Two and a Half Months Post Microtia Surgery

The drive from LA to Palo Alto has gotten to be second nature for me.  Ben and I leave at around 6:00 AM, we wave goodbye to the other kids, we put Star Wars on the truck's DVD player, and I hear him cute sounds (sometimes giggles, sometimes gasps while he's hiding under his blanket) coming from the back seat.  We stop at around 8:30 AM for McDonald's pancakes, sausage, eggs, yogurt, hash browns (him) and coffee (me).  And he takes a nap for an hour and a half.

We schedule our appointments with Dr. Roberson for around 3:30 PM, so we have a couple of hours of rest between when we arrive in Palo Alto (around noon) and when we need to go to our appointment.

At the appointment, Dr. Roberson looked at his ear drum and said it looked really good.  (Dr. Putnam had also said it looked great.)

He explained that he won't go through the actual ear drum for the surgery but along the side of the ear canal.  He also repeated the prognosis - pretty good.  He wouldn't know until he goes in there exactly what he would do - probably putting a titanium prosthetic onto the Stapes so that it touches the Incus.

After the doctor visit, we went to Create It Ceramics and Glass Studio at the Town and Country Mall in Palo Alto and made a shiny black spider with white dots and beady red eyes.  That place is like Color Me Mine but even better!  Lots of fun!

Two Months Post Microtia Repair!

September 18, 2011.  Today's the 2 month mark from when Ben had his microtia surgery.  Since the past post when Ben's brother repeatedly re-injured Ben's new ear, Dr. Lewin put his ear on lockdown under an ear cup for the following week.  After checking it last week, Dr. Lewin gave him the go ahead for any activities that he wants.  Soccer?  Sure!  Swimming?  Sure!  Ben had his first foray back into the soccer world yesterday and was a champ - he loves soccer.

His hearing on right side reverted to sub-par levels, so we talked with Dr. Roberson this past Wednesday.  He said that there could be problems with the ear drum, the stapes or both.  We'll go see him in person at the end of the month for an in-person assessment.

We've also scheduled an appointment for the surgical repair - he said there's a 50% chance that the surgery will result in restoring Ben's hearing to normal levels whereby he would not have to wear a hearing device.

Above is a photo of Ben today.  He was in the middle of eating, so that's mid-bite.  There are still a few tiny bumps in his ear, but his ear is looking really good overall.

Eight and a Half Weeks Post Microtia Repair

We visited Dr. Lewin, and she said that the ear was healing pretty well.  We removed the ear cup, and Ben resumed his regular activities - including his AYSO soccer.

By now we were also thinking about making sure that we scheduled Ben's atresia repair revision (his hearing had improved after the surgery in March, but then was back to its previous level after a while).  We wanted to schedule the surgery in 2011 if possible because we had already gone through the entire deductible as well as the maximum amount that a family pays in one year - so if we waited until next year - we'd have to pay the deductible all over again.  (See notes later on how this became a very fortuitous decision, as we later received a letter from Dr. Roberson's office that he was going to no longer be in network starting 2012, and also my own insurance policy raised its deductible and maximum amount that a family pays considerably for 2012...)

Anyway, we scheduled for Thursday, November 17.  In order to really know what we were doing during the revision, we talked by phone with Dr. Roberson.  He indicated that the hearing loss could be due to two things: (1) a "lateralized" ear drum and/or (2) conductive hearing loss due to the connection between the three tiny bones or ossicles (Malleus, Incus and Stapes) in his middle ear not having the connection they need in order to conduct sound.  According to the surgical notes from March surgery, there was a "fibrous" connection between the Incus and Stapes - so that, at a minimum was a problem.  In order to know whether the ear drum were also a problem, he'd have to see Ben.

Seven and a Half Weeks Post MIcrotia Repair

Ben's ear was healing really nicely, so with permission from Dr. Lewin, he started to enjoy the few remaining days of summer.  School was starting on September 7, and unfortunately, I had to be out of town on the first day of school!

September 6, 2011.  After the Labor Day weekend which included Ben's brother kicking him in the ear and knicking his ear, we paid a quick visit to Dr. Lewin who confirmed that we are doing the right thing with the Bacitracin and yellow tape, and that we're basically back to square one on that spot for Ben and need to wait for it to heal...

September 7, 2011.  Another bump on the road to recovery...While traveling, I received a text from my husband that Ben's younger brother (yes, the same one who kicked him in the ear a couple of days before) had wrestled him to the ground in the playground right before school, and Ben landed on his ear in exactly the same spot busting open the wound.  (Groan!)  Here is a picture (left) of what it looked like after the tumble in the play yard.  Thankfully, we now carry Bacitracin and yellow tape with us...

By the next day, the ear had healed a little and looked like this (right).

Ben returned to Dr. Lewin that day, and she re-bandaged his ear and said that it had to be kept under the plastic ear cup until it was completely healed.  We did not put any ointments on the ear, just let it heal under the ear cup.

Seven Weeks Post Microtia Repair

Ben after his brother kicked him in the ear

September 5, 2011.  Two steps forward, one step back.  Ben returned from a wonderful slumber Labor Day weekend nonchalantly mentioning that his brother had kicked him in the ear with his shoe - so in the same weak spot as before - his ear got banged up.  Back to the Bacitracin and yellow Xoroform tape.  (I went ahead and bought a jumbo pack of it online.)  The other parts of his ear are healing nicely, though...Tomorrow we'll be seven weeks out.

Six Weeks Post Microtia Repair



September 1, 2011.  As Francesca promised, Ben's ear continues to gain definition.  You can see the "Y" there.  Ben took a bath tonight, and I mistook his new ear with his "old" ear.  Not the greatest photo of Ben, but here's how his ear is looking.  We are going to the audiologist and Dr. Lewin tomorrow.  He's had a cold, and I think it's affecting his hearing in both of his ears.

