AWKWARD TURTLES & ACOUSTIC NEUROMAS

For any of you who are still reading this blog and are bound and determined to see this hearing aid debacle through to its end, I wanted to let you know about the most recent turn of events. Several days ago, I received a lengthy but polite letter from Medical Mutual stating, in so many words, that they would in no way assume responsibility for the cost of the SoundBite device. I am more than welcome to submit an appeal free of charge within the next 180 days if I feel that I have a good reason to appeal. Or if I feel that the decision is just ridiculous. (It may not have said exactly that.) Which of course it is. I told myself that I would not use this entry as a rant against the injustices and evils of the insurance industry but I would like to say just one thing. If insurance companies cover prosthetics which are defined as "artificial substitutes and necessary supplies that replace all or part of a missing body organ or limb and its adjoining tissues; or replace all or...

I hope that everyone had a fantastic Thanksgiving and that you have an even better Christmas! In spite of the cold weather, crazed shoppers, and the excessive amounts of calories I intake, the holiday season has always been my favorite time of year. Even more so this year, when I have so much to be thankful for. I'm going to keep this entry short as I have little news and even less time to write. I mainly wanted to hop on just to follow up on the whole hearing-aid fiasco as it's turning out to be. The visit with the audiologist at the end of October went well and was incredibly helpful. At the end of all the testing and talking, I ended up with my top choices being the Phonak Cros and the SoundBite, with the SoundBite being my 1st choice. At this point, it's going to come down to cost and ease of upkeep/maintenance since I'm planning on hauling one or the other with me to Ecuador in a few short months. As of the moment, the Cleveland Clinic is working with my insura...

6 months. Woo hoo! Here I am over halfway to my 1 year post-op AN-niversary. I love being able to say that. 6 months! 6 months and I feel whole again and healthy and am embracing life and cherishing the little things with more tenacity than I ever did prior to May 11th. To mark this happy occasion, I went to my home away from home, the Cleveland Clinic, to check in with my favorite doc. Since my right eye still wasn't behaving the last time I met with her over the summer, she wanted to see me back this month to make sure that I really was 100%. I'd be lying if I said it wasn't strange driving back up to the clinic after so long. After my last followup, part of me felt like I was finally closing that chapter on my life. Tumor's gone. Case closed. But being back on the road to the Cleveland Clinic felt like I was reliving those crazy moments all over again. The anxious, sweaty-palmed drive up there in the 4:00am darkness on the morning of May 11th. The week long rolle...

Routines are funny things. It seems like we're always desperate to escape them. We count down the days until our vacations, find exciting new jobs, finally try that odd recipe that calls for cherimoya (cheri-what?). Perhaps finally take the plunge (quite literally) and go skydiving. And here's the funny thing. Once those moments are over and done with and we get swallowed right back up into our daily grind, those moments seem like they never happened. Like they're only genuine memories if we really take the time to convince ourselves that they are. That's exactly how I feel about my surgery now that I'm nearly four months out. Now that I'm more or less back into the swing of things, it almost seems like it never happened at all. Which is crazy when I think of all the blood, sweat, and tears that went into this ordeal. Of course I'm still dealing with the few remaining "souvenirs" of the experience (more on those in just a second) but I'm happ...

I'm so thankful that my recovery process has continued to speed along without any more major obstacles. After all the ups and downs of the last two months, it's great to wake up consistently feeling great and with only tiny reminders that I ever had brain surgery. But sadly all of this smooth sailing means I have less and less to chat about and, well, what can I say? I miss you guys! This experience has not only allowed me to "meet" some great new people but it's reminded me of how much I enjoy blogging. Perhaps a new blog of my everyday rants and ramblings will be in order? In the meantime, I do have a few updates to share. I'm happy to announce that I have completed my physical therapy (I've got the t-shirt to prove it) and was sent home with only a few exercises to continue doing (though I can't say I've been faithful about keeping up with them). Overall, I rarely experience balance issues anymore and that's certainly been a huge facto...

