Monday, June 30, 2008

Cover the Kids Eyes...

Don't want to scare them ... Here's the latest update picture. I am actually getting a little more of my smile back - okay, very little, but still...

Lorenzo, Carmen, Kay - thanks for all your support and encouraging words. You all know what this journey is like, having traveled this road before me.

This whole facial paralysis thing is really God's way of teaching me patience! Willie says that I didn't need to find such a dramatic way to teach myself this lesson ... but, hey, if you're going to do something, might as well go BIG!

Interesting "factoid" - the facial nerve heals at the rate of about one inch per month! When you look at the structure of this nerve, you start to realize why facial movement comes back so slowly - it's a long little sucker with lots of "arms". This is a case where progress is definitely measured in inches, not feet!

I detected a very small movement at the corner of my mouth over the weekend. It is teeny, tiny, but definitely something is moving. It is probably more in my lower cheek, which would make sense that that section of the nerve is one of the shortest ones. Whatever it is, I'll take it!

Gotta run!

Friday, June 27, 2008


I did that just to get everyone's attention - worked, didn't it?

Actually, I am feeling a bit frustrated. I am still really tired even after being off the antibiotics a week now. Rats. I slept 10 hours last night, and could - if I allowed myself - take a nap right now. Instead, though, I am going to see the amazing Jocelyn for a much-needed massage!

I have continuous pain in my neck and shoulder, which is probably a side effect of the facial paralysis. According to Dr. Roland, it would be caused by me holding my head and upper body differently in order to compensate for the lack on sensation on the right side of my face as well as overall compensation for my diminished balance . I am also doing most of my chewing on the left side, which , oddly, strains the right side. Well, I am turning myself over to Jocelyn to see if she can work her magic on me!

Facial progress continues to be slow, slow, slow. I honestly can't see any progress, but I am probably too close (pun intended) to it to see the subtle changes. What I DO see is a ridiculous half-assed smile which I really don't like! Okay, yes, I am whining a bit. I'm entitled to whine every once in awhile.

It's kind of funny - like most people, I was always pretty critical of photos of myself - I'd do that internal dialogue where you say - euw, what a stupid looking smile, oh, your hair looks like crap, oh you've got lines at the corners of your eyes, etc. etc. etc. Welllllll, nothing like having a paralyzed face to make you miss what you had! I have made a promise to God (Allah, Buddha, etc) that if/when I get my face back, I will NOT be critical of how I look!!

Well, these are the idle of thoughts of a woman who is now 8 weeks post brain surgery - guess I should count my blessings that I actually HAVE thoughts.

More later...

Tuesday, June 24, 2008

PICC-less in New Jersey...

Starring ... Moi!

Yesterday, Willie and I made the trek into NYC (again) to see Dr. Roland. Armed with my usual list of questions, I fired away while Dr. R wrestled the spitting sutures from my head. Interesting to note that said sutures are actually the disolvable kind meaning that my body should have just intergrated them. However, the old noggin decided that it really didn't like the knots in the disolvable suture, so it sent them packing. I am happy to say that the process of getting them out was quite simple - probalby because most of my head is still pretty numb.

While he was working, I mentioned that I had a big old scab still on one part of the incision - he chuckled in that special way of surgeons and said "not anymore!" He apparently yanked it right off. Eeek.

De-suturing accomplished, he asked if I was ready to be de-picced. I must say that, in spite of my fears about this process, it was easy and was over before I even knew it. And, Willie stayed in the room and didn't pass out (although he did say the line was vvveeerrryyy long as it was coming out...) I now have a very small dressing on my arm where the line went it that I have to keep dry for a couple of days, but otherwise I am as good as new! yahoo!

I'll see Dr. R again in a month to check on facial progress. He is optimistic that I may get my blink back by then - let's hope he's right! He said that getting the ability to produce tears will take longer, so I will have to continue drops for quite awhile. That's okay, though - I'm getting pretty used to not really being able to see out of my right eye. (Stay off the roads, people!)

We met Kura for dinner last night after the de-piccing and had a lovely dinner at an Italian wine bar. Towards the end, it got very noisy in the restaurant but otherwise it was really enjoyable. Always great to see Kura! I was, however, completely exhausted by the time dinner was over and it was an effort to walk the 10 blocks or so back to the car. Worth every minute, though!

