That Sucks

When I first learned, in March of 2008, that I had this thing in my head called an Acoustic Neuroma, I was completely lost. I felt fortunate in the respect that I had good medical insurance, but that wasn't much help in terms of finding surgeons who actually knew what to do with an acoustic neuroma - what I didn't want was some lay-neurosurgeon who viewed AN surgery as some big adventure. I remember going to my insurance company's website and doing a search for "neurosugeon". Well, that was horrendous - it produced hundreds of results (I live in the greater NYC metropolitan area) with absolutely no way of ascertaining what type of neurosurgery any of them did.

I remember being paralyzed for the first few days. I'd sit at my computer and do endless searches on my insurance company's website, trying to find out what kind of surgeon I needed. Willie put out a query on the ANAUSA website and we got a couple of names - I ran them through the website and NONE of them was a participant in my plan. I really spiraled into despair at that point. In fact, I would say that was the most stressful part of this entire journey. I called a friend in NYC who called her ENT and was given 4 names - NONE in my insurance.

At the time, I didn't know that there are actually 2 surgeons involved in the surgery. Why is that significant? Because if either one of them was in my plan, there would be a way to get the procedure covered. I went through several days of what I recall as sheer hell until I found the name Golfinos in my insurance plan. Bingo!! He worked with another surgeon named Roland who had been highly recommended through several sources. It all worked out. Golfinos admitted me and submitted all of the insurance paperwork, including approval for the insurance plan to cover the cost of Roland. I was extremely fortunate that I was able to get two such remarkably skilled and experienced surgeons. And, I was able to have surgery at one of the leading medical school hospitals in the country.

We ran up against some post surgical challenges since my recovery was not a smooth one in many respects, and I ended up needing to be under the care of Dr Roland for a long time (still am, in fact.) We were able to negotiate a rate with him for my ofice visits and we pay cash for all of them. Our insurance company does not pay one red penny, but it is worth it to me to continue under his care since I have had so many challenges with facial nerve recovery. And, I really, really like him!

I have gotten my follow up MRI's with Dr Golfinos and that's gone along just fine since he's covered by the insurance.

And then, today, I get a letter in the mail from Dr. Golfinos' office saying that as of June 23, he will no longer accept my insurance. What???? Shit. I must say that it has left me feeling ... a bit scared. What if the damned thing grows back? I would have to seek out other surgeons since paying out of pocket for brain surgery isn't really an option. Yes, I know that I am looking at the dark side. I'm entitled to feel upset for a day. And, then, I'll figure out what to do. Best case scenario, I will continue with my aftercare with Dr Roland and have him read my annual MRI. Worst case, I will have to look for new doctors. But that would suck. Really suck. I'm hoping for Plan A...

On March 19, my beautiful friend Lynn Marie Delaney passed away after a long and hard-fought battle with cancer. Lynn was a stage actress and singer and she had a soft spot a mile deep for animals. And, she collected art glass because it appealed to her sense of beauty. So isn't it fitting that, before she passed, she arranged for her family and a couple of her closest friends to receive a beautiful "Spirit Weight". And, that each weight contains a small amount of Lynn's ashes. The man who creates these beautiful works of art created the very first one to commemorate the passing of his beloved dog, who had cancer.

Well, my own Spirit Weight arrived this weekend and, as you can hopefully see from the picture, it is just beautiful. It has a place of honor on our fireplace mantle, in the living room where "the girls" spent so many great weekends together both before and during Lynn's illness. I like to think that she's hanging out with us and smiling.

And, if you want more information, visit the artists website at http://www.marcboutteglass.com

Hyperacusis

For the last two years, I've had an uncomfortable sensitivity to noise. And, frankly, I haven't given it much thought - I just make sure to have an ear plug or to have my finger at the ready (to jam into the ear, of course!) Then, today, I was browsing the Acoustic Neuroma Assn forum and saw a topic on hearing sensitivity and - lo and behold - there is an actual name for it. Hyperacusis. Huh.

