Tympanoplasty in Toddler

Sorry to leave you all hanging with my last blog entry. It’s just that we were going through some serious internal conflict about our decision at that point. Seeing that your son’s ear has been detached and reattached is extremely traumatic. And then watching it turn every shade of dark dark purple. Horrible. So, in all, I’d say this surgery has been way more dramatic, traumatic, and problematic than we’d previously expected. Indeed, I had to pull Josh from school and daycare for the next three weeks because a cold, especially one with a sinus or ear infection, would place the potential success of the tympanoplasty in jeopardy. Moreover, Josh is under lifting, bending, and exercise restrictions. I am not sure how his school or day care would  enforce this especially since the weather is nice and both places take the kids outside to the playground every day (in the case of my Aunt and Uncle’s daycare, their whole yard is like one big glorious play ground). So, I’ve definitely had to make some quick adjustments in my schedule and no subbing yoga for a couple of weeks. I still need to squeeze in the preparation of a yoga workshop, which I am presenting in two weeks, on using yoga to support life transitions. Hmmm. Funny how the subject of this workshop plays directly into my own life right now. Fortunately, Hannah finishes her first year of college in two days and will be home to help. Yay!

All of this ear drama has sure made Josh’s eight crowns and root canal seem like a cake walk. I was brushing Josh’s gums this morning and he started to cry. I was like, “oh yes, he just got eight crowns placed below his gumline three days ago–of course it hurts to have them brushed.” But we still have to do it. Just as we have to place ear drops in Josh’s right ear three times a day even though he cries and says “no, I don’t like that” whenever he sees the toothbrush or bottle of ear drops come out.

As far as the tympanoplasty goes, we did opt for the titanium prosthetics to replace Josh’s incus and malleus. This decision was done without any internet research or careful weighing of the benefits and contradictions. I remarked to Chris yesterday that it is ironic how I spent three weeks diligently researching alternatives to silver crowns for a toddler and yet, I just go ahead and approve a dramatic replacement of middle ear bones on the fly. This decision, my friends, was purely based on a “strong intuition” (and not mine, necessarily but Chris’s–definitely more reliable as Chris has some uncanny sense for finding “true North”). And so rather than running around second-guessing the decision (like I’ve done for the past few days), I am instead going to embrace the decision and stop focusing on what could go wrong and instead switch to focusing on what could go right. Positive thoughts.

Since the procedure, I’ve also spent much time researching the pros and cons of a tympanoplasty itself. Another decision that was only made on the Monday prior to surgery (although hole needed repairing, we maybe could have put it off a few years).  I am realizing that the recovery from a tympanoplasty is rigorous, if not grueling–as well as lengthy . . . up to six months. And just adding in the titanium prosthetics didn’t do much to increase the difficult road to recovery. It seems that one of the critical issues is whether the graft takes and allows a covering to form over the hole in Josh’s tympanic membrane. The cartilage graft came from behind Josh’s ear and I see a dent behind Josh’s ear where this came from. The graft works like a lattice, allowing Josh’s skin to bridge an otherwise unbridgeable gap. It is so fragile over the next few months that a bad sneeze could dislodge it. So please keep the prayers coming for a full recovery.

I am updating this post to include this link to a fantastic site on Typanoplasty recovery.

My other concern in all of this is the flying prohibition. I am not sure yet whether this puts our John Tracey plans at risk. I am waiting to talk to our ENT at our May 24th post-op. Until then, praying for no colds and trying to keep Josh pretty still (which goes against all of our OT work–sigh). Also, while Josh’s right ear is recovering, no hearing aid in right ear and his ear is filled with so much blood and packing material that when his left ear is down in the pillow, he has virtually no hearing right now. So I guess its two steps forward, one step back. But overall moving forward.

The stitches--photo take day before ear turned purple.


9 thoughts on “Tympanoplasty in Toddler

  1. I’ve heard that tympanoplasties can be really, really tough. Sending every prayer and positive thought in your direction so that he remains “sneeze-free” and everything heals as quickly as possible. Nolan has a permanent hole in one eardrum (it’s currently sporting a tube so we’re fine that it is there) – not sure what we’ll do if he no longer needs tubes and the hole remains in his ear. It’s not a massive hole, though.. so we’ll probably just leave it. How long will Josh have the packing in his ear? Surgeries are so hard on kids (and parents) – Nolan hates ear drops with a passion and will scream from pain. I’m not sure why they hurt him so badly, but they do.