I'll be seeing Dr. Louie in a couple of weeks for the final release for the infection. Let's hope it is gone for good!

I enjoyed my first Glad Press 'n' Seal - free shower this morning! It was bliss not to have to wrap myself in sticky plastic wrap and hold my right arm up in the air while showering - I feel like a queen! (Oh, how little it takes these days...)

Well, that's the breaking news from NJ...

Friday, June 20, 2008

HiHo Silver!!

I decided this morning to fax a note over to Dr. Louie's office so that he would be up to speed Monday morning when he returns. Apparently, that precipitated a phone call to him from his office staff. Which in turn triggered a flurry of phone calls between various members of the growing medical team.

End up - I am cleared to have the PICC line removed on Monday; and Dr. Roland has graciously agreed to do this when I am in his office Monday afternoon. YAHOO!!!! I will (barring any other changes in the plan) be PICCless by end of day Monday!!!

This all confirms my belief that it is good to be a squeeky wheel - and that we must ALL be actively involved in our medical care!

Lorenzo, go have that chianti now - and have one for me, too!

Kay, have a wonderful weekend with the girlies and Dave!

Thursday, June 19, 2008

Not So Fast, Tonto!

Well, I may have cursed myself. The IV company called me with the results of yesterday's blood draw and the C Reactive Protein level is WAY up this week. Since Dr. Louie is out of town, I have sent an email to Dr. Roland to see if he can shed any light on this.

Needless to say, the PICC line is NOT coming out Monday morning - will await all medical opinions and see if I need to go back on this or a different antibiotic.

Not how I wanted to finish the week...

End in Sight

The BIG news of the week --- Dr. Louie called yesterday to say that, barring anything unusual in the blood work from yesterday (which we'll get results from today) I can stop the IV infusions at the end of the day on Friday!!!! Oh happy Day!! It will be SO nice to be able to sleep in Saturday and not have to "hook up" to the lemon.

I am scheduled to have the PICC line taken out Monday morning - the HHC nurse is going to come over early in the morning and take it out. I will be FREE!! I won't know what it is like to shower without wrapping myself up in Glad Press 'n' Seal first!

Now the cautionary note in all of this is that Dr. Louie said that it will be 7 - 10 days before I am "out of the woods" in terms of the infection recurring. So, I'll be keeping fingers and toes crossed AND I'll be extra careful with the incision. Willie will be on "wound inspection detail" every night to check for any changes.

Hopefully next week, as the antibiotics clear my system, I'll feel less fatigued - that's something to look forward to!

Meanwhile, under the category of More Great News - Dad has his annual check up on his eye and the doctor says no change in the tumor, so he is good to go! Mom and Dad are back in Oregon and enjoying the condo life, farmers markets, volks walks and smoothies on the patio.

More later...

Monday, June 16, 2008

Spitting Sutures

...and other competitive events...

First of all, I am posting a picture of my face this week - I still can't consciously move anything, but I do think it continues to look tiny amounts better.

Now, about the suture spitting... Last night I noticed that there were a couple of raised bumps (one kind of black in the center) at the bottom inch or so of my incision. This caused a near panic for me! I calmly asked Willie to take a look, and he verified it - two bumps. So, we immediately took several pictures and emailed them off to Dr. Roland (Yes, Happy Father's Day, Doc!) In fairness, I did suggest that it wasn't urgent and that he shouldn't interrupt his Father's Day.

He emailed me back very early this morning to let me know that I have what is called "spitting sutures". HUH??? Apparently, my body isn't all that happy with the deep sutures and is trying to eject them. Nothing urgent, and Dr. Roland will take them out when I see him next month. Good grief. The surprises never seem to end... At least this one doesn't involve any return trips to NYU!!

Had a good weekend - friend Ellen came up for a visit on Saturday so we did some "girl things" and enjoyed a wonderful meal at Salt in Byram. Willie had a fun weekend of racing, although they did blow the engine about 10 1/2 hours into the 12-hour race, so were unable to finish. Still, the He Men are feeling pretty manly! Lots of chest thumping and other manly stuff.

I am going to go watch for more spitting sutures now...

Friday, June 13, 2008

I've Defeated the Blackberry...

And other tales from the northern compound...