...it looks like there may be a bit of a delay in acquiring it. Here's what went down this past Friday. Last week, I had my consultation with the audiologist. She's a local provider, unlike Dr. Woodson, so instead of hiking back up to Cleveland for the zillionth time, I took a ten minute drive down the road. A nice change of  pace. I was the only person at the office at 10:00 in the morning which meant my wait time was only 5 minutes and Dr. Bonko (yup, that's her name, no lie) herself came and escorted me to the back. She actually relocated from Cleveland two years ago so she is familiar with Dr. Woodson and the rest of the gang up there. Anywho, we had chatted earlier in the week on the phone about my interest in the Phonak Cros so all of the sample models were laid out and ready to go when I got there. The entire meeting only lasted about ten minutes since I'd already had my hearing test, knew exactly what I wanted and she already had a specific model in mind f...

I'll admit I've been pretty camera-shy since my surgery. Even though my friends and family are convinced my face looks normal and that my facial weakness is "barely noticeable," I've still refrained from all photo-ops. It's one thing to feel like yourself and another thing entirely to look in the mirror or at a photograph and wonder where you're face went. And then I got my smile back.  I've already gushed about how excited I was (and still am!) that I could now flash a toothy grin with the best of them. I finally didn't care that my right eye was still a little dysfunctional or that I was rockin' a crazy hairdo. I could smile again and things were alright with the world.  Liz, a fellow AN-er and faithful reader of Awkward Turtles, requested that I post a picture of said smile. So, Liz, this one's for you. I continue to wish you all the best with your upcoming surgery and hope this entry serves as a happy reminder that you'l...

Happy summer everyone! I couldn't be more thankful that the beginning of my favorite season and my six week milestone are just two days shy of each other. The fact that I'm able to get out and do some of my favorite summertime activities has truly been the icing on my cake. This week I managed to go swimming, biking and tubing all without any adverse effects (and very little fatigue). The plan is to continue challenging myself by gradually increasing my activity level and the variety of activities. I'm thinking maybe a hike for this coming week? My MRI came back with excellent results.  Iggy appears to have left the building for good and I won't need another scan until next May. My follow-up with Dr. Woodson went almost as well. She very impressed with the improvement in my balance and was nearly as happy as I was that my smile had returned fully. The only wrench in the works was my right eye. It still doesn't blink properly, tear, or close completely. So instead ...

That's right--only one more week and I'll have reached the end of my "short term" recovery period. After my six week update, I'll only be posting "Turtle Tracks" on a monthly basis since whatever progress I make from that point will be more gradual. While there are still a few things I'm waiting on to make a comeback, overall, I'd have to say I feel pretty functional. I do have my moments (i.e. my bonfire experience) when I'm reminded that I'm not quite  there yet, but they are lessening in number. This coming week I make (hopefully) my last two trips to the Cleveland Clinic. First, for my follow-up MRI to ensure that Iggy is truly gone for good and, second, for my final checkup with Dr. Woodson. (Can I say I'm a little bummed I'll never see Dr. Seth again?) If I get the all clear, I'm going look into doing a 90-day trial with the Phonak Cros hearing aid. It's ironic that a hearing aid is what I originally went to the Cl...

...my back porch last night. On a whim, my family decided to have a bonfire yesterday. It was a beautiful day, we were all home, and, well, why not  have a bonfire? So my dad ran off to the store to secure the hot dogs and giant marshmallows, my mom collected firewood, and I took charge of setting things on fire. We had a lovely time goofing off, burning food, trying to see if any of us actually knew a legitimate campfire song. By 10:30, the fire had begun to die down and I could feel myself starting to doze off. I decided to make a beeline for the house so I could get first dibs on the shower and head to bed. I uncurled myself from my chair and headed for the back porch. And that's when the funny thing happened. Although I was taking very deliberate steps forward, I found myself moving further to the right and away from the porch with every step I took. At first I thought my mind was playing tricks on me. I had eaten quite a few marshmallows, and it was late and quite dark....

Happy one month ANniversary to me!  This  is the milestone I've been waiting for. Everyone--my doctors, other AN-ers, my dad--told me that the four week mark was when I would really start to feel like myself again. And, for the most part, I do. My balance is still not 100% and my right eye still doesn't close entirely or tear, but now I can attempt to start driving and begin to be more active. Now I can take those first steps to re-entering my life. Certainly exciting times! So is it weird that part of me is just the slightest bit terrified? I've lived a sheltered existence these past four weeks. Outside of my weekly trips to therapy and the Cleveland Clinic, I haven't really left the house. I know there'll be reactions to my hair (or lack thereof). Perhaps the occasional double-take or stare that lasts a couple seconds too long. I know I'll have to field questions about my general well-being and requests to re-hash the last four weeks in vivid detail. I may...

