Tales of Medicine and Wine...

Well, first the medical tales … we had a good visit with Dr. Roland Thursday and I left feeling very encouraged. He could see the new bits of facial movement, and feels that I am between a 4 and a 3 on the House-Brackman Scale. For the uninitiated, this is the universally accepted scale that doctors use to “grade” facial movement. Six on the scale is zero movement and 1 is 100% movement. Coming out of surgery, I was probably pretty close to a 6, so I’ve definitely made progress.

So, the big question is … will I regain 100% facial animation? Probably not. But is 90% realistic? Probably so. I’ve done so much reading in the last few months about facial nerve paralysis that I’d already pretty much figured out that a full recovery isn’t probably realistic; but I would be quite happy with something in the 90% range! At that point, it wouldn’t be noticeable to most people at all.

Dr. Roland had a new Resident and a new Intern with him yesterday, so they were hanging on his every move and monitoring my every facial movement. I felt like a very expensive science project!

Now, to answer Lorenzo’s question … Yep, I am making wine! For my birthday this year, Willie gave me “tuition” for a wine-making school. We went in with our neighbors on a half-barrel of wine, and we chose Chilean Malbec. As luck would have it, this year’s Malbec harvest was one of the juiciest in recent history, which means that it should be an excellent wine!

I missed both the crushing and the pressing, but I am on board for all the rest of the steps along the way. They have a vintner who really manages the process and tells us what to do. When you think about it, we are paying the winery for the privilege of doing their work for them. Who’s the idiot in this equation…? Ha ha!!

Everyone is invited to the bottling party, which will be sometime next year!

I’ve sent Willie off again to race this weekend (yes, I know, I am an amazing wife!). Heaven knows, he has earned some R & R time this year! Zoom, zoom, zoom!

Later, Kids!

An Eventful Weekend

So, because getting the Blinkeze wasn't enough excitement for one week...

I met up with some of my new AN friends in NYC on Saturday, and made the trip all by myself! (I forced Willie to go racing with the HeMen this weekend, wonderful wife that I am...)

So, bright and early Saturday, I set out on the 40 minute drive to the train station, followed by the 99 minute train ride into Penn Station. I must say that I was having a very good day in terms of balance, which made the whole adventure much easier. Penn Station was mobbed when I arrived, but I navigated through without mishap and headed to the Heartland Brewery to meet Eve, Wendy and Joe.

We spent a completely fun 3 hours talking and laughing - and continually asking each other to repeat themselves because we are all either SSD or very nearly SSD. It was actually pretty comical. I showed off my Blinkeze and Eve showed off her TransEar so it was a good educational experience as well as being just plain fun!

Return trip home was also uneventful and I didn't even feel completely exhausted ... until the next day. Sunday was a big nap day. However, before napping, I headed out with my neighbors, Wolfgang and Janet, to go visit our wine up at the Westfall Winery. We racked the wine (basically moving it from the oak so that we could clean the barrel). We also tasted, of course, and I am happy to report that it already tastes surprisingly good after only 2 months in the barrell.

Meanwhile, Willie finished 5th in class in his race, and is now out at Poconos for the day instructing wanna-be race car drivers. Since Willie's not the calmest of passengers, I can only imagine the butt-clenching and silent screams...

Off to see Dr. Roland this Thursday. I am going to practice my three little facial movements so that I can show them off to him when we get there... Ha!

More later...

Blinkeze!!

Got "the" phone call today from Dr. L's office saying that my eye weight was here! I immediately rushed off to his office to get it. He was there, so came out to help me put it on. While he was standing at the counter opening it up, one of his staff came over to ask if it would be okay if the techniciams came out and watched ... and before I knew it, I had an audience of 7 or 8 very interested women! They were all suitably impressed!

In all, it has been an excellent day. My brother in law, Philip, is here visiting for a few days, so he and I had a nice brother/sister lunch today. It is always nice to have some private time with Philip - if I'd had a brother of my own, I'd want him to be just like my brother-in-law.

Tonight, I am resting. As I expected, fatigue set in during the late afternoon and I had to sit for awhile. However, while I was sitting, I was blinking! First time in nearly three months! Life IS good.

How Debbi Got Her Blink Back

Okay, well maybe not entirely...

Over the weekend, I decided that I had given up too early on the opthamologist and that I shouldn't have stopped with the first one. So, I did some online research and, at about 5 pm, sent an email to a local guy who looked like he had a lot of experience with eyes. I specifically said I was looking for someone who had experience with Blinkeze External eye weights. Lo and behold, he emailed me back at about 8:45 PM (who does he think he is - a neurosurgeon or something???)

Fast forward, we exchanged several emails, and I called first thing yesterday to make an appointment. Saw Dr. Leigner this morning and got "fitted" for an eyelid weight (1.2 mm for those who need details). They are placing the order today and I am hopeful that I'll have the weight and the accompanying adhesive strips by Friday. Wahoo!!!

And for those who would like more info, here's the webpage describing the Blinkeze, along with a photo. http://www.meddev-corp.com/1%20product/Eyelid%20Closure%20Products/External%20Weights.2.htm

Meanwhile, I have taken on the Bosu Ball again and offer this picture as proof that I am conquering the ball. Note that about 1 second after this picture was taken (and thanks to Kura for being a superlative photographer), I jumped from the ball (okay, maybe toppled is more accurate...).