    I hope this is the last surgery Josh ever needs, and prayers for pain relief and healing!

  2. Hi Heidi! Sorry I’ve been so out of touch lately. I’ve been thinking of you, sending prayers your way, and wondering how everything was going. I’ve just been catching up on all your blog posts. Wow! I’m so sorry that the surgery(ies) ended up being so drastic and traumatic! Poor Josh–he’s being such a trooper. How wonderful that Hannah will be home to help you; I’m sure her support means a lot to you. You’ve got so much weighing on you these days! Sending big hugs your way.

  3. Oh my, I have found your site and my heart is heavy, for you and for me both. You see, my 15 month old daughter was diagnosed with a congenital cholesteatoma. This is essentially a middle ear tumor but not cancerous, however it destroys the hearing bones and anything else nearby. It can even get into the brain. So as far as I am concerned it is as if her bones were messed up from birth anyway because she’s likely to lose them in surgery… Hers is quite extensive (CT to show the extent), and she faces a very nasty road ahead. I have spent so much time researching and I am building a site for this particular condition (http://www.bornwithcholesteatoma.net); I have had my nose in the medical journals and Dr. sites since I am getting my master’s in a health field. She will have a surgery similar to Josh’s (behind the ear) but also removing the mastoid and likely reshaping her ear canal. You may actually find the site interesting with what’s there so far, including some blogs I’ve done… I have found other parents with little ones w/this to discuss with, and I have a pretty good idea about some of what lies ahead, but there is so much more I have yet to understand. Most of these kids have faced years of surgeries and life changes like losing hearing in one ear (conductive hearing loss). Fortunately it is very rare to be in both ears, and she has one fully functioning ear. Anyway, I’m trying to catch up on your posts to see how it has gone for him. I have a feeling we will keep talking in the future…

    1. So sorry to hear about your daughter’s diagnosis. I didn’t even know about cholesteatoma until researching the recovery from tympanoplasty. In this research I stumbled upon a very helpful site begun by Richard Mondella after he had a tymapnoplasty at age 18. On this site, he describes in detail the healing process. And because there are no other such sites out there, many other people throughout the world recovering from tympanoplasty (some with cholesteatoma) have contributed to the site. The only problem is that it is all in the form of comments so you have to scroll and scroll and it is not terribly searchable. Here it is (if you haven’t already found the site):

      Had I read this site before the surgery, we undoubtedly would have held off on the surgery for a few years. At least until Josh could talk to us more about what he was experiencing. It sounds like you don’t have the luxury of waiting with your daughter. In fact, it sounds like time is of essence. So my heart and prayers and hope all go out to you and your daughter. I will try to keep up on your site to see how she comes out. I hope she has a wonderful outcome.

      Josh has been sick with a bad viral infection this past week. I am not sure how it has impacted the surgery. He has a hearing test on July 30th and his post-op with his ENT on August 1st. I’ll definitely supply an update at that time. I just have chosen not to detail all of the ups and downs of recovery here on this site. Suffice it to say, it has been one of the most difficult times of my life (and I believe for my husband as well). It helped when I found Richard Mondello’s site and noted that this time of surgery causes all sorts of panic and anxiety in adults too. Cause you never know what little thing may cause this touchy surgery to “fail.”

      1. Thanks for your reply. I had not come across Richard’s site but will read that as well. Yes, I agree – it will be hard for me to know what she is experiencing without her being able to talk, but we don’t really have a choice to wait (surgery is scheduled but still several weeks away). I am sorry to hear it has been such a challenge for you in addition to his other considerations. I know in this too you’re not alone, yet it’s a lonely path…

  4. It is a lonely path for sure. And there isn’t really anyone who can understand what you are going through except perhaps parents who have had young children go through surgery. Let me know when the surgery is scheduled for, if you’d like, and I’ll put it on my calendar so that I can send out lots of prayers, love, and good energy that day!

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