Wednesday, July 9, 2014

Ian's trip to Cincinnati...Otolaryngology

Roger, Ian, and I left for Cincinnati Monday afternoon, so we could spend the night close to the hospital where we would be taking Ian the following morning.  We could have left home really early Tuesday morning, but we weren't familiar with the area and we would have had to pass through rush hour traffic somewhere between here and there.  We didn't want to miss the appointment!
We are so pleased with our new doctor.  We got there, registered, and were seen by the doctor at the exact time of our appointment!  We didn't have to sit and wait for an hour!  Amazing!  I had typed out a timeline of all of Ian's illnesses and surgeries, and the doctor was grateful.  We talked for a few minutes and then he said, "Let's go to the other room.  I'm excited to see what's going on in there!"  I love his interest in Ian's case!
He took us to another room with special equipment that would allow him to magnify things to see better, but also enabled us to see inside Ian's ear on a TV.  It was really cool!

The appointment:
Both of Ian's eardrums are retracted.  That means they are both being sucked inward.  This, typically, happens when there is fluid in the inner ear, which Ian has in both ears.  There was mild retraction in the left ear, and more severe in the right ear.  The doctor does believe Ian had a cholesteatoma, which is a growth in the inner ear that can do a lot of damage.  After looking in Ian's ear, and looking through the CT scan, he sees no evidence of a cholesteatoma at this time.  The cholesteatoma was removed when Ian got tubes in his ears 3.5 years ago.
The doctor said that Ian's ears look "pristine" when looking at the CT scan.  This is great news!  The bones are there, and they are not damaged.  He has no abnormalities in his ears.  Ian's eustachian tubes were cloudy on the CT scan, which could be the reason that he has trouble with fluid in his inner ear.  As he grows this should resolve, but it is a problem right now.  This is the reason many kids need tubes when they are young.
We did another hearing test in audiology because the doctor was concerned with the results with the tests from the February vs. March testing.  There was a big difference between the two tests.  The results from yesterday showed very similarly to the March testing, which we thought was more accurate anyway.  Ian has severe to profound hearing loss in his right ear.  With fluid in his left ear at this time, he also has minor hearing loss in his left ear.  We talked to the audiologists who talked to us about doing a hearing aid consultation.  With fluid in his ear, and severe hearing loss, including nerve damage, they were unsure if some hearing aids would be helpful because they thought the sound would be distorted and make things worse for Ian.  It is possible that a bone conduction hearing aid may be beneficial for Ian.  We may do the consultation in the future, but our doctor suggested we wait for now.

There is fluid behind both ear drums.  This does affect his hearing.  It won't matter much for his right ear since his hearing is so bad, but now he has a hearing deficit on his left side, too.  Ian may need a tube in his left ear to bring his hearing back up to normal in that ear, so he at least has good hearing in one ear.  The tube would release the fluid, his ear drum would no longer be retracted, and his hearing would be restored.

Ian has nerve damage in his right ear.  The nerve damage, alone, brings Ian's hearing down to a minor to moderate hearing loss.  The doctor thinks Ian may have been born with this damage.

Something is wrong with a bone, or bones in Ian's right ear.  The bones are not vibrating together like they should, which is creating the severe to profound hearing loss.

The doctor is confused by Ian's case.  He cannot see anything to indicate why there is severe hearing loss in his ear.  He is wondering if a small cholesteatoma is hiding in there.  We will go back in 6 months to see if anything has changed, and to see if there is still fluid in Ian's left ear.  If so, we will likely need to go back, so Ian can get a tube placed in his left ear.

Placing a tube in his left ear is likely.  The right ear is not so easy.  The doctor could explore and look for a cholesteatoma, or anything else that could be causing problems.  He could also fix the bones.  Even if he fixes the bones, Ian will still have significant hearing loss because it will only bring his hearing up to the level where the nerve damage allows hearing.  Yes, it is much better than where he is now, but he could probably wear a hearing aid that would bring his hearing up to close to normal.  We're not sure that surgery is the best option.
We have some questions to go through in the next several months...
Do we get the tube in the left ear?
Do we do surgery to fix the bones in Ian's ear, and then get a hearing aid to bring his hearing all the way up to normal?  When not wearing the aid, he could still have much better hearing than he has now, but still not good hearing.
Do we forego surgery altogether, and try to find a hearing aid that works for Ian?
Can we find a hearing aid that will work for Ian, without distorting the sound?

Conclusions for now:
Do nothing.  That was the doctor's suggestion.  We love that suggestion!  We love it that we are not being pushed into surgery!  No further damage will be done, so we have time to think through everything.  We will go back every six months for a while.  At our next appointment, the doctor will look again for a cholesteatoma.  Ian will also go back to audiology for another test to make sure his hearing is the same, and to check his left ear to see if we need to get a tube.  If there is still fluid and hearing loss in his left ear then a tube is probably going to be the answer.  We need to maximize his hearing in his left ear.  The doctor believes that homeschooling is a huge benefit for Ian.  Woohoo!  Kids who go to school, and have a hearing deficit, typically experience an academic decline when they reach fourth or fifth grade.  The doctor said we probably won't experience a decline since Ian will be home.  Wonderful!

Ian is happy, and healthy, and developing very well, which is really great news!  His speech is good, and he has no learning disabilities, so we don't need to rush into anything.  We feel so good about waiting to do anything, and going back in six months.  We are really happy with our new doctor.  He is excellent!  It's good to have some answers, and peace of mind.

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