September 2, 2011.  Since Ben was saying, "What?" quite a bit, we took him in for an audiological test with Dr. Sol and Dr. Avila (his new associate) who confirmed that he has a little "pressure" / fluid in his left ear and bone conduction loss in his right ear.  They set us up with a visit with Dr. Michelle Putnam (an ENT) with Westside Head and Neck for later in the day.

We had set up a visit with Dr. Lewin next.  Dr. Lewin who said that the ear is healing well, that we should continue with Clobetasol on the front for just a little longer but stop the Bacitracin, that Ben can do anything that the ENT OKs, that the ear will continue to heal and stabilize over the next few months and that we'll see Dr. Lewin next in December!

When we visited Dr. Putnam, she confirmed that the left ear had some pressure and that there is bone conduction hearing loss in the right ear (most likely the 3 bones in the middle ear have re-fused together and are not conducting sound) and that the ear drum looks good/intact.  She prescribed Afrin, Ocean's nasal saline solution and Nasonex (prescription) for Ben to take to try to clear up the liquid.  Also, she said he's cleared to swim but that he should dry out his ear after swimming.



Dr. Putnam and Ben



Five Weeks Post Microtia Repair

August 21, 2011.    Yes - that's his new ear!  It's been one month and three days since Ben's surgery.  Ben's ear is really coming around.  When Ben saw this picture of his ear (above), he insisted it was his old big ear.  There is still some raw-ness in the same spot and along where the sutures were along the rim of the ear, but the ear is looking less and less swollen.  For the past week and a half, since Dr. Lewin told us she was concerned about the healing in that one spot, we've been putting Bacitracin Zinc ointment on the raw spot, Clobetasol on the front surface of the ear and Neosporin gel on the part of the ear right at the entrance to the canal where there had been some cyst-like bumps.  The cysts at the front of the canal that I was worried about seemed to have resolved themselves and gone away.

I created my own way of wrapping his ear so that it's protected and is kept moist with the ointments, but he doesn't have to wear the cup.  So most of the time, Ben's ear is enjoying healing time under wraps.  He's not a big fan of wearing the cup, but he's fine wearing the bandage.

August 26, 2011.  It's been five weeks and four days, and Ben's ear has healed an incredible amount in a short period of time.  Here (to the left) is a photo from today after I cleaned his new ear.  As you can see, the swelling has decreased a lot.  It still has a ways to go.  The skin is still raw and a little pink.  Dr. Lewin says that it'll take a few more months for complete recovery.  Francesca said that it will get a bit more definition, which you can start to see already.  I'm also including (to the right) a photo of his "old ear" - his left side non-microtic ear so that you can see the comparison.

Here are also some pictures from the past few days.  When we went to visit Francesca on Wednesday, Francesca said that the cool thing is that while the ear first had only that one blood vessel providing the blood, by now vessels from other sides of the ear have grown into the membrane and so the ear is being provided with blood from all directions.  She said that the original vessel feeding the ear could be cut, and Ben's ear would be just fine.  Amazing!

Four Weeks Post Microtia Repair

August 10, 2011 - before bed time.  By week 3, Ben's ear was healing nicely.  So after our August 10 visit to Dr. Lewin, as per her advice, I gave my first crack at cleaning Ben's ear with hydrogen peroxide.  Bad idea.  Immediately, the hydrogen peroxide made some of the skin on the ear turn white, and there was a slightly "raw" spot that became an open wound by the morning.  I sent Ben to summer camp with no cup or bandages on his ear because I had thought it was OK to do so.

August 11, 2011.  I sent the photo to the right to Dr. Lewin because I was concerned about the open sore.  She called me back and said to keep the spot  moist with vaseline and to not worry about it.  That was on a Thursday or Friday.

 

August 15, 2011.  By Monday, the ear looked a bit better (see photos above from Dr. Lewin's office), but I was going to travel for the week, so I brought Ben into the office.  I actually thought the ear looked pretty healed up by the time of the appointment, but Dr. Lewin saw it and was quite concerned about how raw the skin looked in that one spot. 

Dr. Lewin put us on a new regiment using the special yellow tape + the Bacitracin Zinc ointment.  (They say it's basically the same thing as Neosporin.) 

August 18, 2011.  Exactly one month post surgery.  As per Dr. Lewin's advice from our previous visit (see below), we had been checking and re-applying Bacitracin Zinc ointment to his ear twice a day for the past few days, and the open sore on his ear seemed to make good progress healing.  By the time I returned from my work travel, it had improved further (left and below).

Three Weeks Post Microtia Repair

<August 10, 2011.  Ben's ear is looking less and less swollen, it's coming closer to his head, and almost all of the sutures in the front are gone.  There are some small signs of irritation (tiny bumps/cysts) in the canal; Dr. Lewin and Francesca say Ben probably had a reaction to the sutures there and that it will go away.  (You can see the tiny bumps in the second photo below.)  Dr. Lewin was really busy during this appointment with tons of patients in her office.  Another nurse (Cheryl?) washed Ben's hair and prepped him, and then he had his photo taken by Francesca.

We're told that he looks great and that we can start washing his ear on our own.  Also, we're told that with the split graft (which Ben had), they recommend putting a dollop of Clobetasol on the front (split graft) side of the ear.  In addition, Dr. Lewin recommends that I put Neosporin in the entrance of the canal where there are a few bumps/cysts.

Ben in the photo booth.  Francesca behind the lens.  This is his new ear at three weeks.  Yes, that is his new ear.

Two Weeks Post Microtia Repair

August 3, 2011.  Same wonderful, exclusive Dr. Lewin / Francesca Jahns spa.  (Photo of spa treatment to the right.)  Ben's ear is looking a lot better quickly.  Francesca puts a cotton with vaseline on it in his ear to prevent water from getting into his ear during the shampooing.

There is still dried blood, rawness, stitches and quite a bit of swelling.

I love this picture of Francesca painstakingly cleaning his ear.  It's apparently important to keep the ear cleaned and work the stitches and grime out to help the ear heal and look good.