After spending about 3 hours of frustration trying to figure the sync thing out by myself, I bit the bullet and called Verizon/Blackberry today - that was another three hours I'll never see again --- but I have conquered the Blackberry and am now getting email, calendar, contacts, etc! I feel supremely cool ... or is it hot? (Lorenzo, this just proves that anyone can do this!)

On the recovery road - I am continuing to feel better each day (although the margins are tiny) and less fatigued. I've managed without a nap for the last two days, which is a first! I am working hard on my face (hey, no comments from the peanut gallery) and am pleased to say that a few very tiny "character lines" are starting to appear faintly around my right lip. Oh, fabulous day in the neighborhood!!! I still can't actually move anything other than that one brave little muscle under my right eye, but progress is being made.

The therapist recommended something called a Z-Vibe to help stimulate the nerve. It is basically a small vibrating device, about the size of a ball point pen, that can be used on the face, lips and inside the mouth to help awaken the nerve endings. It is easy to use and feels soothing.

Willie is off racing at Summit Point (Virginia) this weekend. He just called to say that they'd arrived safely. I could hear the roar of race cars in the background and could practically smell the testosterone flowing - well as much as it can in a bunch of "middle aged men living their dream." I'm so glad that he is racing this weekend - seems that the last three months have been consumed with everyone's health issues, all of which have fallen square onto Willie's lap. If ever a guy needed a few days away, it's him! I'm planning to get together with my friend Ellen for awhile tomorrow and otherwise, just relax, read, nibble and watch some movies this weekend. Oh, and hook up to the IV twice a day (yep, Kay, I know you can relate better than anyone to this...)

I'll try to post another picture sometime over the weekend - let's see if anyone can see any differences...


Wednesday, June 11, 2008


Well, if that doesn't sum it all up, I'm not sure what would...

While my blood markers are moving in the right direction (I can't believe I'm even blogging about this...), they aren't quite where they need to be yet. Soooo - that means I continue with the IV infusions twice a day. Triple Rats!!!

I must confess to being pretty disappointed. However, Dr. Louie is doing the right thing, and I have complete confidence in him. And, another week of IV still beats re-opening this big incision in my head...

Okay, well, when you put it that way, Debbi...

So, had lunch with my friend and colleague Carl yesterday which was just great. The fact that he didn't run shrieking from the restaurant was an immediate good sign! Seriously, it was great to see someone who knew me "before" and realize that I'm still me, goofy smile and all. So, thank you, Carl!! You rock!

HHC nurse came this morning - a different nurse than last week, but just as excellent. She took about a gallon of blood - which I then FedExed off to the lab (no, I'm not kidding - FedEx ships blood!), and changed my dressing and PICC "nozzle." I mention the latter because the new nozzle works differently than the last one and I had quite a challenge disengaging my IV when it was done. That triggered a call to the HHC company, who then carefully walked me through adding a 12 inch extension to my line. Oh, never mind. That's just too weird, isn't it?

The whole reason for this HHC sage is that in the process of installing my new addition, I spilled rubbing (as opposed to drinking) alcohol all over my cell phone - which promptly died about an hour later. Over indulgence is never good. That in turn triggered a trip to the local Verizon store. After a short - and expensive - 15 minutes, I found myself leaving with a new Blackberry cell phone. So far, I've figured out how to make a call. I am now in search of a teenager to show me the other fine features of this amazing bit of electronics. And I thought the bosu ball was set on earth to challenge me...

Well, see, I feel better already. I am now going to sneak up on the Blackberry and see if I can figure out how to sync it...


Sunday, June 8, 2008

The Promised Photo ...

Okay, so as promised, here is a photo taken Friday evening. Bear in mind that my face get's "droopier" later in the day, so this is definitely me at my current worst. Still a good improvement from the first few weeks.
I realized recently that my current driver's license expires at the end of this month - which means that my new DL photo will be hideous! (Even with a normal face, they can manage to make you look bad - imagine what this will look like????)
Oh, well, in the scheme of things, it isn't that bad, really. I can always "lose" my drivers' license in a few more months when my face is better... :)

Saturday, June 7, 2008


Well, Saturday morning and here I am hooked up to my morning IV just killing time. So, I thought that it might be useful for the late-comers to see a scorecard of my surgery and progress ...

March 4 - Diagnosis of Acoustic Neuroma (also know as Vestibular Schwanoma) - These tumors are benign 99% of the time, so at least that isn't an issue!