Hopefully the next picture will be of my Blinkeze...

Updated Photo

Thought I'd add a couple of new photos of the incision, so you can see if you agree with Dr. Louie!

The Dr. Louie Update

Got one thumbs up for Dr. Louie yesterday, expect the second thumbs up next week when he gets the results of the blood draw. BTW, if anyone wonders where the supply of blood is, all my doctors have it! Dr. L was very happy with my incision (now, there's something I never thought I'd be saying...) and we don't expect any surprises with the blood work either! Yahoo!

yes, Lorenzo, break out the petit syrah - and a nice wedge of cheese, please.

Don't think I mentioned this, but I am collaborating with a group of other Acoustic Neuroma patients to write a book. Each of us will contribute a chapter about our own experiences. The idea is to make the book available, probably through the Acoustic Neuroma Assn, for newly diagnosed patients and caretakers. The first days, weeks and months after diagnosis are such a whirlwind of emotions, and we felt that many might benefit from hearing our stories. I feel strongly compelled to make this event in my life really mean something, and to "give back" to others.

During the first couple of days following my diagnosis, Willie and I were spending countless hours scouring the internet for every shred of information about this thing growing in my head. Willie found the http://www.anausa.org website and its Patient Forum and was the first of us to post a question. We were both amazed at the support, advice and compassion that was extended to us by people on this forum. I strongly believe that my journey has been made far easier by this group of people. So, it is my intent and desire to continue to remain active in that online community and to support others as they start down this road.

Many have said that having an Acoustic Neuroma is a life changing event - I'm not sure to what extent that will prove to be true in my case, but I am certain that at least some changes will evolve from this - and they will be positive!

Okay, that got way more serious than I had planned!

So, on a far MORE serious note --- I am finally getting this wretched mop of hair on my head taken care of tomorrow!!!! Yes, it has been three (count 'em - three!) months since I've seen the inside of a hair salon. Shana is going to scream when she sees me, but I know she will then set about making me look relatively human again. Lord, nothing like three months of drugs and stress and no hair color and no styling to make a girl feel hideous! Can't fix the face, but the hair is definitely going to look great by end of day tomorrow! Pictures to follow!

Dog Days of Summer

Okay, safe to say that this has been one VERY weird year! I feel like the entire spring time was just a big blur - hey, wait, it was! Nothing like a little brain surgery to mess with your sense of time! Anyway, I was thinking that tomorrow marks the 10 week mark since my surgery.

So, it seems like a good time to recap ...

March 4 - diagnosed with an Acoustic Neuroma, a fairly rare tumor that grows on the 8th cranial nerve and encroaches into the brain when it gets big enough. Mine was mid-sized and pressing against my cerebellum. Main symptom was mild hearing loss in my right ear.

April 30 - translabrynthine surgery at NYU - surgery took about 5 1/2 hours, most of the tumor was removed; but they left a small bit behind because it was stuck to the 7th cranial (facial) nerve and could not be removed without risk of permanent facial paralysis. Also had a 2 1/2 inch incision on the left side of my belly to remove a small amount of fat to fill the hole in my head. They refused to do the entire belly, despite my desperate pleading...

May 3 - released from NYU and happily home sleeping in my own bed - or at least trying to sleep because those darned steroids wreak havoc with one's ability to sleep. They do, however, help with the swelling in the head, so it is a good trade off, I guess!

May 20 - back in the hospital with an infection of unknown origins. Had my own little petrie dish where they tried to grow a culture of the gunk from my head incision. Charming.

May 23 - home again, this time with a "PICC" line installed in my right arm so that I can infuse IV antibiotics twice a day from home. Lucky me!

June 23 - PICC line out!! Momentous day! No more IV line hanging out of my arm, no more wrapping myself in Glad Press 'n' Seal to shower - oh happy day!

Those are the highlights.

My face is still mostly paralyzed, although I am definitely getting some movement back in my right cheek. I have what I believe is a Madonna (the famous work of art, not the pop star) like smile now!

Have pretty good balance most of the time, but do still tend to tip over on occasion.

Still fighting the fatigue, but having more good days than bad. Next big dates ...

July 9 - seeing Dr. Louie, the Infectious Disease doctor, for the final blood draw and hopefully clearance on the infection.

July 24 - seeing Dr. Roland again for assessment of facial nerve and progress

Sept 9 - first follow up MRI - I'll be getting these for at least the next 5 years to track for regrowth of the tumor. Chances for regrowth are small, but then again, the chances of getting this damned thing to begin with were also small ... no sense risking the tri-fecta!

Lorenzo, you're gonna have to do better than espresso, man! At least raise a chianti, if not a Barolo...

Jules, how is your recovery going?

Kay, how are the Curly Girls?

I'll post in the next few days with the final verdict from Dr. Louie. Meanwhile, keep smiling!

I Got a Twitch!!

Okay, after watching this thing for several days, it's definite - I've got a new muscle movement on my face!! Yippee! If I concentrate really, really hard I can make the right corner of my mouth move ever so slightly. I've been working on this for awhile, and it kept feeling like it was moving, but of course it wasn't. But now, it is finally moving a bit!

Now, if I could just get my damned eye to close all the way...

Ah, progress!