One Week Post Microtia Repair

A day or two after the surgery, Ben's right eye was very swollen - so we went into Dr. Lewin's office - and they said that was typical and that the swelling would get a little worse first and then better.  Indeed, within a few days the swelling in his eye was gone.

In addition, at first, it was very difficult for Ben to sit up and go to the bathroom because his abdomen hurts from the skin graft taken from that area.  After just a few days, he's able to walk upright and within two weeks, he can wear normal pants (and it doesn't hurt his scar on his abdomen.

July 27, 2011.  It was amazing seeing Ben's ear (above) for the first time.  Dr. Lewin's office and lovely Francesca Jahns provides a wonderful shampooing (regular baby wash) to help wash the hair where there is still a lot of healing going on.  The shampooing also reduces the itchiness from the graft site healing.  They also clean (with regular liquid soap) and re-dress the ear.  Dr. Lewin and Francesca provide the much needed "touch."  Not much you have to worry about!

Above is a picture of Francesca cleaning off some of the dead skin on his new ear.  It has stitches and is somewhat swollen but looks pretty amazing for one week out. 

Also, due to the swelling the ear sticks out.  Dr. Lewin says that it is impossible to make the ear stick out too much because it always becomes closer toward the head when the swelling goes down.  Just to set expectations, she says that the ear won't be healed until about four months.  Ben won't be able to get his ear wet at all (sponge baths) for one month.  He won't be able to swim for two months.

They put a certain ointment/substance on his ear to prevent fungal growth in this early summer weather (see above).

During this visit, Dr. Lewin says that she sees a first...I cut Ben's long hair while we're there and before they put the bandages back on his ear.  That way, his hair won't be in the way when they try to put on and remove the sticky bandages.  Then, Dr. Lewin re-dresses his ear and puts back on his ear cup and red cap (and shares a red vine with Ben).

Microtia Repair - July 18, 2011

Ever since the canalplasty, we had scheduled the microtia repair with Dr. Lewin to be in early summer so that Ben would have as much time as possible during the summer to heal.  School ended at the end of June, and then I took the kids to NYC to see the Statue of Liberty, Lion King and meet up with lots of great friends.

July 18, 2011.  We arrived at 6:30 AM at 310 N. San Vincente Blvd, the Cedars Sinai Surgery Center which is in the Outpatient Services Building north of the Cedar Sinai hospital high rises.  There is plenty of parking in a big parking lot in front of the building.

We waited for what seemed like a long time, especially since Ben hadn't eaten or drunk anything since the night before.  When we went upstairs and then to the pre-surgery room.  Dr. Lewin greeted us in her scrubs, and introduced us to the anesthesiologist, Dr. Karen Butterworth (see photo below with Dr. Lewin).  When we were showing this picture of Dr. Lewin and Dr. Butterworth to our youngest son (four years old), he said, "Wait.  The doctors are girls?"  Clearly, we need to work harder on breaking down their mental barriers on gender-appropriate professions... There were also several great nurses as well as the assisting male nurse who was terrific and called us frequently during the surgery which lasted until around 5:30 PM! 

As was the case with the canalplasty, at least one of us had to be on the premises the whole time.  I took a trip home during the surgery.  When we finally got to see Ben, we were so relieved.  He did really well, and though his ear was completely covered up and would remain that way for a week, Dr. Lewin showed us pictures from the surgery that she had taken.  (She thinks of everything!)  He did not have to have tubes for drainage.

Our beautiful son was asleep for a while, and when he woke up, it was much less traumatic than it had been with the canalplasty.  He did immediately ask if we had gotten him the Kevin Levin Ben 10 action cruiser that he had requested and seemed pretty pleased with the Ben 10 Mack 10 car we got him instead.  I thought the stuffed bear that had a head bandage and was labeled "Ben" was a really nice touch.  We went home and had a welcoming home "party" with mac and cheese.

Doctor's Orders:

• No getting the inner ear wet
• If in pain, take prescription Codeine - but it tastes so bad the kids would rather be in pain
• Don't sleep on the Medpor side
• Use shirts that button in the front
• Keep the ear cup on for the first couple of weeks.  Thereafter, the ear cup is only needed at night.
• After the first couple of weeks, try to clean the ear and encourage the stitches and dried blood to go away

Removal of the Plug (April 25) and 1st Cleaning (May 13, 2011)

April 25, 2011.  In April, at the recommendation of the Calfornia Ear Institute, we saw a local ENT, Dr. Lei Zhuang, at Cedar Sinai for removal of the plug.  Dr. Zhuang is a beautiful doctor with a no-nonsense approach that did not jibe with Ben.  (We decided that we need to seek out a more kid-friendly ENT in the long term.)

We continued to put drops into Ben's ear.  Still not exposure to water: sponge baths only.

May 13, 2011.  Then in May, we returned to the California Ear Institute to see Dr. Geoffrey Service an ENT fellow with Dr. Roberson (I don't think that Dr. Roberson is in the office on Fridays) for removal of the last piece of packing and little clear plastic disc (looks like a tiny contact lens) that keeps the ear drum in place and a cleaning of the canal.  Dr. Service had these super precise and long angled tweezers for getting in there.  I believe that this was also when the clear disk was removed from his ear canal.  Although Ben was very sensitive about anyone touching his ear, Dr. Service was very good about connecting with Ben (he has sons the same age) and telling Ben what to expect and showing Ben the stuff he was removing from his ear.

In addition, we had another audiological exam - and the results were much closer to what we were experiencing with Ben.  The results indicated that the surgery had helped close about half of the gap of hearing loss that he had.

Water Filled Family Vacation

We had long-planned a family vacation at a big resort in Cabo where the main features are hanging out in various fun swimming pools and going to the beach.  Needless to say, Ben (and his brothers, too) were quite understanding of the need to not get his head wet.  Dr. Roberson would probably have a heart attack seeing these pictures, but we did stay true to our commitment to keep his head above water.

