Did someone say orange jello?????

Hospitals are not the place to go if you need to rest.  We all know this.  Meds every four hours, vitals every four hours (but not the same ones as the meds - why? I don't know) and other interruptions to your rest.  That being said, my stay at hospital was uneventful and both Michael and the staff did everything they could do to keep me comfortable.

So first things first, a little tidbit that I learned on the aforementioned bed ride from surgery to the inpatient ward, alcohol swabs rock!  I know, this is not the tidbit you thought I would mention, but they do.  For some very strange reason, they help stave off nausea.  So picture my arrival into the hospital room with an alcohol swab perched delicately on the tip of my nose....I am sure I made at least one person giggle along the way.

But wait, you say, I thought cochlear implant surgery was an ambulatory procedure.  Well normally it is, and the original plan was to have me overnight in the PACU (post op ambulatory care unit) and leave bright and early in the morning.  These plans were foiled by my ossified labyrinth; the extra work and hours necessitated bed rest, an inpatient stay and observation.

So bed rest, not fun....but the beds they have at WRNMMC are interesting to say the least.  These beds have little magic fingers, its like those old motels where you could put quarters in the bed and it would vibrate or...anyway, every few minutes the bed would shift to relieve/prevent pressure points, AMAZING.  According to my nurse, they got these special beds with the influx of GWOT injured soldiers as so many of them were bed bound for so long. A nice little reality check for me and the struggles I was having that night.  Certainly put things into perspective for me (even though that was not her intention).

We arrived too late for dinner, really no problem for me, the thought of food just about made me want to get sick again. Anyway, after getting me settled a bit, the nurses' aide took Michael on a tour of the floor and the patient canteen.  This is when he brought back manna from heaven, nectar of the gods and whatever other superlative you can think of for amazing food, ORANGE JELLO.  He also brought water and ginger ale, but it is the orange jello that remains fixed in my mind.

Orange jello, it feels so good on a sore throat and you can actually taste it when your taste buds aren't quite working right, it was phenomenal.  So much so that Mike has made sure that I have it for the my at home recovery too :)

It is funny, the soreness and pain is not just at the incision and implant site.  I mean the part of my head and ear around the implant is sore, kind of like a horrible headache and ear infection combined and the incision hurts and pulls and I try to avoid having even my hair come in contact with it the external part of my ear, but there is also tenderness, sore muscles and bruising from whatever position I was trussed in for those seven hours in the OR.  This is the pain I wasn't expecting and seems to have bothered me the most.  The easiest way for me to describe it is that I feel like I have been in a car crash......Obviously my head was in some sort of clamp, I like to think of it as a vice grip because there is bruising right below my ear on my neck this is the spot I complain about most.  Imagine that, drilling about in my head for hours at a time and I am complaining about where they had me clamped.  It is what it is and each person is different, but this is what bothers me the most. 


The pain in my jaws and neck made chewing was particularly difficult as was opening my mouth very wide.  Hence the (should I say it again?  Of course....) ORANGE JELLO!  I will say the other hit was lunch, tried and true of third graders and convalescents alike, grilled cheese sandwich, tomato soup and a blueberry smoothie.   In case you wanted to know, it was a f'real smoothie (I kid you not - I even took a picture).  I know, I can't believe that I didn't take a picture of the orange jello, it was so important to me, but the f'real smoothie certainly tickled my (albeit sore) funny bone.  You just never know what you are going to find entertaining at the hospital....boredom and pain medication make for strange bedfellows.

 So after many "field trips" with Michael around the floor to get me sea legs back, a wet wipe bath (the ultimate in refreshing experiences, NOT), and a trip to radiology for a CT Scan where another lady as stylishly dressed as me, but hey she had pants, gown and robe....they hadn't given me in of that back (no fair!) in a wheel chair in the hallway waiting for "patient transport" told me "Nice Hair" came the visit we all had been waiting for, my ENT and surgeon came in for the last time, to check the incision site and write discharge orders -  YEAH! Even he liked my "hairdo" and complemented me, he said because of it, they didn't really have to shave much hair for the surgery.  So without making you wait any longer, I give you THE Cochlear Implant hairdo of the year.  I can not begin to tell you how long it took take these out, but they saved my hair, and to who ever put them in, you have my eternal thanks.

Finally, what all of this hard work by the doctors and nurses looked like on Wednesday night when I left the hospital.  It isn't pretty, but most of the scarring should be hidden by my hair as it grows back in.  It is only hair, and it will grow back.  All in all, a small price to pay for the chance at bilateral hearing again.

 

A special thanks to the night shift nurses on Wednesday, they worked doubly hard to get us out as a huge storm was coming and they wanted to get both Michael and I home safe and sound. :)

 



Gee, I guess I DID need a new hole in my head......

Looking back, I feel for Michael - Tuesday must have been a VERY long day.  We reported in at the Walter Reed National Military Medical Center (WRNMMC for short; Bethesda for us old timers) at 0615.  I would say the smartest decision we made was spending Monday night in Bethesda MD instead of making that drive around the Beltway in the morning ... that and booking Mike a hotel room for Tuesday night.

