Monday, April 29, 2013

Dance Finale

When Lily started dancing many years ago as an almost 3 year old, I took on my first "mommy title"...that of Ballet Mom. Since then I have assumed many different titles as our first born loves to try any and every activity.

"Ballet Mom" has always been the longest reigning one though and it has been special.  Lily loves to perform and her smile lights up the stage. She is such a joy to watch...even back at this very first performance.

Soon enough Lily had a little sister who also took the stage. While Lily's first recital was memorable because she actually knew the steps, Jade's was memorable for a different reason.

We are not sure if she knew the steps or not, because she stood in one place the whole time...hands covering her ears and shouting, "It is TOO LOUD. It is TOO LOUD!"  We could actually read her lips from the balcony.  It was hilarious! I never uploaded that video and now I am not even sure where it is, but oh my goodness, I am so glad it is forever ingrained in my memory. Here is a shot of Sailor Jade (almost 3 yrs old)!

Jade's love affair with dance wasn't quite as strong as Lily's. Lily started this year of ballet with the goal of being on point in a few years. But as the year went on her interested waned. We have been encouraging her to really decide what she wanted to do activity wise and she knew something had to go.  What would it be though? We had already given up piano, so would it be soccer, choir, softball, basketball or ballet?

At the same time Jade's interest was waning too.  So we are glad it ended up being an easy decision!

Last night was their final dance recital. It was Lily's 7th performance and Jade's 4th and they danced their hearts out!

Its been fun. Lots of great memories!

{I am so behind on acoustic neuroma posts...soon though, soon!)

Friday, April 19, 2013

Acoustic Neuroma - 9 Weeks Post Op (including craniotomy scar pics)

Yesterday marked nine weeks since my acoustic neuroma surgery. Jerry had a particularly humbling and encouraging conversation with a neurosurgeon at our church Wednesday that I wanted to share. I am taking a break from the recap posts as number 5 wasn't very fun to write. I sort of got stuck at "we found two abnormalities on your brain". Still gives me the shivers.

So, on to happy news! I am not sure how I missed running into Dr. Moody at our church's midweek dinner the other night. I must have been chasing kids or maybe I had already left to meet up with my small group girls for the evening. So Jerry had to fill me in when I got home later.

Dr. Moody is a long time neurosurgeon in the community and had come up to introduce himself to me after worship service the first Sunday in February. That was an interesting morning, as Jerry was being ushered into a new role in our church and being prayed for, but they also had me come forward as Jerry shared a bit about what was going on with my health. I was thankful for the prayers but also didn't like taking away from Jerry's moment of introduction either.

One of the positives of making my struggle public though was getting to meet Dr. Moody. Our church is just big enough that we hadn't crossed paths before. He asked me some of the specifics of the tumor and I could tell he was not thrilled that it was 3cm in size. He also asked if I knew about "the facial nerve". Jerry was talking to some other people, but standing near enough to hear Dr. Moody's question.  He later told me that he was hoping I wasn't in a puddle of tears over it. Somehow I wasn't, but I assured Dr. Moody that, yes, I was definitely aware of the possible damage to my facial nerve. Ugh. I hated it. Somehow being reminded of that risk again from a neurosurgeon in an non-medical setting was very sobering. At that point I hadn't yet become totally at peace with the probable complications. It wasn't my own vanity I was worried about. I kept thinking of my girls. Our oldest especially, who is at the age where the word "embarrassing" seems to be coming up a bit more often. The thought of being embarrassing to her pained me when it came to mind.

Okay...there really is happy news. So back to Wednesday night. Dr. Moody approached Jerry and asked how I was doing. Jerry told him how well things were going and how thankful we were for that. Dr. Moody told him that he had talked to Dr. Mickey (the neurosurgeon who removed my tumor) and they had recounted how amazingly well the surgery had gone.  That it was "easy" in fact.

Screech. Halt. Wait a minute!

That is when I wish I had been there as this conversation was taking place. My immediate question, how do they know one another? Where did they run into each other? The Tom Thumb produce section? Neurosurgeons anonymous? How did they get talking about my case?

That is where men and women could not be more different. Jerry looked puzzled at my questions. Not one of them had crossed his mind, that is for sure! ;)

Bottom line was that these two men --- top of their field, cream of the crop type guys --- who also happen to be neurosurgeons, were discussing how easily my tumor was removed. Apparently Dr. Mickey couldn't believe how it just "peeled right off". Acoustic neuromas are usually very stuck to everything and it is in the process of getting them "unstuck" that the nerve damage occurs. Dr. Moody commented to Jerry that especially with the size of mine (very large according to him) it was really miraculous how it came out without damage to the facial nerve. He said that even small ones are usually very hard to remove.

I could listen to these types of conversations endlessly. Especially as I get farther and farther away from those initial post op moments of feeling the Lord's hand continually upon me---upon me in ways that it is hard to wrap words around. It is just so good to be reminded of His care and kindness towards me. It also is good to remember there were very real and serious risks...and that the Lord answered our prayers delivering me from them. Coming out virtually unscathed was no accident!