Trimming of the Plug - April 6, 2011

April 6, 2011.  A week after the surgery, we were thrilled to make it through the first gauntlet - keeping the plug in his ear canal.  I honestly don't know how we did it.  We told him no running around and jumping.  We returned to CEI to see Dr. Roberson so he could trim the plug and infuse it with more antibiotics.  Ben was sensitve around his ear and was not happy about having a stranger touch his ear.

It was also at this time that we did the second of three audiological tests at the CEI.  The results indicated that Ben's hearing was pretty much unchanged from prior to the surgery.  The results didn't make any sense, because we were certain that he could hear us from his new right ear.  Whereas before the surgery he could not hear at all from that side, after the surgery we could whisper on that side and have a conversation with Ben...

We were to continue putting Tobramycin drops in his ear canal twice a day.  His healing was going really well - no signs of infections or stenosis.

Great Things to Do In Palo Alto

In a very short period of time, Ben was running around like nobody's business.  Among other things, Ben visited the Totem Garden/sanctuary at Stanford University (I'm hoping that the spirits are glad that this little boy was having so much fun with them), played around the fantastic living sculpture/tunnel cave/structure in front of the Palo Alto Library and went to the Palo Alto Junior Museum and Zoo.  Also, Create It Ceramics and Glass Studio in the Town & Country Mall in Palo Alto is awesome.  The Gamble Garden is a nice place for a walk in beautiful grounds.

In San Francisco (where we are originally from) we checked out the relatively new California Academy of Sciences Steinhart Aquarium.  It has an environmental theme, and there is a multi-story butterfly sanctuary that is really cool and where butterflies literally land on you.  Other really fun things to do are: the Bay Area Discovery Museum (which is right across the Golden Gate Bridge), the Exploratorium in the Palace of Fine Arts (located in San Francisco's Marina district), Alta Plaza Park in San Francisco's Pacific Heights is one of our favorite parks, has a great kid's playground and great views of the City, and the Farmer's Market at the San Francisco's Ferry Building.

Days Immediately Following Canalplasty with Dr. Roberson

The most amazing thing was that Ben appeared to hear us from the start from his right ear.  While lying on a pillow on his left ("big") ear, we could whisper into his new canal and he could hear what we were saying.

There was an antibiotic-infused plug (looked like a regular foam ear plug from Walgreens but ~$20,000) put in Ben's new ear canal.  The key was making sure that the ear plug stayed moistened by Tobramycin drops twice a day and that the plug didn't come out.  So no running, jumping, fighting, wrestling... all of those things 5 year old boys love to do!

Also, part of the skin on his head was used to line the new canal.  That area from which they grafted is the part that would give him the most discomfort, they said.  They also said that the actual ear canal would not hurt because there aren't nerves there!

After the surgery, Ben got a brightly-colored purple head bandage which he definitely did not like when he came out of the anesthesia fog.  They indicated that kids frequently come "out of it" in a very bad mood -and we definitely experienced that.  Ben was thrashing around not liking the IV in his hand nor the wrap on his head.  (Not surprising, huh?)

We stayed in Palo Alto for a few days so that Ben could "chill out" san temptations of rowdy brothers.  In the days immediately following the surgery, we tried to rest a bit (wake up late, take mid-day naps) and have one fun outing.  We colored, cooked and played with some new toys.  Ben was a little embarrassed about his head wrap...

To the left is a photo of Ben the afternoon after the surgery.

April 1, 2011.  A day after the surgery, Dr. Jennifer Grady, an ENT fellow with Dr. Roberson, removed the head bandages.  Ben liked that a lot.  Cheryl Medina, Dr. Roberson's Surgery Coordinator, is standing to the left.  There was a scabby and shaved square on his scalp whence the graft had come.  Ben was really careful of his head and seemed unfazed by the recent surgery.

Canalplasty with Dr. Joseph Roberson - March 31, 2011

March 31, 2011.  We went to Dr. Joseph Roberson (pronounced like "Robertson" but without the "t") two times (3/7/11 and 3/28/11) for long-awaited canalplasty appointments only to find out that Ben had slight temperatures and that they preferred to postpone surgery.  Ben had been acting completely normal (active as usual) so we were not aware that he had a temperature.  (I think the temperature was around 100 degrees.)  Back in the truck!  Ben practically memorized the Star Wars series.

When we went to Dr. Roberson's office the third time (March 31, 2011), and he had a temperature again, we decided to go ahead with the canalplasty.

We arrived at the Waverly Surgery Center in downtown Palo Alto.  There is good free parking under the building.  It was definitely one of the most heart breaking experiences seeing the OR doors close behind your little kid on the gurney.  Thinking about what he's about to go through is quite emotional.  Because Ben is a minor, either parent had to be in the building throughout the surgery, which lasted from about 7:30 AM - 11:00 AM.  The doctors called us or came to give us an update at least twice during the surgery, which was very reassuring.

After the surgery, when Ben was still in the OR but the surgery was over, Dr. Roberson came out and told us that everything went well and that Ben's anatomy was good because they were able to make a nice big canal.  He said that there was little to no risk of stenosis (narrowing/closing of the canal).  Some people who are familiar with this surgery will ask, when Ben got his cat scan, what was his rating.  He was an 8 out of 10.

One thing was because he had a cold and his ear anatomy was swollen, it sounded like they did not do everything that they might have to his three little bones.  Therefore, they said that they might have to do a revision on them.

Can't express how relieved we were to have that part of the experience "over."  We were so concerned about the canalplasty because of the risks of surgery in general and because of its proximity to the facial nerve and because of the risk of affecting the cochlea.

Long term effects of multiple surgeries and exposure to anesthesia.  One of the reasons why we did not want to jump into doing the surgery was because of our concern about multiple exposures to anesthesia and the potential effects on mental development.  After asking nearly every doctor and surgeon we encounter about the long term adverse effects of surgery on a child, it sounds like nearly everyone agrees that it's not ideal (due to the anesthesia) and that's part of the decision you need to weigh.  This article summarizing a Mayo Clinic study suggests that more than one surgery with general anesthesia more than doubles the changes that a child will develop learning disabilities.  This is another article on the topic suggests that the anesthetic, ketamine, in particular may be associated with a higher risk of having future learning disabilities.  One doctor said: "It's not until you get to around 4 surgeries that there seems to be an effect..."  I was thinking that we'd probably have around 4 (with the potential revisions, etc.) so this was not very reassuring!

