 5 years and, with Alzheimer’s in my family, I was concerned I was experiencing early onset.  The hematologist sent me to a neurologist (different type of doctor than the neurosurgeons I had already seen) to get these symptoms checked out right away and I did.  Before being operated on, I wanted my neurosurgeon to have my whole health picture, especially if I was experiencing a brain issue.

The neurologist was wonderful; reminded me of McDreamy from Greys Anatomy.  ;o)  He was good looking and kind but efficient.  He didn’t have a physician’s assistant or nurse; he came out to the waiting room to get me and checked my blood pressure himself.  We talked for a long time about what I had been experiencing and for how long.  He also gave me a verbal test for dementia in his office.  I passed with 100%.  He said if it really was Alzheimer’s, not only wold I have not been able to pass the test, but I wouldn’t be able to care for myself right now because the progression of Alzheimer’s from the first sign of symptoms was 3-5 years.  Since I had been experiencing symptoms for 5 years, it was something else.

He ordered an EEG and an MRI (that would not be done until after the 1st of the year) and told me to relax and enjoy my Christmas and New Years.  I did not have Alzheimer’s and he would find the cause.  Because of him, I did enjoy my holidays.  After the tests, he said I have a normal brain with no signs of problems.  He said my symptoms were commonly stress related.  He could send me to a psychiatrist who would perform more tests to further prove that there was nothing wrong with me if that would make me feel better, but I declined.  There have been a number of big stressors in the last 5 years and I believe him.  Especially since my symptoms reduced tremendously after he told me to enjoy my holidays.  He said to do what I needed to do to reduce stress – prayer, meditation, medication – whatever I was comfortable with and whatever worked.

So, the hematologist, the neurologist and my general practitioner all cleared me for surgery and I now have a surgical date – March 31st.  I was disappointed it was not sooner.  However, if any of his other surgeries get cancelled between now and then, I will get moved up.  Please pray that my surgery gets moved up because more erosion has occurred while I’ve been visiting other specialists.

Thank you to all of you for your support, for checking in with me and for your prayers.  It has meant and continues to mean so much to me.


I’ve had this problem with my left ear for a few years.  It started when I was working a part-time at an after school care program.  Being around kids everyday, obviously I was exposed to more germs and 2 Winters in a row I got very bad cases of the flu.  Like, knocked on my ass for 7-10 days, no energy to move or do anything but in pain and so stuffy I couldn’t sleep much, bad.  I got my very 1st ear infection during this time and it didn’t seem to go away.  I was in pain for 6 months and bleeding from my left ear.

When the infection finally cleared, I had suffered hearing loss in that ear.  I went to an audiologist for a hearing test and he noticed a pin-size hole in my ear drum.  He said to give that time to heal, come back in a few months, then we’ll reassess the hearing loss and see if anything needs to be done.  Well, a few months later my ear was finally feeling normal, I had gotten used to the hearing loss and I never went back to have my ear checked.  *slapping myself on the wrist*

Then in mid-September of this year, my ear started hurting and my hearing decreased even more.  Over the next 3 weeks, the pain got worse; it felt like I was being stabbed in the ear.  I also felt like there was something stuck in my ear canal (the place where were not supposed to stick a Q-tip but we all do because we can’t stand to feel water in our ears).  So I made an appointment with an ENT.  After a round of oral and ear dropped antibiotics, hearing tests and a CT scan of my head and neck, I finally received a diagnosis on November 7th.  I have a mass in my ear.

What does that mean?  This mass, probably made up of harmless skin cells, has filled the space behind my ear drum, preventing the ear bones from vibrating normally, thus interfering with my hearing.  It continues to grow and pushed over my ear drum into my ear canal.  So, I really do have something in my ear canal and it has nothing to do with improper use of a Q-tip.  Phew!  Wouldn’t want to get caught by the ENT for that offense!  ;o)  This mass is also growing down behind and under my ear.  The mass is grainy, like sand, so as it’s grown, it has been rubbing away at my ear bones – another reason for my hearing loss.

How did this happen?  This can happen to people who have had ear tubes put in as a child (I did not) or who’ve had a whole in their ear drum at some point (I have).  Some skin cells travelled through that hole and have been multiplying.  The pain I feel is the erosion of my ear bones by the mass and it has subsided tremendously over the past weeks – a good and bad thing.  ;o)

What can they do?  My ENT said it will involve 2 surgeries, and I need someone more specialized than him to do them.  The 1st one, to go in and remove all parts of the mass and assess the state of my ear bones.  It is done in a hospital but it is only a few hours and will be outpatient.  The second surgery is to put in prosthetic ear bones/bone pieces to replace what has been eroded away.  Isn’t that totally awesome?!?!?!  Did you even know that prosthetic ear bones existed?!  I sure as hell didn’t!  I have appointments next week with 2 surgeons (because the hubs said if surgery is involved, then a 2nd opinion is to be had) to go over all my tests, listen to what their plan of attack is and, to basically interview them and see which one gives me the better vibe.

My ENT was great explaining all of this to me in detail and answering all of my questions.  I appreciated that he was upfront with me and was honest that this is a time sensitive issue, instead of being vague, referring me to a surgeon and leaving it to that doctor to tell me everything.  He assured me that this is a common issue and the mass is just skin cells.  Even though I never asked him, he said at least 3 times, “It’s not a tumor.”  Each time he did, I tried not to giggle because all I could think of was Arnold Schwarzenegger in Kindergarten Cop saying, “IT’S NOT A TOOMAH!!”  LOL!  That line kills me!

After he’d explained everything and answered all my questions, he said, “I gotta say, you’re handling this very well.  You’re so calm.”

“I don’t worry unless there’s something to be worried about.  You’ve explained everything to me so well and I’m just relieved to have a diagnosis that has a solution,” I replied.

He said, “I wish I could be like you.  I’m a worry wart.  I worry about everything!”

“That’s because you’re a dad; It’s your job,” I replied.  “It’s what my dad does and what my husband does.  So I don’t need to.”

Even though he said this is common, that cancer in the ear is extremely rare and this is just skin cells, he assured me that it will still be biopsied.  I asked if it could spread into my sinuses or throat since all of that is connected to the ear and he said no.  However, if left untreated, he can grow straight up into my brain or straight back into major blood vessels, so I should not delay on seeking treatment.  He also said that despite the efforts to remove the mass, a cell or two could be left behind and they would reproduce.  So, I’ll need regular CT scans (I forgot to ask how frequently) for the rest of my life to keep tabs on it.

I am so excited that an end is in sight!  I am at peace and confident because God will be with me and will bear any worries that may come up.  But there’s never such a thing as too many prayers, so I ask that you keep me in yours.  Thank you.

I’ll keep you up to date when I know something new.

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