Meet Amy Mackey. Amy is a two-time survivor of cholesteatomas and a Ponto Plus and Ponto Streamer wearer. Amy is a writer, so we could think of no better way for her to share her story than her written words below. We’ll also be hosting a live online discussion with Amy on Thursday, May 1 at 1pm EST– RSVP here.
I’m a Bilateral Cholesteatoma Survivor
By Amy Mackey
As an infant and small child I suffered from repeated ear infections. I remember my mother used to back me up against the refrigerator to give me nose drops instead of the now used ear drops. She always told me she knew when I had an ear infection; my attitude went south. Under the age of five I participated in a group study for bilateral myringotomy (tubes in both ears). From what I understand I was the only one in the control group to not outgrow my ear problems. Over my tender years I had repeated myringotomies, doses of antibiotics, ear drum lancing and occasionally my ear drums would burst on their own from the pressure of fluids.
At 17, I went to my ENT thinking I was suffering from yet another ear infection. I was sent immediately to the hospital for x-rays. Cat scans or MRI’s were a thing of the future. Returning to my ENT, after office hours with my suspicions raised, he told me I had a cholesteatoma in my left ear. I was in a five hour surgery less than twelve hours later.
I spent several days in the hospital with extreme vertigo, numbness in my tongue and static in my head commonly known as tinnitus. I was grateful my facial nerve was spared. It took months to relearn to walk, sit or stand without listing like the Titanic. It was a good thing I couldn’t feel my tongue, because I chomped on it on a daily basis. But time heals and my white-walled hair grew back in, the vertigo mostly subsided, I adjusted to a tongue I could not feel and a hum in my head. I was young, tenacious and determined. Even with my one-sided deafness I learned to cope early on. Don’t go out in the wind without covering my deaf ear for it would bring on the vertigo. Strategically place myself to hear better in groups or classrooms. Sound direction was a big challenge, and I learned to train myself if I thought it came from the right I would look left, the opposite of what my brain was telling me.
Over the next twenty years, I continued to struggle with many ear infections in both ears, cleanings, antibiotics and ear drops, as well as my ‘good’ ear drum being lanced and drained on a regular basis. Then, I had about 15 years of only minor incidences. This was the calm before the next storm.
Last July, I went to a dinner party and immediately noticed I was struggling to hear. It was like someone had flicked a switch and turned off my hearing. There was no gradual decline. I had no pain, no drainage and no odor came from my ear. I felt some pressure in the right side of my face on my cheek similar to a sinus infection. I assumed my ear was full of fluid.
Over the years I had developed a few techniques to self diagnose my ear troubles. I would tip my head upside down to see if there was fluid in my ear. I did this and got the classic sound and feeling of fullness and fluid present. I was also taught by my surgeon to plug my nose and gently (I emphasize gently) pop my ears keeping the eustachian tube open to allow pressure to equalize and drainage to release through the eustachian tube. I couldn’t pop my ear. A holistic doctor many years ago had also taught me a technique to wash my hands and take a finger, reach inside my mouth and gently massage the orifices (nasopharnx) behind the roof of your mouth to bring forth drainage. That did not work either. So, thinking it was a sinus problem, I tried hot steam with eucalyptus oil and a towel over my head. These trials and errors lasted for almost a month. Our raspberries came on in the garden, our first harvest, and they tasted horrible to me, almost metallic. Little did I know, this was another sign things were amiss. Then I began having terrible migraine headaches. I made an appointment with my ENT. In the back of my mind I kept thinking, “could it be another tumor in my good ear?”
My regular ENT that I had been seeing for 25 years was downsizing, so I was introduced to a new partner, Dr. Kyle Tubbs. He came into the room and I casually said to him, I think I just need my eardrum lanced so it can drain and I will be on my way. I explained some of my history, and he took a peek in my ears and said he would like to look under the microscope. After looking under the microscope, he very solemnly told me I had a cholesteatoma in my right ear– my ‘good’ ear. My worst nightmare had come true.
I was horrified for I am profoundly deaf in my left ear from the first tumor 36 years ago. I sat there and cried thinking I will be deaf for the rest of my life. I do know some sign language, but as my surgeon pointed out, not everyone does. My children know sign, but my husband doesn’t. How am I going to communicate? How big is this tumor and has it eaten all the hearing bones like the last time? Over the next few days, and after the CAT scan, I began to accept my deafness.
A week later, I had a hearing test and a follow up appointment. We discussed if I should go to a bigger city to have the surgery, possible reconstruction of my middle ear and the eligibility of a bone conducting implant or Bone Anchored Hearing System (BAHS). After some debate, we decided Dr. Tubbs could do the tumor removal here in Montana. My audiologist and surgeon concluded I would be a prime candidate for a BAHS implant after the removal.