Above is a pic of Ben in the surgery center while still asleep from the anesthesia.  One other note is that they said it was fairly common for children to have a "bad" experience while coming out of the anesthesia.  We definitely experienced that.  Ben is strong willed to begin with, but when he came out of the fog of the anesthesia with the residual drugs in his body, the IV in his hand and the huge bandage on his head, he was a bit out of sorts.

Doctor's orders:

• No jumping, running, wrestling, etc.
• No holding in sneezes (puts pressure on the ear drum) - just let it go
• No blowing nose - just wipe runny nose
• No swimming, bathing under water, getting ear or head wet
• No drinking from a sippy cup or drinking from a straw
• No sleeping on the operated side
• No aspirin or Motrin (Tylenol only)
• Flying in an airplane was OK after 2 weeks!

Phone Consultation with Dr. Roberson

January 4, 2011.  By the beginning of the year, my husband was still very skeptical/reluctant/annoyed-at-me-for-wanting-to-talk-about-it about doing any surgery.  I felt like I was twisting his arm.  He indicated that he needed to learn more and get comfortable with the idea - so he scheduled a phone consultation with Dr. Roberson on January 4.  We talked to several other families across the country that went through with both surgeries to hear about their experiences.  Those conversations were very good, because we heard about the realities and challenges of going through with the surgeries.  They were not sugar-coated conversations.

Devin.  Also, through Dr. Lewin, we got hooked up with another LA family whose son, Devin, had bilateral microtia and was close to Ben's age and who had completed canalplasty and microtia repair on both ears with Drs. Roberson and Lewin.  We had a play date with Devin in February 2011 that was really fun - especially since Ben didn't know that Devin had microtia when he had already started to jump around and play with him - and then at some point - Ben whispered to me: "Don't tell him I have a little ear."  To which I said, "OK.  But do you know that Devin had TWO little ears?"  Then, Ben lit up and said, "REALLY?"  And then Devin showed Ben his ears.  And there was an instant bond!

Anguished Decisions

Anguished Discussions Over the Following Months (May 2010 - Dec 2010).  This all seems like a blur to me now.  I thought that if we were planning on doing the surgery, we should get our heads around it sooner rather than later because it's nice if you do it while the kid is young and having microtia doesn't become a defining part of his or her personality.  That's just my perspective; there are lots of other opinions, too.

I definitely heard a lot, such as: (1) wait until the technology and techniques have improved, (2) wait until Medpor is more proven, (3) don't do anything, it's all too risky and not worth the potential upside given that his hearing is OK in his left ear and his face is so cute and his little ear is cute also.  We had lots of family and friends who hooked us up with their ENT friends.  Honestly, most ENTs - even world-renown ones - don't know that much about microtia aural atresia unless they specialize in that area.  Therefore, unsolicited advice and "Did you call uncle so-and-so?"s were usually well intended attempts at helping me that were actually time consuming and not very helpful.

In the end, I ended up scheduling the appointments for surgeries so that we had those options, but my husband and his family were fairly opposed to doing the surgeries.  I, too, was really concerned - as there are significant risks.  Even up to the night before the canalplasty surgery, we were in tears thinking about subjecting our child to those risks.  It is not an easy decision.

Scheduling the Atresia Repair with Dr. Roberson

Scheduling the Canalplasty.  Starting in May 2010, I emailed Cheryl Medina (Dr. Roberson's Surgery Coordinator) our preferences for 2011 canalplasty.  Our first choice was in April around Spring Break, second was in January around Winter Break and third was at the beginning of the summer.  She said that we were #8 on the waiting list for 2011.  As time got closer, and through ongoing conversations with Cheryl Medina, we finally settled on a Canalplasty date of March 7, 2011, right after Ben's brother's birthday and a little bit before Spring Break so that he would have some time to recover in time for and during Spring Break.  Also, he'd have about three months to recover before surgery at the beginning of the summer.  In the end, as you'll see, we didn't end up doing surgery on March 7 - but fortunately, we live in LA, and that was OK!

CAT Scan with California Ear Institute - Dr. Roberson

California Ear Institute and Dr. Joseph Roberson.  May 26, 2010.  At this point, Ben was four years and seven months old.  I had decided to give up on the possibility of my insurance ever covering a low dose CAT scan, so I had called Dr. Roberson's office, and they happened to have a cancellation, so I quickly planned to cancel all of my appointments and drive with Ben to San Francisco the following day.  We got a 3:30PM appointment, so we could leave first thing in the morning and get there with plenty of time.

This was the first time that I had met/seen Dr. Roberson since Ben was an infant, and re-meeting Dr. Roberson - he was very nice and reassuring.  He came into a room and reviewed the results with us while my husband was on speaker phone (by cell phone - Dr. Roberson's patient rooms do not have any wired phones).  He indicated that Ben was rated an "8 out of 10" with 10 being the best.  He said that 8-10 ratings are good candidates for canalplasty.

It nice to hear that we had the option to do canalplasty if we chose to do so.  A lot of things to think about...The CAT scan was about $1,000.  I explained to Dr. Roberson that I was paying out of pocket, and he very kindly gave me a discount.  Yet another example of how these doctors don't do this for the money - they seem to really care about their patients.  It was a really kind gesture that I appreciated greatly.

Insurance Companies and Coverage for Low Dosage CAT Scans

September 3, 2008 - May 28, 2011.  It's hard to believe it now, but as I look back at emails from the period, I spent one year and seven months trying to get my insurance to cover the cost of a low dosage CAT scan.  After our September 3, 2008 visit with Dr. Lewin in which she indicated that Ben would need a CAT scan to see whether he as a candidate for canalplasty, I started to do a little research.