I know I've been a bit blog happy these past few days but I have to squeeze in one more entry for the week. You've all heard me complain endlessly about my incision and the swelling and the fact that I still have to wear my pressure bandage three weeks out. Of this entire recovery process so far, that's probably been my biggest hurdle. Soo...I'm happy to finally share some good news regarding this situation. Since the removal of my stitches on Thursday I've been a bit, um, lax, about wearing my bandage. After three weeks it didn't seem to be accomplishing much outside of causing me excessive amounts of misery, so Thursday I only wore it at night and Friday I didn't wear it all. Well, by Friday evening the swelling had increased to the largest it had been and was actually beginning to cause me pain. I reluctantly had my brother put my bandage on that night and resolved to start wearing it more faithfully. The following day, Saturday, I kept it on until the ...

Even though I'm technically supposed to wear my bandage until the swelling has completely resolved, now that my stitches are out I tend to keep it on only at night (or if I'm lazing about the house). Which means I finally had to address the situation of my hair this week. After much contemplation and experimentation with what exactly I could and could not do with my hair, I wound up with the following 'do. (You can still see the swelling. Uhhh...go away already!) Which is based on this gal's 'do. I know it's wild, edgy, a bit risque but when you've got lemons you've got to make lemon ice, right? So...thoughts?

Here we are at the close of yet another week. And what a week it's been! Even though my time in the hospital takes the cake medically, I think emotionally this week has been the hardest for me so far. Somewhere in the midst of having to spend yet another week with my bandage and stitches, coming to terms with my loss of hair (and determining what to do with it), and starting to feel like myself but not getting my body to cooperate, I found I was losing a lot of my motivation and confidence. Frankly, I was just exhausted. Again, not physically, but mentally and emotionally from trying to stay positive when it seemed like I wasn't making much progress. On top of that, I felt like I had to stay optimistic for my family, too. At the first signs of angst they immediately either look for ways to cheer me up or admonish me to take heart and not sulk. I know they have only the best of intentions, but it can be wearying. YET, as I began to type up my "Turtle Tracks" for th...

I know it hasn't been that long. Not even three weeks yet. Everyone tells me that things will heal. In weeks. In months. Maybe in a year I'll look and feel like I did a few weeks ago. The thing is, sometimes when I wake up in the morning I've forgotten I'm broken. The feeling is fleeting to be sure. But for a moment, or a few moments, I feel just like I did before Iggy. Before all of this. I feel like I can hop out of bed and throw on my scrubs and drive to work. Or my workout gear and race off to teach a Zumba class. I feel like when I smile my face will crinkle up the way it used to and my other dimple will be there. Or that when I run my fingers through my hair that's what I'll find. Hair. And not peach fuzz and a lumpy line of stitches. Sometimes, I miss me. I don't mean to be depressing. I know my entries are usually brimming with humor and a large helping of sarcasm. I like humor and sarcasm. They're pretty fantastic. But the path to healin...

While I was hugely relieved to be finally going home from the hospital on the 18th, I have to admit part of me was a little terrified to leave my cocoon of nurses and doctors who were monitoring me round the clock. I mean how on earth was I supposed to keep track of everything? Meds, therapy, wound care...it was all just slightly overwhelming. Thankfully, my mom, trooper that she is, stepped up to the plate so all I had to do was putter along and do whatever she told me. To help keep things straight, I'm going to put a list here (yay, more lists!) of some of the things I had to do post-surgery so you can have a better idea of what you may need to do in the days and weeks after. (Please keep in mind that your post-surgery care is entirely dependent on the symptoms/conditions you end up with and will vary from person to person.) Medications: This area will definitely differ from patient to patient as there is a wide range of post-surgery symptoms. For example, I have been blesse...

