Being a parent of my kids has made me very good at holding my breath.
My son has his third major ear surgery on the horizon. A tympanomastoidectomy to be exact.
Last year I wrote about how my Littlest was sick. I wish my oldest just had a fever and a cough which is something that I know that will go away within a few days.
Anxiety has the ability to make me feel preoccupied with a looming feeling of restlessness, among other things. Real worry, the kind where you know exactly what is at stake, it’s exhausting. It’s not productive, but it can take over. Worrying about my kids is like going ‘all in’ during a card game, it takes all you have, and you hold on to the hope that all will be ok.
The summer before his 7th grade year, my son had a string of ear infections. This is very much the ‘norm’ for him.
His first ear infection was at 6 months old. While on antibiotics, he woke up one morning, and his left side of his face was drooping. We took him into the ENT specialist, where the doctor stated that there may be a tumor, and referred us to get a CT scan done of my baby’s head. I had to excuse myself from the doctor’s office while he was talking because I started crying from worry. The CT scan came out all clear thank God. My son’s ear infection never went away though, and he had his first ear tube surgery at 9 months. Over the years he had two more sets of ear tubes, as well as his adenoids taken out. He’s always had ear problems, so when he continued with ear infections into his 12th year, we were not overly concerned. My husband took my son in to our pediatrician at the end of the summer before his 7th grade year for yet another exam for his ear, and I asked him to see what the doctor thought about us going back to see the ENT since there had been so many infections recently. At their visit, she did not seem concerned, and said ‘sure’ in regards to going back to have him examined by the ENT specialist.
We hadn’t been to his ENT for years. Back at this office though, we were in the exam room, my son, both daughters, and I, backpacks stretched out over the room with homework started. I was prepared to be told that he needed ear tubes again. More of an inconvenient pain, but not horrible.
The doctor looked into my son’s right ear with his equipment, and quickly met my eyes afterward and said “I am 99% certain of what this is, and if I am correct, he is going to require major ear surgery.” I think I will always remember those exact words. Major? Not just ear surgery? You throw major on there, whole new ball game. My son had what is called a cholesteatoma growing in his ear. It was explained to me that this was a non-cancerous tumor of sorts. It is made of the same materials such as our fingernails or skin are. It’s caused by excessive and repeated ear infections. If not treated, it can be spread into the cavities of the brain, which is seen in children that have come from third world countries that had not had medical attention for this problem. The only way to treat cholesteotoma is to physically remove it. There was no way to know how intrusive it was, or how much it has spread until you have opened up the ear during surgery to investigate. Our son’s ENT doctor who had worked to put tubes in his ear as an infant, and during his elementary years, was now going to perform major ear surgery 12 years later.
Fast forward to his first surgery, January, 2013. Our son’s doctor came to us in the waiting room, explained that the cholesteotoma had been ‘EVERYWHERE‘. It had encased my son’s inner ear bones, and therefore all bones had to be removed. It had spread into crevices, where the doctor had to reach and clean out. He had to repair and ‘make’ a new ear drum for my son. When I step back and take away the emotions involved, it amazes me that this all can be discovered and done. I am so thankful. The official terminology for what my son had done during surgery is a tympanomastoidectomy. He explained that with this surgery, there is a possibility that my son could experience vertigo for a short duration, or chronically. He then explained that his eyes were not showing signs of this, and that he seemed to be doing very well in recovery.
When we got to see my son, he had what the doctor likened to a turban on his head. A huge hard bowl shaped protective shield covering his ear, and gauze wrapped around his head to hold it into place. Poor guy was miserable, in pain, sick from the meds. But he was awake, and he was ok. So thankful.
At home recovering with his cat right next to him.
At our first follow up a few days later, the doctor was happy to see that my son was not experiencing any signs of vertigo, and that he had a small amount of hearing (5%) in his right ear. He went on to explain that hopefully he got all of the cholesteotoma, and if so, that we can look towards rebuilding his ear with prosthetic inner ear bones in about a year. He explained that cholesteotoma is like crab grass, even if a little bit was left behind, it can grow back and spread. He said the crevices in the inner ear are endless, and that he hoped he had gotten it all, and was really happy with the results.