As mentioned in the "Associated Topics" blog, I had been asked by so many specialists over the years to get a CAT scan of Ben - and I'm so glad that I followed the advice of my pediatrican who said, "Don't do it yet!"  The amount of radiation that a child is exposed to from a CAT scan is thousands of times more than an x-ray and it is at levels intended for an adult.  In addition, the reason why radiation is considered dangerous and a potential carcinogen is because of the possiblity that radiation can cause cell mutations.  If the cell mutation happens in a 60 year old, there is much less time (between 60 and the end of the 60 year old's life) for the cells to become cancerous.  In a child, there is an entire lifetime during which the cells can grow and become cancerous.  Furthermore, a child goes through much more dramatic growth than an adult.  Therefore, there are lots of reasons why it's a good idea to be circumspect about the amount of radiation to expose your child to.  Yet most CAT scan machines are built with only adult proportions in mind.  Since the machines are incredibly expensive and need to pay for themselves and then generate revenue for the hospitals, it's not "worth it" for hospitals to invest in additional low-dosage machines.  For microtic children, knowing that surgery was not an option until, at the earliest, three years old, why expose a baby or toddler to the radiation?

When I called the California Ear Institute (CEI) to inquire about the annual conference, Sheri Bryne (who is a wonderful resource for microtia but who no longer works at the CEI :(  infomred me that Dr. Joseph Roberson's office had a special low dose radiation CAT scan machine made by Xoran that generates more accurate CAT scans with 1/10 the level of radiation.  We proceeded to get a hand-written note from Dr. Lewin and my pediatrician, Dr. Keene to my insurance company, about the need for the low dosage CAT scan (of which there are none at all of the radiation labs in all of the hospitals associated with Cedars Sinai in Los Angeles)!  The claim was denied and the only CAT scans that they would refer Ben to were those at Cedar Sinai Hospital with "regular" CAT scan machines at regular adult levels of radiation.  I have copies of all of these notes and email exchanges between the different parties - it ain't pretty.  We sent articles, research, went through an appeals process - everything.  No dice!  After trying for over a year, I finally decided that time was ticking and I would pick up the tab myself.  Interestingly, Cedar Sinai is also one of the hospitals in the US that was caught over-radiating patients.  Here are two good articles on this topic, one overview and one more specific that includes reference to Cedar Sinai.

Anyway, even though insurance would not pay for it, after a year and a half +, I ended up just calling Dr. Roberson's office in Palo Alto.  They happened to have a cancellation the following day, and I cancelled my appointments the following day and high-tailed it to their Palo Alto offices for a Xoran CAT scan.

Initial Visit to Dr. Sheryl Lewin - September 3, 2008

September 3, 2008.  We first visited Dr. Lewing when Ben was shy of three years old.  Initially we went to see Dr. Lewin because (1) our pediatrican had referred us to her, (2) we knew she worked with "the best surgeon for Medpor," (3) I had heard from someone at LAUSD that her ears were actually very good, and (4) she was covered by my insurance.

After visiting with Dr. Lewin, we were definitely impressed by the number of microtia repairs she had done, and by how good they looked.  Check out this YouTube video of a number of before and after Dr. Lewin patients.  Also, Dr. Lewin is very personable and nice.  While both she and Dr. Reinisch clearly have a deep love of their patients, she has a more maternal and playful personality than Dr. Reinisch.  (Update as of August 2012: As of the beginning of 2012, Dr. Lewin is no longer practicing with Dr. Reinisch.  Click on this link to see her independent practice website.)  By this point, Ben was about three +, and that is around the age when the surgery can be considered.  By the time we met with Dr. Lewin, I think that both my husband and I thought that, if we were to do Medpor, she would be just as good to go with as Dr. Reinisch, her mentor.

Dr. Lewin said that if we were considering getting the atresia repair surgery or the combined microtia/aural atresia surgery, we needed to get a CAT scan of Ben's ear anatomy to see if canalplasty were an option.  A short summary of the timing and key differences for the two methods:

• Medpor approach:
• The Medpor approach uses a synthetic medpor frame to create the shape of the ear.  The main disadvantage is concern that if the ear is traumatized through an accident or sports and the ear is cut, the medpor could be exposed and necessitate surgery to repair.
• If the patient is going to have canalplasty, the canalplasty surgery happens first, then the medpor microtia repair follows.  Surgery can begin as young as three years of age.
• This method is much newer than the rib graft method, so there aren't examples of people who have had the medpor framework for 20+ years like there are for rib graft.  However, medpor has been used in bodies for a long time; and medpor seems to last.
• Dr. John Reinisch is the pioneer of the medpor method.
• Rib Graft approach:
• The rib graft approach has been used for a much longer period of time and has a long-term track record of success.  It uses the individual's own cartilage (from between the ribs) as the framework of the ear, so any injury to the ear would heal the way the body heals.
• If using the rib graft approach to microtia repair, the microtia repair happens first and then the canalplasty follows.  Because this method requires that the cartilage be large enough to be sculpted into an ear frame shape, the child must be at least eight years of age to start surgery.  Removing the cartilage essentially requires one more "step" than the medpor approach - but the benefit is the 100% organic origins of the framework.
• Having a skilled and experienced surgeon is critical for both approaches, but it's particularly important for the rib graft approach because the cartilage framework is carved by the surgeon during the surgery.
• Dr. Burt Brent is one of the best and leading pioneers of the rib graft method.

A Summary of All Experiences with Doctors, Specialists, Insurance and Unified School District Employees Leading Up to Microtia Repair

The following notes below include some information on the following topics:

• Let Them Hear Conference
• Visits With Various Doctors and What We Found
• Dr. Burt Brent
• Dr. John Reinisch and Dr. Sheryl Lewin
• Dr. Joseph Roberson
• House Ear Institute (LA)
• BAHA
• California Early Start Program

LET THEM HEAR CONFERENCE

I attended the "Let Them Hear Foundation" conference in Palo Alto in October 2006, and I met with some of the leading doctors in the overall field: Dr. John Reinisch, Dr. Joseph Roberson and Dr. Burt Brent.  The conference is incredibly helpful and worth going to, if not for any other reason, it's a great way to meet some of the leaders in the field without having to travel to their respective offices.