April 30 - Translabrynthine surgery to remove the benign tumor. Surgery involves making an incision behind the right ear, opening up the mastoid bone and removing the tumor using microsurgery. This particular surgery involved taking a piece of the 8th cranial nerve out, so it always results in total loss of hearing in the affected ear. Lots of potential complications, so here's the run down of what did and did not happen in my case:

1) Single Side Deafness (SSD for those of us in the know) - yep, I'm deaf in my right ear - can't hear a thing. Actually, there's some upsides to this - if I don't want to hear what you are saying, I just have to make sure you are on my right side! And, I no longer hear Willie snoring at night, because I sleep on my "good" left side so can't hear a thing. The downside is that in situations with lots of background noise (restaurants, race track, stores) I really can't hear much individual noise - I'll be the one you see constantly spinning around trying to see where voices are coming from... :)

2) Facial Paralysis/Numbness - yep, I got that one too. Basically, I have Bells Palsy meaning that one side of my face doesn't really move - can't smile, can't blink. I am working hard trying to recondition the nerve and am told by the experts that I will eventually be almost as good as new, although it will probably take much longer than I'd like. In the meantime, I'm the one with the crooked smile and one eye that won't close all the way. You can't miss me, honest! Other than my vanity, the biggest downside to this is that my eye doesn't produce any tears so I have to keep it lubricated with drops and gel all the time. Mostly, it's just a pain in the butt! And, my vision in that eye is always blurry now - so basically I'm deaf in my right ear and can't see worth a damn from my right eye - wahoo!

3) Balance - Just a brief lesson on human physiology - the 8th cranial nerve is the nerve that controls hearing and balance. Since mine was cut, I do have some balance problems, although quite minor. Since Ethel (as we affectionately named the acoustic neuroma) was growing all over that nerve, I had been gradually losing my balance over the past year. Now that I look back on it, I can point out various incidents where my balance was definitely off kilter - although at the time I chalked it up to being over 50, being in a rush, not paying attention, etc. Because my brain had all that time to compensate for my diminishing balance, I really haven't had much of a problem with this post surgery. I do have to be a little careful in certain situations and if you know me very well, you may notice that I move slightly slower in those situations than I may have in the past. Otherwise, it's pretty much of a non issue. Score one for me!

4) Cranial Spinal Fluid Leak (CSF leak for those of us in the know) - I dodged that bullet also. There is still a slight risk for CSF, but each day that passes, the risk lowers. Score another one for my side!

5) Headaches - nope, haven't had any problem with this either - Another BIG check mark in the Positive Column.

6) Fatigue - yep, I definitely have that one! However, once I am finally able to discontinue the antibiotic IVs twice a day, that should get better. Must remember, it's just temporary!

So, you see, I am actually quite lucky! The SSD is something I can learn to live quite well with, and the facial paralysis and fatigue will eventually go away. Okay, so once in awhile, when I'm tired or do something too fast, I'll look like I had one too many drinks - but heck, who doesn't stumble now and again?!

Okay, so that's the quick scorecard. I'll post some pictures sometime over the weekend so you can see for yourselves. In the meantime, if you run into to me somewhere (figuratively speaking, of course) just remember to position yourself on my LEFT side if you want me to hear you! Of course, if you want to talk "behind my back" just stay to my right! LOL.


Thursday, June 5, 2008

Update from the PICC Queen .. or is it Princess?

Well, it has been an eventful week…

Had my first follow up appointment with the neurosurgeon , Dr. Golfinos, yesterday. He was pleased with things, and saw improvement in my face, which was especially welcome news. I am scheduled for the first follow up MRI in September so that we can have a look at what’s left of Ethel. It will be the first in a series of follow ups, but as long as I can be sedated, I have no fear of the dreaded MRI machine! (According to a friend of a friend, it is a little known fact that MRI machines suck your spirit out…)

Yesterday was the appointment with Dr. Louie, who is the infectious disease guy (honestly, that is actually what is on his card – why can’t they come up with a better title??) He said that one of my blood markers is still off, so wants me to continue the IV infusions for another 10 days – until next Friday, if all goes well. He hastened to point out that if I go off too soon and the infection comes back, I’ll have no option other than a second surgery – that got my attention!

