Under the Category of "I need to get a life..."

So, it's been a month since I got the little rod in my skull and the little snap-like abutment on my head. I am happy to report that healing is moving along right on track. Kind of wish my head wasn't still numb, but I guess I am used to it at this point.

A couple of my baha friends had told me before I had the surgery that once the sight is somewhat heeled, it is lots of fun to brush one's fingers across the top of the abutment and be able to "hear" it. Yep, all true! Now, when I am bored by whatever is going on in my world, I just put my finger over the abutment and let 'er rip! It is freakishly cool. So if you happen to be sitting around with me and see me smiling for no good reason, just take a look and see if I've got a finger pressed to my head.

I also discovered another new noise sensation -- if I snap on the little white plastic "healing cap" it makes a really cool sound as it snaps on the abutment.

Jeez, I really DO need to get a life, don't I?

The Unveiling

This week marked two weeks since my baha surgery, and time to get the dressing off and stitches out. Went into NYC on Wednesday and the surgeon undressed and un-stitched everything and then proclaimed her work to be excellent. Not being able to see around the side of my head, I had to wait until I got home to be able to get a good look at things for myself. Eek. Did you know that I have what appears to be rivet on the side of my head???? Frankly, I am not sure whether to be excited or totally creeped out.

Actually, it isn't as bad as I feared. The abutment is small, maybe as big around as a pencil eraser and sits almost flush with my head. That is reassuring as I would sure hate to get it caught on my brush... The incision is also quite small and eventually won't show at all. At the moment, the little bit of my head that was shaved for the surgery is starting to grow new hair and it itches like crazy. These are the things no one tells you about...

I am trying to get an appointment scheduled for mid-February to see the audiologist who will install the processor and show me how to use it. Seems like a long ways away, but I am sure it will be here in the blink of an eye.

One more step in the acoustic neuroma journey...

Thanks ...

First of all, can I just say how surprised I am to be staring the 2010 holiday season square in the face? Didn't I just put away the Santas and the Christmas decorations? And, wasn't it just a few days ago that I stashed my Reindeer socks for another year? As they say in the comics ... Holy Crap, Batman!

Like most of my fellow Americans, I like to take a little time on Thanksgiving to really reflect on the many things for which I am thankful. Topping the list is that I am married to possibly the best guy in the world (yep, that's you, honey!) And, along with that, I am grateful that all of our parents are in good health. I'm grateful for my wonderful friends who've been there no matter what. And, I am grateful that God invented turkeys and chocolate (no, not in the same bite, but close...)

And, strangely, I am even grateful that a brain tumor arrived in my life a few years ago. Yes, you read that right. And, no, I haven't lost my mind. Of course, I am not particularly happy that I grew a "blob" in my head, but on the other hand, look at the amazing people I've met as a result of this! Would I have ever met Lorenzo in Ireland? Or Hrissy in Bulgaria? Or David in LA? Or Kay in Texas? Or Jan in Chicago? Or Lori in Virginia? Or Wendy on Staten Island? And, the list goes on and on. These are people I met when I was learning about acoustic neuromas ... they are the ones who said "I understand" and really meant it! They celebrated the victories and commiserated on the bad days. And, they still do.

So, yes, I have a great deal to be thankful about. I shall raise a glass of Willamette Valley Pinot Noir later and say ... Her's to YOU!

Oh, and I just came up with one more thing to be grateful for ... thanks to Wendy for telling me the the baha "healing cap" could come off accidentally and if it did, one could simple snap it back on the abutment. Thanks, Wendy - you just saved the surgeon getting an emergency page on Thanksgiving from an hysterical patient...

Step One of BAHA

It is official - I now have another piece of titanium in my head! Willie and I headed into NYC bright and early Thursday morning - check in time at the hospital was 10:30 so we figured we would leave at 8 AM just to give ourselves plenty of time. As it turned out, we hit every conceivable delay on our way in and arrived right at 10:30, after a 2 and 1/2 hour commute. Needless to say, my stress level (and blood pressure) were peaked out by that point. However, we made our way to Day Surgery and got registered, then off to our little room. Got changed into the ubiquitous hospital gown and grippy socks (yes, a complete fashion statement) only to learn that the surgeon was running late.

The nurse came in at 12:30 to escort me to the OR - yes, patients walk into the surgical suite rather than getting rolled in on a gurney. When I arrived, there were about 7 gowned and masked people there - the nurse introduced me (while I stood there in my gown and socks feeling like a bit of an idiot) and then I hopped up on the table where the residents began hooking me up to things. As is usual, one minute I was awake and the next minute I woke up in recovery.

Turned out that the surgery ran about twice as long as expected (not sure why, but I will find out when I see the surgeon on the 1st). Poor Willie was frantic with worry by the time the surgeon finally came out. As for me, I couldn't see anything when I woke up - turns out that they had put gel in BOTH eyes so all I could see was blurry shapes. Once I realized that I wasn't blind, I felt quite a bit better.

Seems that my heart rate and blood pressure were both pretty elevated, so they ended up keeping me in the Recovery Room until a little after 7. Mostly, it was boring. I gummed around a piece of graham cracker and drank several cups of apple juice. I hadn't thought about the fact that one side of my mouth doesn't really produce any saliva, so when I tried to eat the cracker it just turned into a hard, dry ball in my mouth. It got stuck to the roof of my mouth and then I couldn't swallow the damned thing. Well, at least it kept me focused on something other than my head.