VISITS WITH VARIOUS SPECIALISTS AND WHAT WE FOUND

Over the past years, we have lived in both San Francisco and Los Angeles and made many visits between the two cities to visit doctors.  I haven't kept track of exactly how many, but we've probably seen between 10 - 25 of specialist reconstructive surgeons, ENTs, audiologists, etc. at Cedars Sinai (LA), University of California at San Francisco (UCSF), the California Ear Institute (Palo Alto), the House Ear Institute (LA) and others.  What we found was that, even at very elite hospitals, there aren't that many doctors and specialists who are very knowledgeable about microtia and atresia.  In fact, I felt like I was educating quite a few of them about microtia and atresia.  Despite their lack of expertise, not one said what they should have: "This is a highly specialized area, and you should really talk with doctors who have seen hundreds of cases.  There are only a few such doctors in the US."

Based on my admittedly narrow view, I would only entrust my kid's ear to a doctor who has performed hundreds of canalplasty or microtia repair surgeries.

For canalplasty, the leading doctor without a doubt is Dr. Joseph Roberson at the California Ear Institute in Palo Alto.  I've heard Dr. Brad Kesser at UVA School of Medicine as a specialist in atresia repair as well - though I do not know of anyone personally who used him for atresia repair.

For microtia repair, the leading doctor for the rib cartilage method is Dr. Burt Brent in Northern California near Palo Alto and San Francisco.  Dr. Arturo Bonilla in San Antonio seems to make good looking rib graft ears as well.  For the medpor method, Dr. John Reinisch, Dr. Sheryl Lewin (both in Los Angeles) and Dr. Thomas Romo in New York City seem to produce the best results.  Unfortunately, I've seen the results from other doctors' work, and they can really make the ear look much worse if they haven't had a lot of experience.  If the doctor cannot provide you with a lot of photos of patients who ended up with ears that you'd be happy with as a patient, you should probably not use that doctor.

For example, for several years, we had an annual multi-hour clinic visit to the Cranial Facial team at UCSF and they tracked Ben's progress over the years.  UCSF is a world-renown medical institution with really smart and talented doctors.  Initially, we learned a lot through the process.  They were selling us on having Ben's microtia repair done with their reconstructive surgeon, "Dr. H."  Dr. H. did great cleft palate repairs and general facial plastic surgery.  He indicated that he had done "about two dozen" microtia repairs (this was a number of years ago, so maybe the number is higher now), but he couldn't show me photos of microtia patients that looked great.  So, ultimately, I did not think the reconstructive surgeon was enough of a specialist on microtia.  Last year (2010) was our last annual visit there, and we have decided to stop that visit.

DR. BURT BRENT

I was particularly interested in Dr. Brent because I had studied his website, and the ears that he created are really beautiful.  As you probably know, Dr. Brent is the leading surgeon of the rib graft method of ear reconstruction / microtia repair.  He is an artist by training and treats each ear like a work of art.  Also, I thought it would be ideal to have an ear made 100% of Ben's own body.  When I met Dr. Brent at the Let Them Hear Conference, he was awesome and had a great, gentle manner.  He definitely instills a lot of trust.  I have just dug up my correspondence with Dr. Brent dated February 7, 2006 (when Ben was less than four months old!) sending him photos of Ben's ear.  This makes me remember how scared I was not knowing anything about microtia and just wanting to learn as much as possible.  In particular, I remember health insurance concerns - and not knowing what would be covered and what would not be covered being a looming concern.  At the time, and this still could be the case, Dr. Brent was not contracted with any insurance companies, and not understanding how the insurance process works, that worried me.

DR. JOHN REINISCH AND DR. SHERYL LEWIN

Our pediatrician, who is not familiar with microtia aural atresia, but is a wonderful pediatrician, referred us to speak to Dr. Lewin when Ben was three years old.  I actually knew very little of Dr. Lewin at the time, but I had previously met Dr. Reinisch at the Let Them Hear Conference and had not really been considering medpor surgery.  As mentioned previously, one wonderful thing about Dr. Lewin (and I hope this doesn't go away) is that our HMO (I think it was United Health Care) covered her, and she is part of a lot of networks.

After visiting with Dr. Lewin, we were definitely impressed by the number of microtia repairs she had done, and by how good they looked.  Check out this YouTube video of a number of before and after Dr. Lewin patients.  Also, Dr. Lewin is very personable and nice.  While both she and Dr. Reinisch clearly have a deep love of their patients, she has a more maternal and playful personality than Dr. Reinisch.  By this point, Ben was about three +, and that is around the age when the surgery can be considered.  Dr. Lewin said that if we were considering getting the surgery and the combined surgery, we needed to get a CAT scan of Ben's ear anatomy to see if canalplasty were an option.

Update as of August 2012: Dr. Lewin is no longer in practice with Dr. Reinisch.  See this link for her current practice website and results.


An Aside on Husbands and Family.  My husband was not sold on the concept of surgery at all.  In fact, I think it's safe to say that he was somewhat opposed to doing anything.  He thought Ben was doing really well and was rightly very concerned that that surgery carried such major risks.  He was especially concerned about the canalplasty because of the risk of damaging the facial nerve that controls movement in the face.  I had been researching these topics for years, and my husband was substantially less apprised of the details than I.  I felt (perhaps unjustifiably) that when I was trying to gather information, I was met with questioning from my husband and family.  Everyone clearly had the best interests of Ben in mind, getting my husband up-to-speed on the details, pros and cons, etc. - so that he was comfortable enough with any decision we made - was a challenge.  His in-going perspective was that probably no surgery was the best option, but if we were to consider surgery, it would be better to go with the rib graft method.  Therefore, we had years to consider that option.  My husband accompanied me to the visit with Dr. Lewin more out of respect for me and as part of the educational experience.