Dr. Moody also told Dr. Mickey of the many, many...countless actually...prayers that were going heavenward on behalf of me and my medical team that day. I wonder what Dr. Mickey's response was to that. Also not inquired of by my sweet hubby.  Ah...can't wait to run into Dr. Moody!

So, what is life like 9 weeks later?

No facial weakness or paralysis..not now, not ever.  Not even temporarily after surgery. No doubt amazing. So thankful!

No dizziness or vertigo issues.

Really other than the healing scars, dry eye and being deaf on my left side--I don't even feel like I had surgery 9 weeks ago.

My abdominal scar (where they removed fat to pack in the tumor site) is completely healed, though it was more tender than the craniotomy site for sure. Here is a progression of pics showing the healing of the craniotomy site.

Pic 1: 5 days post op-still in hospital.  Can you say edema?!?
When Jerry got to the hospital that morning he said, 
"Honey, you might not want to look in the mirror today!"
It was too late. I wish we had gotten a pic from the front.

When Dr. Kutz (neurotologist-the doc who did the craniotomy to provide access for Dr. Mickey to remove tumor) got there that morning he said, "You have a bit of the 'shrek effect' going on."
Somehow we all laughed! I think secretly he was just glad my stitches hadn't busted open.

Pic 2: 12 days post op-right before stitches were removed.

Pic 3: 6 weeks post op - you can see hair growing back.

Pic 4: 9 weeks post op - you can see my sunburned ear! ;)
Oh the tan lines of a soccer mom.

I think everyone (including me!) is surprised about how little hair they shaved. I was pretty much a basket case when I initially met my surgeons back in December. There were so many questions I forgot to ask, including how much hair would be shaved.  When questions like that would come to mind I would call and ask the docs. My doctors were SO RESPONSIVE. My mom and sister, who both work in healthcare, could NOT believe that the surgeons actually called me back themselves 9 times out of 10.

When I called Dr. Kutz about the hair shaving question he said he usually took about 3 finger breadths. That didn't sound too bad to me, but then I was left wondering how big his hands were! ;) What do you always pray for before a surgery? For the Lord to guide the surgeon's HANDS. And shoot, I hadn't even looked at mine!

I think he only ended up taking 1/2 of a pinkie finger! No complaints here. I guess it was enough to do the job. I also had to ask him how big the actual hole in my head was...about the size of a silver dollar coin.

9 weeks out and life is really good. You can continue to lift up my "dry eye" when you get a chance. I went back to the ophthalmologist this week and it wasn't a super encouraging appointment.  She ended up putiting a punctal plug on my top lid as well.  We shall see. I am also continuing the steroid drops and other eye meds too.

I am also still adjusting to being deaf on that side.  It is weird but not overly disabling.  Usually just lends to some funny stories and my kids shouting, "Mooooommmmmiiiiiieeeeeee!"

Wait, they did that before surgery!

Thursday, April 11, 2013

Initial MRI - Acoustic Neuroma Part 4

I really do have to laugh now when I think back to how nervous I was to undergo a 30 minute MR scan. The thought of being in a closed tube for that long, and needing some sort of poke to get the contrast dye in me, literally undid me. Open MRI was not an option.

The night before the MRI, I was doing research via Dr. Google to find causes of sudden hearing loss in hopes of solving my case and therefore getting to cancel the 1/2 hour tube adventure.

In fact, I actually found two causes that I apparently deemed reasonable enough to call my ENT 8:00PM on a Tuesday night no less! Actually, I think I texted Dr. Thomason (we are friends from church...does that make me seem less crazy? or at least less of a control freak?), and he called me back. I will just blame it on the steroids that I was taking. ;)

So, what two causes did I present to my doctor? Cause 1) Aspirin regimen -  I have been taking 81mg of aspirin daily for almost 14 years in effort to thwart any clotting problems due to a blood disorder that I was blessed with from my Dutch ancestry. According to a few sites, tinnitus (ringing in the ear) can actually be attributed to long term aspirin use. Voila! I thought wow...this is totally it! I even told this exciting news to Jerry. Cause 2) TMJ syndrome - Due to some other life stresses going on last fall, I knew I had been clenching my jaw in my sleep. It was causing a radiating pain into my temple area. And alas, Dr. Google also tied TMJ to tinnitus. I have never been diagnosed with TMJ disorder, but I was willing to self diagnose in order to avoid the MRI. Again, Jerry was made aware of this exciting discovery! ;)

Tim sweetly listened to my probable causes and then tried to explain the different types of hearing loss and what would be measurable, etc. I know he was using his best lay person terminology, but it totally went right over my head. ;) After trying to explain more, and me not really understanding why my finds weren't as conclusive to him (and definitely reason to cancel the scan)...he said, "Kerry, you NEED to have the MRI done tomorrow."