Our remaining follow ups were great, after two months, he could return to sports, eventually he was able to return to swimming and all restrictions were erased.
I believe it was about 9 months after his surgery where at his follow up it was determined that the cholesteotoma was back. Surgery was necessary again. We were so hoping, as I know his doctor was too, that we’d be scheduling the surgery for rebuilding of the inner ear. We were now scheduling a surgery for the same invasive, painful, stressful surgery as 9 months prior. This time though, we had a new challenge. My son. He knew exactly what was to be expected of this surgery now. He was scared, worried, and stressed out. This broke our hearts in the midst of our worry.
The second surgery presented a new worry. That there was a possibility that if the doctor felt there was too much cholesteotoma, too much damage, there is a procedure where all of the inner ear is removed. He explained this is a one way street, hearing restoration is never an option. He also explained that this is something that he would never prefer with someone young, but wanted us to know the possibility.
Fast forward to the second surgery, December, 2013.
Strange how music has always caught me. I can relate music to memories, and I feel that music can bridge emotions. While in the waiting room during my son’s second major ear surgery, the TV played a morning show that the Goo Goo Dolls were guest appearing on. They played the song ‘Come to Me”. I listened quietly to this song, thinking that I would remember that moment forever. That song had been playing repeatedly on the radio recently. And we made up our funny lines of ‘come to me my Swedish friend’ because it kinda sounds like that, and that’s how our family always sang it out loud in the car. So, I was soothed by singing in my head ‘come to me my Swedish friend’, it brought a small smile to my face, and a feeling of peace while my son was deep in his surgery.
The doctor came out of surgery to meet with us in the waiting room. We’ve gotten to really love this doctor. Some feel he’s rude, short, bad bedside manner. These are the comments I’ve heard or read. He’s a doctor who is very busy, is old school, and we have learned has a great love for his own family, and is very, very kind. He has cared for our son in a way that we are forever indebted to him for. He came out, sat by my husband and I, and said, ‘I had to make a decision in there. I thought about your son, I though about your family, who you are. I wanted to give him another chance. I think we can do this. I feel good that I got it all. I wasn’t ready to say that’s it.’ And there we had it. I was fully expecting to hear that he had to wipe out my son’s entire inner ear, with no hopes of ever hearing in his right ear again. He went to bat for my kid. Because he’s old school, we went old school and after both surgeries wrote a very sincere thank you letter.
At our month follow up appointment after his second surgery, the nurse was asking the regular round of questions and pointed out how large my son’s file is. His doctor said ‘I have elderly patients that don’t have a file as big as yours! You’re 13!!!’ He examined my son’s ear, rolled his chair away from him, and said ‘I am thrilled! THRILLED!’ He did a little tap, tap, tap on his legs with his hands, and was giddily smiling. He explained that my son’s ear, with all of the patch repairing that he had done during the surgery, looked better than he could have ever expected. He said that this surgery’s success is 1% skill from the doctor, 99% luck. I disagree with that of course. He was so excited! He even pointed out that we don’t see him get excited, he was EXCITED!
At a regular follow up in 2014, as my son’s ear continued to look good in it’s healing, ear drum staying in tact, ear canal staying as it should, we began to talk about a future surgery where he may be able to restore partial hearing to my son using prosthetic inner ear bones. My son told the doctor that he didn’t want to have the surgery over the winter as we had the previous two years. He was now a freshman in high school, and he explained to the doctor that he really wants to try out for the high school baseball team, and the 2-3 month recovery period following surgery wouldn’t allow for that. The doctor looked at my son, and said, ‘that will be fine, we can wait.’ My son questioned whether or not he even had to have the surgery, that he is fine with just hearing with one ear. Of course he’d rather opt for not having to go through the horrible pain, a new scar to replace the one that currently rides from the top of his right ear all the way to the bottom along the backside of his head behind his ear, or to sit out of any activity which could lead to contact for a 2-3 month period. The doctor explained that putting aside the opinion that my son is fine without hearing in one ear, the doctor needed to go back and open up his ear one more time to make sure there was no cholesteatoma left. And at that time, it may be possible to rebuild the ear. But that even then, there are times that the rebuilding does not work. This was a blow to me. I had been naive and thought ‘oh, he rebuilds the ear and then my son hears again.’ I did not realize that it was not a for sure thing.
