Day One

I'm posting from the Univ of Wisconsin Health Center where we are waiting to begin my second day with Jackie Diels. Yesterday was a long day - six hours! Spent most of the morning doing evaluations of my facial movement, including all the weird (inappropriate) movements. Jackie took pictures and video, so we'll be able to see the starting point.

We spent the afternoon "stretching out" my face! Yep, that's pretty wieird sounding, isn't it? At one point, I am pretty sure I had my entire fist inside my mouth. There were a few places where I was laughing so hard I had to stop. However, the amazing thing is that I could feel a difference immediately!!

Apparently, I have a lot of knotted up muscles all over my face - and this is at least part of what is causing my mouth to pull up and my eye to squint. She is having me work on each of the knotted places - these are the random "sore spots" that I've had all over my face since I started to regain feeling. It was great to finally find out what was causing all those sore spots - they feel very sore to the touch, almost as if I had a severe bruise.

The highlight of my day was when Jackie said that she thinks a lot of the weird movements are caused by these muscle spasms, and not necessariy synkinesis. We'll have a better idea on this as we work on it today and tomorrow. However, that would be great news since muscle spasms are curable whereas synkinesis is not. Which means that I can fix at least some of this. I found myself welling up when she told me this. I guess what I realized at that moment was that I was terrified that she was going to tell me nothing could be done. Wow.

We got done a little before 4 yesterday and headed back to our hotel room It snowed all day, but was a very light snow with less than an inch accumulation. So, since the roads were fine, we headed into downtown Madison to go to Harvest, a restaurant I had read about that features farm-to-table food. Everything is local and/or organic. Very small menu - maybe 10 entrees and 6 starters; however, everything was perfectly prepared and absolutely delicious! And, perhaps best of all - noise level was very low, so we were able to chat through dinner without a problem and I left not feeling frustrated and tired! Yay!

I wrapped up the day with about an hour of facial stretches in the room before we both hit the sack and slept.

So, it was a very good day and I am feeling optimistic.

By the way, Happy Birthday, Dad!!

Off to Wisconsin

Well, it hardly seems possible, but my appointment with Jackie Diels is finally almost here! Willie and I are flying out to Wisconsin on Sunday and will be spending time with Jackie Monday, Tuesday and Wednesday.

For those who don't know, she is a preeminent neuro muscular facial therapist here in the US. I started to develop synkinesis (abnormal facial movement) about six months ago and we made the decision in early December to make a trip to see Jackie. This was the earliest we could get on her calendar, and wouldn't be my first choice of times to travel to Wisconsin, but ... what can you do? A lot of people have asked what is going to happen over the three days that I am there - well, I don't really know! How's that?

What I do know is that she will be working with me to develop exercises that will help me to retrain the muscles that aren't moving right. Basically what happens is that when the nerves heal, they mis-connect, causing the wrong muscles to move. For example, when I smile, my right eye squints and tries to close. And, if I blink my right independently, that side of my mouth curls up. You get the idea. Left on its own, it would probably get worse. If treated, I can learn to control it. Synkinesis is not reversible, but it is controllable.

Several people have asked if my facial nerves have completely healed. The answer is no, but the parts that aren't working are not very noticeable. My right eyebrow/forehead still don't move (hey, no wrinkles!) and the corner of my mouth doesn't have a full range of motion, which is what causes me to slur sometimes, and to unexpectedly eject food at other times. Yep, I'm a party waiting for a place to happen.

I hope to have some good before and after pictures when I return - if so, I'll post some here so you can see what's been done. And, in the meantime, send some good thoughts my way - direct them towards Madison, WI, please!

Sunday Dinner

Continuing on the food theme ... yesterday was Sunday Dinner with the Family. Now, those of you who aren't part of an Italian family may not be familiar with this, so listen up. First of all, Sunday dinner is actually more like a late lunch, but with a dinner sized meal.

I have gradually over the years trained everyone NOT to expect the pasta course for our Sunday dinners. I still think I am secretly viewed with suspicion on this, by the way. However, my kitchen, my rules! The rule that you absolutely must have way more food than anyone can possibly eat, however, remains unbroken. So, for five of us, we grilled two chickens. Big juicy chickens. With all of the appropriate side dishes. Sorry, Lorenzo, no cannoli for dessert this time, only fresh fruit.

Another part of the Sunday Dinner tradition is that everyone must talk all at once, and at top volume. Now, if you have two hearing ears, this can be challenging, but imagine for a moment that you only have ONE hearing ear! Yes, all of the sounds come flying at that one poor ear, all at once. The end up is that it just sounds like a bunch of random words. To make it more fun, because everyone is trying to talk at once (hey, they have a lot to say), the volume keeps escalating as each person strives to be heard above the din and roar. Oy vey. (Yes, that's for my Jewish friends because your Sunday Dinners look suspiciously like this, don't they?)