Can you believe it's already been two weeks since Iggy's demise? What a whirlwind it's been! If time keeps up this happy little pace, I'll be at my 6 week milestone before I know it. I had the pleasure of seeing Dr. Woodson and Dr. Seth yesterday afternoon for my first post-op visit. The plan was to remove my bandage and stitches and send me on my merry way. Yes, that's right. Was . Over the course of this past week, not only did the fluid around the incision refuse to dissipate, but I developed a large seroma (collection of fluid) at the site of my hip incision as well. It actually started leaking ( leaking !!) Tuesday night and Wednesday my dad had to apply a pressure bandage to the area to control the swelling. Folks, let me tell you, by the middle of the week I was feeling every bit like the birthday balloon that you find three months after your party and was left to die a slow, leaky death. Between the bandage wrapped around my head and the mass of gauze ta...

(Note: Apologies for this entry. My focus has been really off today and, although I know it's English, I'm not entirely sure what I typed.) Yesterday was my first session with the vestibular therapist. It was also my first trip out since coming home from the hospital. So far, cars and I aren't really getting along. I guess I didn't notice as much on the way home from Cleveland as my mind was entirely occupied with thoughts of escape. However, yesterday I realized that I get nauseous if I keep my eyes open for too long. I don't get dizzy so much as I think my poor little brain is getting over-stimulated. I've found that it helps to pick a point in the distance and focus on that and when that gets old I just use the time to nap. I'm hoping this won't last very long, just until my gaze starts to stabilize a bit more.    Bored Speaking of which, the whole not being able to focus thing is totally wreaking havoc on my Comprehensive List of Things to Do...

We all know that I worked diligently to properly pack and prepare for (should I say it? oh, alliteration!) my post-surgery hospital stay. I hosted interviews, compiled spreadsheets, used up several stacks of Post-Its, etc. etc. But when it came right down to it, what did I actually need during my week long sojourn at the Cleveland Clinic? First and foremost...My mama! Oh my goodness, I can honestly say I don't know what I would have done without her. From the time she arrived on Sunday until I was discharged on Friday evening she was constantly by my side. She was my hero, my saint, my Mother Theresa. My helper to the potty, expert sponge-bather, and masseuse. For those of you preparing for surgery, I  strongly  suggest having someone who can stay with you round the clock if at all possible. It doesn't matter if it's your spouse, sibling, boyfriend, or Great-Aunt Shirley, just have that one person there who can look out for you. Nurses are amazing, wonderful souls bu...

I know I've already described what I look like post-surgery but, as the saying goes, the picture is worth a whole lot more. Below are a few snapshots of my various and sundry "battle scars" from going down a round with Iggy. The inside of my right arm. The docs decided this was either from the IV or how I was positioned during surgery. This little guy my mom found on my left ear after surgery. (We also found a matching one on my tailbone.) Again, the docs figured it was because  I was lying on it for so long. The incision on my right hip from the fat graft measuring 2 inches And the Big Kahuna itself, also measuring 2 inches wide and running from forehead to nape Soo...hair styling ideas anyone? :)

(dictated by me, typed by big bro) Ookay, folks, it's time. Time to hear all about what really went down behind those OR doors and the subsequent week in the hospital that followed. Be forewarned, I'll not spare any details. So for those of you who may be queasy of heart or mind, you might want to skim this entry. I know that as a person who had never been hospitalized or had major surgery prior to this, I wanted to know everything beforehand. I mean everything . To me, the less surprises I faced once I actually got to the hospital the better. Days 1-2: I won't say too much about the day of surgery as I was only conscious for a few hours of it and my dad already took care of documenting that bit. We arrived at the surgery center a little before 5 and by 5:30 I was registered and heading back to a "holding room" to be prepped. I spent a little over an hour back there getting gowned, IV'd, and barraged by a host of medical questions. The nurses...

Ohh, it's so good to be back! I'm sorry it's taken me so long to get back on the blogging board but sadly my eyes and the computer screen are still not cooperating and its difficult for me to type for very long. (Which is awful because I have soo much I want to share!) I'm going to try and see if I can rope my older brother into assisting me with some of these first entries. I just want to make sure I get everything down while it's still fresh in my mind. This entry is going to be another quick one, but I wanted to give everyone an update on my new "post-surgery self." Brain surgery really takes it out of you and, as expected, I'm not quite functioning the way I used to a week ago. So what does the newly sliced and diced Amanda feel like? Well... - I have a 1 inch + strip of shaved hair running from my forehead to the nape of my neck on the right side and a beautiful set of stitches to match. The doc ended up shaving off more hair than she had ...