Incision a few days after the second surgery.
We have continued to have two month follow ups regularly after my son’s second surgery. Each time I go silently terrified, wondering if he is going to say the cholesteatoma is back. During an appointment last Spring, the doctor looked into my sons ear as I held my breath, and said ‘there’s a cholesteatoma on his canal.’ I didn’t breath, I didn’t talk. I just watched and waited as my son made a stone face through the pain of the doctor cleaning out his ear so he could have a better look. As he had that better look, he stated ‘I may have spoken too soon, it may be cartilage that has grown, not cholesteatoma.’ And with that, I breathed again. I don’t know everything there is to know about this type of problem, but I do figure that if there is cholesteatoma again, the chances of more, and more, and more surgeries gets higher, while the chance of my son ever hearing through his right ear and having this all behind him gets lower.
I know that things could be so, so, much worse. The doctor himself told us after my son’s first surgery, as I had tears welled up in my eyes because I was so surprised at the magnitude of what had just been performed, he said ‘It’s going to be ok. He doesn’t have cancer, it’s his ear, he’s going to be ok.’ And it is. I fully believe that. Although, there is the reality that, this is my kid. He’s scared, stressed, and doesn’t want to have to have this surgery again. Of course, things could be so much worse, I want to acknowledge that. But at the same time, I have to take my own advice that I have given others; that this is one of our worst things that has happened to one of our kids. That it is horribly worrisome and scary, even though it could be much worse.
I look at my son and see how resilient he is. You would never know he can’t hear out of his right ear. There are times if he’s on the pitching mound, and a coach talks to him from the dugout, the coach has to be reminded that he can’t hear from that ear and that’s why he isn’t paying attention, it’s not disrespect. My son is super funny, his hearing has been the butt of a joke from time to time, always taken well because it’s out of love. After his first surgery, they played the game ‘telephone’ in his English class. The telephone message was passed into his right ear, and after he said ‘what?’ twice, he turned and passed on a message. I asked him if it was the same as what he had heard, he said he had no idea, he just made something up. Hilarious. He certainly does not want special attention nor treatment.
During a regular follow up in the summer of 2015, when all was still clear in his ear, no cholesteatoma was found, his doctor talked about scheduling a surgery to repair and possibly restore hearing. My son asked his doctor if he HAD to have surgery again. His doctor looked at him, and explained that my son was at an age now that in some cultures is considered to be a grown man. That he feels it is appropriate for my son to have a say in whether or not to have this surgery. It was not necessary to undergo surgery unless there was a returning cholesteatoma, and that he could even decide to have a restoration surgery as an adult if he chose to. Yet again, I had tears in my eyes as we left the doctors office, because I did not know that it was possible that we could be done with surgeries. I thought it was just when will the next surgery be. As we got into the car, my son looked at me, huge smile on his face, relishing in the moment of being old enough to participate in this choice, “Well, I’m definitely not having surgery!”
And that’s where we are. We had one more recent follow up, all was clear. A hearing test was performed and it was the exact levels (approximately 5% hearing in the right ear) as it has been for the past few years. Which, as the doctor explained, is very good. If there had been an increase of hearing in that ear, it may mean that there is a growth that is allowing for sound to bounce off of and produce some hearing. The gigantic worry weight of a looming surgery is off of our back. If he chooses to have a surgery in the future to see if he can regain hearing in that ear, it will be up to him. We, as parents went back and forth wondering if it was something we should try and push him to do at this point, feeling that his hearing now would be incredibly valuable. But, in the end, the stress, pain, and worry that our son would experience with another surgery, one where hearing is the expected outcome, yet not a guarantee, it’s just not worth it. As much as it seems like just yesterday my son was a 9 month old that had his first set of ear tubes put in, he’s almost 16 years old now, and I’m glad his doctor put a lot of the decision in his hands.
This post was long, I know. It is my hope that it can help others who may have just been told their kids have a cholesteatoma, or need major ear surgery. Here’s to hoping that his ears stay clear and free of cholesteatoma forever, and that any future games of telephone will be headed the direction of his left ear!!!