Thirty-six years ago there was not much available to aid in my hearing loss. I began researching bone conducting implants. There was not a lot of information out there, but I was amazed at what I did find. It is so simple a concept, yet I couldn’t imagine how I could hear with it vibrating throughout my skull. Everyone would ask if it was a cochlear implant. I kept explaining that it’s a bone conduction titanium implant that is placed in half the depth of your skull with a sound processor attaching to the abutment that sticks out of the skin. The sound processor picks up the sound and vibrates it to the auditory nerve through the bone. The implant should last a lifetime and if it becomes loose, it is easily removed and placed in a new location.
Dr. Tubbs called me about five days later and suggested that I have the BAHS put in first, so I would not be totally deaf when I had the tympanaplasty mastoidectomy (tumor removal). He also decided I needed the more aggressive canal wall down surgery for the cholesteatoma– just like my left ear. The aggressive surgery, less than 10% to 20 % have a reoccurrence, whereas the less aggressive has an 80% chance of returning in the first two years. I agreed; I never wanted to go through this again, twice is plenty. He also assured me if it did reoccur it could be taken care of in the office rather than major surgery.
On September 23, 2013 I had the implant surgery. A simple one hour surgery; commonly done as an out-patient. I think the hardest part of the implant surgery was the five week wait for the sound processor. I had endured four months of nearly total deafness and 36 years of single-sided deafness. I had no fathomable idea of what was to come.
Currently, I could not hear my own footsteps, not a good thing living in bear country. Nor could I hear the phone ring, water running, the cry of an eagle, vehicles running or many every day life noises. The tinnitus had taken on several forms and was now in both ears creating static, ringing and pulsating with my heartbeat. Migraines were almost a daily occurrence, totally debilitating me and turning my right eye red. Conversations were almost impossible, even in a quiet setting. In large groups it was horrifying, all this garbled sound, not understanding anything, getting bits and pieces and trying to make sense of it was physically and emotionally taxing.
My grandson, Michael, went with me on the day I received my Ponto– both of us bubbling over with excitement. The first voice I heard was Michael’s. It had dropped an octave in the four months since I had lost my hearing, no wonder I couldn’t hear him. I cried and instantly realized how much I had been missing with my hearing loss. When I drove my 35 miles home, I had my window down and noticed I kept flinching when on-coming traffic passed me. Everything was so loud – it was a whole new world.
In November, came the cholesteatoma removal. I feel so fortunate. Dr. Tubbs, who is not only a great surgeon, but a kind and compassionate physician, successfully removed the cholesteatoma in four hours. He was able to repair the single hearing bone that the tumor hadn’t destroyed with a fascia and cartilage graft to retain what little hearing I still possess. The area for reconstructing the other bones was too small, so I was not able to have middle ear reconstruction. He also grafted a partial eardrum to keep bacteria from entering the eustachian tube. Again my facial nerve was spared, but not so lucky with my tongue and I have lost most of my sense of taste. I am five months out now, still healing and adjusting to hearing more than I have in 36 years.
I consider myself a survivor and am grateful on a daily basis. I still have the many forms of severe tinnitus, the occasional vertigo, a mild form of recruitment (distortion of speech), fewer migraines and a tongue that no longer tastes. But thanks to the Ponto Plus Power and Ponto Streamer, I can hear. It has virtually changed my life.
Would you like to hear more about Amy’s experience? Join us on Thursday, May 1 at 1:00pm EST for a live Hangout On Air with Amy. Have questions for Amy? Let us know in the comments section below or on the event page.
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My 5 year old daughter had Cholesteatoma removed last month on her ear that was already implanted with a cochlear implant. Now we are afraid she is going to lose that implant. It’s awful. She is terrified of her doctor, so it makes it a nightmare anytime we go for a checkup. If she loses her implant, it means loss of some speech sounds for her. This is just devastating.
This was great information. Hearing from someone that has dealt with what I’ve been going through my entire life is amazing! I’ve felt like nobody understands or knows anything I’ve gone through. I so far have had two cholesteatoma’s in my right ear. Two surgeries later, I am eagerly waiting the bone anchor that wasn’t an option after my previous surgery. More info from people dealing with this condition either themselves, a friend, or a loved one. Thank you for telling your story and making it available to anyone out there!
I also have has cholesteatoma from chronic ear infections as a kid. I have had the disease 3 times and 3 major surgeries on my ear due to how bad it was. They stated it was one of the worst they have ever seen. I am deaf in my right ear. I got a tube put in my left as my eardrum started retracting in that ear but they were able to stabilize it. Now if I get the disease in my right ear again they can remove it in office due to them taking everything out of my ear pretty much. I definitely know the struggle of not being able to hear especially at 26. well it broke my hearing bone at 22 so.
Very sorry for what you’ve been through. Do you wear any hearing device to help you with your single-sided deafness?