So far all is good, the staff at Walter Reed is very professional, polite and helpful.  Pre Op is a two step process, check in, change into a gown, pee in a cup and wait (all the while thinking fondly on your morning cup of coffee that you didn't get....sigh).  Step two is where it gets interesting: wander down the hall with your escort in your extremely fashionable hospital gown, slipper socks, scrub pants and robe to the actual pre-op area.  At this point I was feeling a bit nervous, so the first words out of my mouth to Michael once the door swung open was "Hey, do you remember the movie Coma?" Not sure why really, except the curtains were being suspended by this plastic tubing on the runners, and it just looked like those tubes the bodies were suspended by in the movie.  Anyway, gives you a glimpse of my food and caffeine deprived mindset at that time.

Yet again, I can not say enough about the doctors, nurses and aides.....this is a theme you will see running through this post.  They were phenomenal.  At this point they confirm what surgery I am having, ask history questions and start my IV.  This is when I start to blubber a bit, going into surgery is no small thing and knowing that these fine doctors are drilling into your head is even more daunting.  Props go out to the Anesthesia Nurse, she was sweet and funny and really got my into the right mindset before wheeling me off.  Remember this nurse, I believe she is responsible for the spectacular photo in the next posting. The last thing I remember at the point is a kiss from Michael.  It was about 0930.

Cut to Michael, he spent the day in the surgery waiting room drinking coffee and watching Germany trounce Brazil, and me, well I laid around and kept him waiting and waiting and waiting.  I was in for two procedures a labyrinthectomy and removal of he offending schwanomma and then the cochlear implant installation.  It was supposed to take five hours.  Seven hours later they wheel me into post op and Michael gets the report.

My condition has always been special: first having an acoustic neuroma detected at the ripe old age of 36 is unusual, then to have such a small one cause complete deafness by being so appropriately (maybe that should be inappropriately) placed made it even more so.  Then there is the fact that it is an "intralabyrinthe schwanomma" , NOT on the acoustic nerve, wow, even more interesting (so they say).  Now, to top it all off, the doctors crack my head open and dig down to my inner ear to find it completely ossified. WOW, they were not expecting that and it definitely took longer to clean everything out.

The Cochlear Implant installation was textbook and went beautifully (according to both my ENT and the Audiologist).  In an email I got from the Audiologist today, he said that my "auditory nerve response in the OR was gorgeous."  Of course, that is not a predictor of end results when they turn on my implant, but it isn't a bad thing either.  Means the nerve is still awake and responding after 8 years of lazing about doing nothing.

Post Op Recovery room, everything was wonderful: Michael and the nurse were doing their best to get me to rejoin the cognizant world.  I was thinking there might have been rainbows and unicorns, everything was FINE, just FINE, then those lovely meds started wearing off and BAM!  Wow, was I sore and in some pretty serious pain. A couple of Tylenol 3s and an IV push of something fantastic and life was much more bearable.  Ready for the bed ride to my hospital room for the night.

I have had single sided deafness for eight years.  I can only hear out of my left ear, the right is completely dead.  No biggie, right?

Take a second and try to imagine:

Eight years of turning around in circles to my left whenever I hear a noise I cannot see and trying to figure out where it is coming from.... .can you imagine how hard this is for a runner? I can't avoid a car that I can hear but can't see because I don't know where it is.

Eight years of telling friends, family and colleagues "I can hear you but cannot understand what you said" or "please look at me when you are talking, it helps me understand" or asking someone (at home and elsewhere) "where are you?" to have them say "here" and me responding "where is here?"

Eight years of jockeying for the best place to sit at the table in a restaurant; of asking for a different table in the same resaurant since I can NOT hear a thing in the middle of a large, noisy room; and of moving to the right side of people so I can listen with my good ear (otherwise I have to look at you when we are talking and walking.....something I don't do well, I am not the most coordinated person).

Eight years of never listening to music on headphones or a movie in the airplane (did you know that different sounds come out of different sides of your headphones ... so much for Stereo!) The things I have missed.  But I am truly thankful, as things could be so much worse.  Really, I know this and am thankful for everything that I have (and more importantly, what I don't have).

The first question people ask is "Have you always been deaf on that side?" My answer "No".  Then the follow up question is "What happened?"

So here is that answer in a nutshell: At some point, I developed an acoustic schwanoma.  Big words for a teeny, tiny benign tumor in my inner ear.  It just happened to settle into the "perfect" spot to cause the most damage.  My inner ear is dead - no hearing and no vestibular function - but lots of tinnitus (ringing in my ears) just to make things fun.

So, why write now?  What has changed and why do I feel the need to talk about it?

Well, I am very, very lucky.  I have been approved to participate in a study on the effectiveness of cochlear implants in single sided deafness....I am getting a Cochlear Implant on July 8th.  Sadly, Cochlear Implants are not FDA approved for single sided deafness (SSD) and not everyone can get one.  To that end, one of the reasons for this blog is to record my surgery, recovery, and ultimate successes and failures with learning to hear again.  I hope that the United States catches up with Europe and approves this therapy for everyone.  Speaking of FDA approval (and insurance companies too, because they don't pay for non FDA approved therapy), did you know that for most people hearing aids are not a covered expense?  Do you know HOW much hearing aids for SSD cost (at least $5,000).  You have to wear two, one on the good ear and one on the bad.  The one on the bad side transmits sound to the good side....trouble is, it doesn't work very well (refer to the first few paragraphs).

Join me on my journey and wish me luck, we start tomorrow.

Lori