Ah well, in spite of the noise and the over abundance of food, it is a part of the Italian family tradition that I enjoy - even if I have to retreat to my Cone of Silence when everyone leaves ...

Bon Appetit!

The Need to Feed - Reposted

Odd, I posted this a few days ago, and it dated it about a month ago, so let's try this again...

So here's the deal ... I married into an Italian family 9 years ago. And, it has been a wonderful and enriching experience. However, one thing still puzzles me and that is the Need to Feed.

Whenever we go to my in-laws (or any other family member. friend or casual acquaintance) we MUST bring food. And, it almost doesn't even matter what the food is, just so long as it is edible. A box of grocery store cookies will qualify. Now, maybe I am an unsophisticated heathen, but in my family and circle of friends, you just show up! (And in my younger and poorer days, I would show up with laundry.) And this whole food-giving thing extends to visits of any duration - even a quick stop for coffee requires some sort of food.

And it works in reverse, too. Whenever my in-laws come over for dinner or a visit, my mother-in-law has to bring something to eat. And, if I tell her that she can just show up, that the real gift is spending time, it causes all sorts of stress and anxiety. It is just unthinkable to show up empty handed!

It complicates the whole visiting thing - you can't just swing by to say hello. First you have to find someplace that sells food so that you can arrive bearing food. And, the food must be served during the visit! Don't even think about saving it for "later!!"

This has all caused me to question my own visiting protocol. Are my friends and I complete losers because we visit without food? Have we been transgressing some unspoken "food rule" all these years? OMG, are other people secretly saying "oh, look at that poor, clueless woman - showing up without food?" Crap.

Schwannoma Shuffle (or Slide)

Some of you may not know that acoustic neuromas are also sometimes called Vestibular Schwannoma. Okay, pretty much only surgeons refer to them as that, and now you can clearly see why we lay-people call them ANs. But I digress.

The use of either vestibular or acoustic all refers to the 8th cranial nerve (stay with me, it gets more interesting) which controls hearing and balance. I am now minus this nerve on the right side which means that I'm deaf on that side (which you already know) and my balance is occasionally challenged. Which leads me to today's post.

Do you know a dance called "electric slide?" Yes, the very one that we forbid to be done at our wedding. It's one of those group things - hop to the right, two steps left, etc. I'm sure some people love it, but I'm not one of them. I really have never needed any help to look like a clumsy idiot. And now I need even less help.

The balance thing usually manifests itself (for me) in a stumble, which in turn sometimes results in a fall, but that's another story for another day. Today's story is really about the stumble. Picture it - you momentarily loose your footing - you know, a little stumble? Most people can recover quickly from this with no one the wiser. Not me - when I stumble, it turns into a full-fledged slide and shuffle. So the other day when I found myself shuffling/sliding quickly across the kitchen floor, I had a vision of doing the electric slide. After all these years of faithfully avoiding doing that damned dance, now I seem to do a version of it spontaneously. Crap, I'm doing the Schwannoma Slide. Isn't that just irritating as hell?

A New Direction

So, the whole board of directors thing didn't work out, for a number of reasons. And, rather than feeling disappointed, I actually feel strangely relieved. Surprising, right? I truly believe, though, that all things happen for a reason. And, this clears the way for me to stop procrastinating about writing a book. I now have NO excuses! So, this week, I started the book outline - gosh, I feel so professional!

I am going to use my own experience in dealing with this life-changing event to write a book that I hope will help other people survive their own life changing medical events. Kind of a survival manual. I want to inject as much humor as possible into it, while providing some practical advice as well. Haven't found the right title just yet, but am working on a list of ideas. If you have any suggestions, please share them!! I'm all ears (okay, in actual fact I am ONE ear, but you get the idea.)

Things I Didn't Hear...

Ah, the joys of being single side deaf! Directionality is, of course, one of the bigger challenges. We all have stories of running all over the place trying to identify the source of a ring or beep. If anyone were watching us do this, they'd be doubled over in laughter. In my case, I am usually muttering to myself while running...

Last night I was watching TV when I heard one of our cell phones ringing. I quickly muted the TV and the damned cell phone quit ringing (before I could locate it of course). About 10 minutes later, the cell phone started ringing again, and again I muted the TV - no ringing. Hm. Yep, it was a cell phone on the TV the whole time. Duh.

This morning I am sitting in my office quietly working while the young lady who cleans for us is making the house sparkly. The cats always get freaked out by the sound of the vacuum, so they are hiding under the bed in the spare bedroom (directly upstairs from my office.) Now, the cats are still in a state of semi-Jihad withe each other, so when I heard a growling noise, I quickly headed upstairs. It wasn't until I was halfway up that I realized it was my stomach that was growling. No kidding. Do you think I could make this stuff up????