I did some reading up on it (thank you Google) and found myself nodding my head and mumbling to myself - "yep, that's exactly what happens." And, then I vaguely remembered Dr. Roland mentioning this as a possibility to me early on when I complained of noise discomfort. I was in the throws of dealing with post surgical infection and facial paralysis at the time, so it must have gone in one ear ... and right back out the same ear. (HaHa - Get it?)

In any event, it is something of a relief that I'm not just being a wimp. Turns out that there are quite a few people out there who have varying degrees of hyperacusis. And many accompanied by tinnitis which I thankfully don't have. So the good news is that I have company and I am not losing my mind; the bad news is that there really isn't a cure for it. So, have ear plug at the ready and avoid certain noises (kids screaming, small dogs barking, sirens, loud music, etc). Not so bad.

"The Book"

I think I've referenced this in passing a few times .. I decided late last year to write a book. This whole acoustic neuroma experience has changed my life in ways I never could have anticipated - some good, some not quite so good, but all valid. My own experiences got me to thinking about all of the people I know who've faced down their own life-changing medical "events." Which raises the question - how do we all get through it and adjust to the "new" us? I am not sure I have the full answer yet to that question, but writing helps me to work through it.

Okay, now I'll get to the point ... A major focus on the book is how people cope with and process both the initial diagnosis and the aftermath, whether it be acoustic neuroma, diabetes, fibromyalgia, celiac, cancer or a host of other conditions. What happens in your mind when the doctor says "you've got (fill in the blank)?" And what happens later when you have to realize that some things in your life will not be the same as they were "before..."? So, I'm looking for stories. I won't use real names in the book, but I would really like to include some quotes and stories from real people. Anyone up for this? If so, just send me a message and we can work out the details.

Thanks, in advance!

Happy Mother's Day

This one goes out to my mom, who has been a friend as well as my mom for these last 54 years. My mom faced the death of a sister who was way to young to die, then the death of both parents. But she's a brave, strong woman. And I guess God knows that because 12 years ago, he gave her lung cancer. Now, that is a test. My mom's life changed forever then - she now has only part of one lung, but she has an indomitable spirit. And, if you met her, you would never know that she doesn't have quite as many essential body parts as the rest of us. She's my hero.

Love you, mom.

Two Years Ago...

Well, hard to believe that it was two years ago yesterday that I checked into NYU to have brain surgery. And, at about this time 2 years ago, I was finally getting ready to be transported from the Recovery Room to what is called a Step-down ICU room. As near as I can tell, the step-down room is pretty much like any other room only with more roommates and a lot more tubes, wires, beeps and buzzers.

I spent the first night after surgery in the Recovery Room instead of Neuro ICU simply because NICU was full up. So, the other Acoustic Neuroma patient and I were tucked into a corner of the Recovery room with our own Neuro nurse. It wasn't the most pleasant of nights, but that probably was as much to do with waking up with a big incision in my head than with the accommodations.

I would be hard pressed to describe what that first 24 hours felt like - other than to say that it was unpleasant to the extreme! Funny thing is that the thing that bothered me the most was the pressure dressing on my head - that friggin' thing was wrapped completely around my skull so tight that my ears were smashed against my head. I remember my damned ears hurting more than anything else - which is actually funny when you realize that I had a 6 inch incision in my head and a 2-inch incision in my belly. In fact, I remember trying to slip a finger between the pressure "turban" and my head to allow my poor ears to get some room - naturally, I did this when no one was looking. I am pretty sure that this was not on the list of recommended activities.

When I was being transported from RR to the step-down "suite", one of the orderlies who was wheeling me suddenly stopped, got a horrified look on her face, yelled something at her partner about the "patient coming unhooked" and bolted back to the RR. Now, as I am laying on my little gurney in the hallway, I started to get just a little concerned. Even in my morhpine-induced haze, I intuited that something was amiss. And, when I was able to rotate my head just a few degrees to the right, where the other orderly was fumbling around, I noticed one of the tubes that was attached to me dangling, dripping blood on the floor. Yikes. That can't be good. Well, soon enough a gaggle of nurses and doctorly-looking people scurried up, conferred, and quickly got the runaway tube back where it was supposed to be. Gee, they will do anything to make sure the patient is entertained, won't they? I am happy to say that the rest of the day was uneventful.

Ah, what a difference two years makes...