Okay, gotcha. *sigh*

Our prayer the entire week we knew of the upcoming scan was for the Lord to remove the anxiety surrounding it. However, also during that week, countless well meaning friends shared their woeful MRI accounts with me. Yep. So, I knew the day of that I was not going to be able to face it without a little help from medicine.

Thankfully (I guess?), I suffered a full blown panic attack on a flight many years ago...before 9/11. We were on our way to Wisconsin for a family event and were experiencing major turbulence as we approached Lake Michigan. I had flown countless times and experienced turbulence before, but this was different. I had convinced myself the plane was going down. Thankfully my sister, also an RN, was talking me through it because the steward was less than helpful. I remember him saying that I should imagine that we were on a roller coaster ride. What? That made no sense to me and I responded back, probably in too loud of a voice, "But there are no tracks underneath the plane!"

I survived, but was not ready to jump on an even smaller plane to finish our route from Chicago to Milwaukee. I really wanted to rent a car and drive, but Jerry, nor my sister and brother-in-law, were game for that plan. My BIL offered to buy me a drink at the bar to calm my nerves, and I took him up on it.

As a believer in God and his power I am not sure where to stand on the use of alcohol and especially prescription medicines to calm occasional anxiety. More on that later. But in effort to be open and completely honest, I did turn to Xanax the next time I flew. And it was for a mission trip no less. Ugh. We were headed to Peru just a few months after 9/11 and wow, that medicine is something else. Just .25 mg and man, it had me thinking...the plane could go down...not a big would be okay. Crazy!

So ever since then, my doctor will write me for very small amounts of Xanax for flight anxiety. Just enough for each leg and no refills, of course.

On Wednesday 12/5/2012, I went to my morning ENT appointment and then took a *little* more than my typical flight dose at lunch.  I can't remember what Jerry and I talked about while we ate, but I showed up to my MRI appointment without a care in the world!

It went great and I expected to hear the results in a few days. So, I knew it wasn't good news when Tim himself called me, within just a matter of hours after it. I will recap that fun phone call in part 5.

Thursday, April 4, 2013

Follow-up ENT Appointment - Acoustic Neuroma Part 3

After experiencing a sudden hearing loss one week, and my initial ENT appointment the next, it was time for my follow-up appointment with Dr. Tim Thomason's partner, Dr. Constance Zhou.  Zhou is pronounce "joe".

Our biggest prayer between those two appointments was that my hearing would return. I had been put on quite a dose of steroids in efforts to recover my hearing. The meds were interrupting my sleep terribly and I was becoming more and more of a mess. So, it just seemed like it would be nice if there was actually a purpose in taking them. ;)

On Wednesday, December 5th, we left Jade with Joanna for the day and Jerry and I headed first to Dr. Zhou's office in the morning and then to the MRI that was scheduled for later that afternoon.

The first item of business at the ENT's office was to get my hearing rechecked.  I was hopeful that there would be some improvement, but just based on how I had been hearing since starting the steroid regimen, I wasn't very confident. Sure enough, the audiologist didn't have good news. There was a questionable slight improvement in one tone in my left ear. Only 1 tone! Only slight improvement. I did not like this news. In fact it sent me into a bit of a panic as I was trying to remember the list of problems that Tim had mentioned could cause a hearing loss like this...acoustic neuroma, Menier's disease...not even sure what else. And I hadn't dared to google any of them either.

I was really disappointed. Jerry and I sat down on a bench just outside the hearing test booth because Dr. Zhou almost had a room ready for me. Jerry knew the look on my face. I was not far from crying. It was at that moment when I knew if I talked that the tears would start to flow, that I saw Tim. He was in between patients and came over to us. I managed to spit out, "There was no improvement in my hearing, Tim". He said very sincerely, "You are going to be okay. You're going to be okay." I can't say that at that moment I really believed him, but he was right. Here I am 4 months later...doing much better than "okay".

We met Dr. Zhou (delightful!) and she went over my chart and gave me some hope that the steroids may need a little more time to work. Which meant I needed to still keep taking them. Ugh. I could be the poster child for every negative effect they might have on a person. So. not. fun.  She told us about the possibility of doing steroid shots directly to the ear if the oral steroids did not work. It sounded interesting to me in effort to regain my hearing, but there were some risks with that too, mainly that sometimes the hole in your ear drum doesn't close and they have to fix it surgically. Bottom line was that we didn't have to decide that day, though the sooner we did the shots, the more likely they would be to work.

Dr. Zhou confirmed that I would have my MRI that afternoon and we should know more in a few days just based on it. She was also upbeat about the MRI...restating how rare it is for them to come back with anything. So after a quick stop at the lab to draw way too much blood ;), we left there contemplating steroid shots to the ear (video)...which at that time it seemed like a really big decision.

If only we had known all the decisions that were ahead of us.

The MRI will have to be its own post...I was so nervous about it. I even spoke to Tim the night before thinking I had come up with a good reason not to need it. Ha!

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