I had a hell of a headache when I woke up - my skull was just throbbing. Fortunately, the nurse was quick to shoot me up with something. Gotta love those drugs.

Had a couple of quiet days - basically no bending, sneezing, cleaning, cooking, etc. Today, however, I am planning to get out for awhile. I need to walk a bit to get my equilibrium back. For whatever reason, my balance took several giant steps backwards after the surgery. I am guessing the anesthesia probably affected my brain's ability to keep me upright. Anyway,I am sure a little walk will help.

I was brave enough to look at the "wound" yesterday. Basically, I can't see a thing because it is all covered with a breathable, waterproof dressing. Somewhere under that is the rod and abutment. I guess I will see them when the dressing comes off on the first. The bald patch is pretty big - guess they had to shave quite a bit of hair to get a clean site. But, most of it will grow back - other than the small patch where they remove the hair follicles. And of course, there are a bunch of numb spots on my head again. Sigh. I was just getting some feeling back and now it seems that I am back where I started. Oh well.

So, I am now done with what I sincerely hope will be the last operation I ever need on my head! Let the countdown for the processor begin ...

Date With the Drill

Monday morning in NJ. Waiting for my tech guy to show up to fix one of the computers - it is being extremely uncooperative and making horrid noises. I am sure it is in a death spiral, just waiting for confirmation...

Other than that, I am doing the final countdown to my Date With The Drill. Yes, all hurdles have been overcome and I am scheduled to have the titanium rod implanted in my skull on Thursday. Gee, when I put it that way ... yuck. Actually, the approval process went surprisingly smoothly and the insurance company gave the go-ahead very quickly. So, I am "lock-n-go" for this Thursday. Should hear from NYU tomorrow with a definite time. I expect things to go smoothly, and will be back to give you the post-implant report later this week.

Cheerio!

Titanium Girl

Yes, I am on my way to having yet another piece of titanium in my head - this one in the form of a rod. It will go nicely with the plates and screws that are there already - kind of rounds out the hardware situation in my skull, don't you think?

So, yes, I am on my way to a BAHA. I tried every trick in my limited book to get Aetna to approve Dr. Roland to do the surgery, but they denied it. He is not "in network" so they wouldn't budge. It was a setback, but after a day of pouting, I went on to Plan B.

I should mention here that I am quite friendly with everyone on Dr. Roland's staff by now, including Irene, who does all of his surgical scheduling. She also handles the other neurotologists in his practice, including a freshly minted young neurotologist who does bahas!! So when we got the word from Aetna about not covering Dr. Roland, Irene suggested Dr Cosetti, who IS an in-network provider. Had my initial consultation with her on Wednesday of this week, and got the call yesterday with my tentative date for surgery! Mark your calendars - Nov. 18, time to be determined. And, by the way, Dr. C did her Fellowship in Otolaryngolgy with Dr. Roland.

Woot Woot! Those of you who are SSD will understand why I am thrilled about getting a hole drilled in my skull - those who aren't may think that I am totally creepy and weird. Think what you like. In two weeks, if all goes according to plan, I will be sporting a titanium rod and a little "abutment" on the right side of my mastoid bone. I am going to be the ultimate "show-and-tell" item.

Technical details - the surgery takes about 1 hour and involves removing a bit of hair (permanently) on a dime-sized patch of my head, pulling back a flap of skin, drilling a hole, screwing in the rod, stitching the skin back, putting on some sort of festive dressing, and sending me home. Simple. I will have to wait about 90 days to get the processor, which is what will allow me to "hear" via bone conduction. It will also provide yet another show-and-tell opportunity since I will then have a small box affixed to my head. Wow. I am a fashionista in the making.

So, that is the baha news of the week. Send out a few good thoughts that Aetna approves the procedure quickly and without incident!

A Moment on SSD

I was hanging out on the Cochlear site, specifically on the BAHA section this evening and came across something that really resonated with me. Hopefully Cochlear won't be irritated at me for copying this verbatim...

For people who suffer from SSD, the limitations presented when this loss occurs are life changing. The reality is that many with SSD have to make very significant life changes. Simple everyday activities, such as those listed below, can become stressful and challenging:

* Crossing the street
* Attending professional meetings
* Going to restaurants
* Interacting with friends and family at social gatherings
* Bicycling
* Jogging
* Driving a car


In group situations loud sounds can be overwhelming and the simplest things in life can become major obstacles. In many cases this leads to the individual with SSD isolating him- or herself - both socially and professionally.

This is probably the best and most succinct piece I have ever seen about being Single Side Deaf. In fact, there is nothing I would add to this. Everyone who lives with, or knows someone who is SSD should take a look at this - it will help you to understand what life is like for us. Not looking for pity here, by the way.

I am in the beginning stage of getting a BAHA. If it can mitigate or eliminate any of these issues, I will consider it completely worth it to have a bolt in my head. And, as Willie pointed out, if I decide I don't like it, I'll still have something to hang my dirty clothes on...