Meanwhile, I’ve had nothing but grief with the HHC (Home Health Care) nursing company – the nurse they have been sending out just flat out scared me with her level of incompetence. I finally complained yesterday to the IV company, as they subcontract the HHC company. Well, long story short – the owner of the HHC company was supposed to be here at 7:30 this morning to draw blood and change the dressing on my PICC line – she called at 7:15 saying that she had just left and would be here in an hour! I won’t go into the details of THAT phone call – suffice to say that the woman is needs a big lesson in customer service ( she complained to me that she would have had to get up too early to get here by 7:30…hello! I'm the one who had BRAIN surgery - don't complain to me about inconveniences!) After a conversation with the owner of the IV company, I now have a new nursing company assigned – and a nurse is supposed to be here tomorrow morning to do the blood and dressing. Let’s hope…

After the morning nursing fiasco, I ventured off to my first appointment with the facial therapist and it was GREAT! I have five (5, count ‘em) pages of facial therapy exercises. There are quite a few I can’t do yet because I don’t have any muscle control, but there are a bunch that are designed to stimulate the nerve and I can do all of them. SO, I have my 3 times daily regimen! I am very excited about this! Finally, it feels like I am in control of something around here – yahoo!

I can’t believe it’s already been five weeks since surgery – wow! I expected to be feeling better by now, but I guess I am actually doing very well considering the infection setback. I've convinced Willie that it is okay for him to go racing next weekend - it is the big 12-hour race in Summit Point that they do every year. I'm glad he's finally agreed to go - he needs a break from all the sick people in his life. As for me, I plan to eat bon-bons and watch movies all weekend!! I am, after all, the Queen or Princess of the PICC!

More later…

Monday, June 2, 2008

The Burger Wars...

Ha, that got your attention, didn't it?

So, yesterday I decided that I was finally in the mood for red meat and convinced Willie to make a run through McD's for a quarter pounder. We transported the much-awaited burgers home and settled ourselves in for the feast.

Well, let me just tell you that if you have facial paralysis, things like burgers really don't fit into your mouth that well. First, I couldn't get the right side of my mouth open enough to wedge the burger in - then when I thought I had it situated, I realized that my lower lip was also in my mouth (I know, it isn't a pretty picture, is it?) The good news is that I have enough feeling on the right side of my lip to realize that I was biting it - that's an improvement.

The bad news is that sandwiches of any kind continue to be out of the question in public! The good news is that the burger was finally conquered by ripping it into bite sized pieces which I could - daintily - fit into my mouth.

See, there's more than one way to eat a burger...

Sunday, June 1, 2008

Sunday Evening ...

So, another weekend drawing to a close...

Saturday Phil, my father in law, was sprung from “the big house” (rehab) where he has been held captive since falling and breaking his hip in late April. Willie served as the official limo driver, and a stop at Burger King was the highlight of the trip. Phil was no sooner settled in on Butternut Road, when he began barking out orders to anyone and everyone in hearing range. The captain is, once again, at the helm! You should know, incidentally, that this is all second-hand, as I was safely resting at home while the caper went down.

News from Butternut today was that Phil, against all orders to the contrary, was outside traversing the stairs today … sigh. Hopefully Willie will be able to talk some sense into him…

Meanwhile, on the much tamer Tallyho Lane – I laid low yesterday and watched a couple of movies. We had an early dinner at one of the local restaurants, where I was able to test my ability to hear while enduring lots of background noise. (Not so good.) My poor left ear is really working overtime these days. It is definitely challenging to hear conversation when there is any sort of background noise - but relative to some of the other things that can happen in life, it's tolerable!

Today, Willie and I ventured out to Wal-Mart (I know, WHAT was I thinking!), Pet Smart and Shop-Rite! Any one of those would have been a challenge – but all three was probably a bit foolhardy. Anyway, after much spinning about to determine where all the damned noise (babies crying, dogs barking, etc) was coming from, we made our purchases and retired to the relative safety ofour house. Not surprisingly, a nap ensued for yours truly…

I thought I had a tiny bit of movement next to my mouth last night – haven’t been able to replicate it today, but am not giving up! I would like to have a new trick to show the docs this week!

Carrie is more neurotic than ever – I think she is really missing mom and dad. She keeps looking towards the door, as if expecting them to walk through any moment. Well, I confess that I’ve done the same a few times in the last couple of days…

Signing off from the Northern Compound…