DR. JOSEPH ROBERSON AND THE CALIFORNIA EAR INSTITUTE

I met Dr. Roberson at the Let Them Hear Conference in 2006 and then again in 2010 when Ben had his CAT Scan.  I found him to be amazingly dedicated and passionate about his work.  In coordination with a number of partnering doctors, Dr. Roberson donates his time and resources to helping kids around the world with microtia.  Furthermore, considering that he does not need to be "in network" with so many insurance companies - his doing so is a generous and real benefit and service to his patients.

HOUSE EAR INSTITUTE

We had heard a lot about the institute, and we were referred there by our terrific pediatrician, Dr. David Keene, when we moved to Los Angeles.  We had also met a young guy working up at the Mountain High Ski Resort who had had canalpasty at the House Ear Institute, so we knew they were at least familiar with the condition.  Hoping to find a good local ENT, we went but were somewhat "turned away" by the doctor/surgeon.  He "scolded" us for seeing specialists, made us feel like we were being too curious for trying to find a regular ENT for Ben, and told us to chill out and wait a few years.  I suppressed the memory of his name or else I would include it.  I think that he was trying to be helpful...

BAHA (BONE ANCHORED HEARING AID)

Even though he did not seem to be an expert on aural atresia, the ENT surgeon at UCSF, Dr. Lawrence Lustig, was instrumental in helping us get a BAHA for Ben when he was about two years old and have it supported by health insurance.  So, as you can tell, every doctor is usually as helpful as they can be.  Dr. Lustig worked hard to write a specific note (based on a draft from Dr. Roberson) to the insurance companies attesting to the medical necessity of the BAHA, and though it took about 3 months to get approved by my insurance (part of Brown and Toland), we did finally get the $4,300+ BAHA covered.

Wileen Chang, the senior audiologist at UCSF, was by far the most helpful and knowledgeable - and she was critical to helping get the insurance coverage, talking with the insurance company and procuring the BAHA for us.  We also purchased the loss/damage insurance policy on the BAHA - which was absolutely critical.  When you first purchase the BAHA, I'd highly recommend getting the insurance that is offered from the Cochlear Company.  Then, after that one-year policy runs out, I'd recommend getting a new policy via another third party insurance company.  Ours is through a company called Ear Service Corporation (ESCO).  I can't remember how many BAHAs we've gone through...

CALIFORNIA EARLY START PROGRAM

One of the wonderful programs that we were introduced to in the hospital when Ben was born was the California Early Start Program which helps ensure that children born at risk of having developmental challenges get the support that they need to develop well.  The Early Start Program provided support such as speech and hearing specialists that came to our home on a regular basis during the first few years of Ben's life.  I think that they really helped him out a lot - and they also urged us to get a BAHA for Ben.

Ben started interacting with deaf and hard-of-hearing teachers in San Francisco when he was three months old.  I fondly recall Katie Setser (beautiful Katie was probably Ben's first love!) and Mindy Zlotnick, both hearing impaired educators with the San Francisco Unified School District (SFUSD) as being very helpful and wonderful.  Mindy shared a lot of research with us, and helped us to connect up with another local family with microtia who had gone through bilateral microtia repair with Dr. Reinisch.  Mindy, as well as our really wonderful pediatrician in San Francisco, Dr. Eileen Aicardi, also helped us to set up recurring insurance-covered audiological visits to the San Francisco Center for Speech and Hearing (later renamed to the Hearing and Speech Center of Northern California).  Ben's various audiological tests were always a bit challenging, as sometimes he'd cooperate and sometimes he would not.  As he got to around 1 1/2 years, we never knew if he was not hearing or just ignoring the audiologist.  Before moving permanently from San Francisco to Los Angeles, a SFUSD gentleman named Joe Canon replaced Mindy and became Ben's primary speech therapist, and Ben really liked Joe as well.

When we moved to Los Angeles, I was saddened that the terrific support that we had received in San Francisco (primarily through the school district) would end.  Initially, the experience in LA at the pre-preschool level was great.  A woman named Kristine Henderson with the Los Angeles Unified School District (LAUSD) team was so wonderful.  She played great games with him that helped him want to learn to talk.  Other than Kristine, we interacted with some LAUSD deaf and hard-of-hearing specialists who were quite sub par and who treated me like a second-class citizen.  We had a bad experience when Ben went in for a LAUSD evaluation with a bunch of bully-ish school so-called "experts" who were quite rude and dismissive of anything I said and who clearly had met prior to the meeting with me and they had all agreed on what they were going to say.  The worst by far was Macia Makarenco, a school psychologist who was very condescending to me - and her side kick was Tova Goldberg, the speech pathologist.  Unfortunately, Kristine wasn't able to make the meeting.  Recalling that meeting makes me wonder about the tenure system for public school employees...

It was sad when Ben "graduated" to the next level up (probably when he turned three) and cheerful Kristine was no longer Ben's DHH teacher.  Then the case was taken over by someone who I'll call "AMcB."  "AMcB" just lacked the understanding and, quite honestly, "kindness" that nearly everyone else we'd interacted with had.  Fortunately, a wonderful woman named Abby McBride, who is partly deaf / hard of hearing herself, was also part of the new team.

I also attended at least a couple of group meetings organized by LAUSD for early childhood-age children with hearing impairment.  The meetings were of varying value - but I always learned something.  At one meeting, the LAUSD teacher was making reference to the surgical options for microtia repair, and she mentioned Dr. John Reinisch and Dr. Sheryl Lewin, his more junior partner.  That was the first time I had heard of Dr. Sheryl Lewin.  I asked if Dr. Lewin's ears were as good as Dr. Reinisch's.  She whispered to me that they both did great medpor ears, but that she thought Dr. Lewin's were tops.  Another positive experience through LAUSD was that we got a very accurate audiological reading from their experienced audiologist, Stephanie Pogorelsky.  All of these services were free, supported by the state, so my eyes were opened to some of the really terrific services available to people who work hard to pursue them.