My Eardum Buzz doesn’t appear to have gotten any worse. Not any better, but still about the same size.
My Eardum Buzz doesn’t appear to have gotten any worse. Not any better, but still about the same size.
The one thing I’m really missing is taste. Between the anesthesia and pain killers I’m on, plus the fact that I bit my tongue during the operation and it took a few weeks to fully heal, my sense of taste has been really off. Foods that should be bursting with flavor are bland. Salty barely registers, and sweet is almost nonexistent. It’s gradually picking up, but I’m really beginning to appreciate my sense of taste!
As for my rehabilitation, Physical Therapy (PT to those of us in the know) is helping me a lot to adjust to the dizziness. They tell me, though, that my nerve will never un-stretch, so it’s a matter of me adjusting to the new norm.
The scar is also clearing some, and Tara is having me put on sun-screen on my neck every time I go out. Speaking of which, I had a big weekend, going out to my favorite Indian restaurant for lunch (which helped with the taste problem) on Sunday and to the mall on Monday! Big Adventures!
Between all the sleeping while I let my body recuperate, I’m catching up on a lot of TV. Tara and I watched all of Top of the Lake, which was amazingly good and I highly recommend it. We’re on Arrow, which was a bit slow at first but picking up as the season progresses. When Tara is not around, I’m watching one of the best American TV shows of all time, I Spy with Bill Cosby and Robert Culp. Although its a very simplistic good guys v. bad guys theme, the banter between the two stars is priceless, and the show actually got into some pretty deep issues, especially for the mid–1960s. If you’ve never seen it, it’s available on HULU.
So, I’m still humming along, and still gob-smacked by the kindness of my community and the support they are providing for Tara, the kids and me. Thank you all.
Be well, do good work and keep in touch…
Gaining your sense of balance back is a remarkable adventure. It’s now three weeks after having my nerves played on like banjo strings, and I’m still walking around like I’m half–drunk. Half–drunk but without the great euphoric feeling you get before the hang over. Now, everything I do is an adventure: Going up and down stairs; showering; getting a drink in the kitchens; carrying… anything. And don’t get me started on going outside.
But the recovery moves along, and I did, indeed, even have my first adventure time out of the house on Sunday, when Tara and I went to meet the wonderful Martha at a near-by Starbucks. It was wonderful being outside on such a beautiful day. I got to get out of my PJs and robe and wear my big boy clothes for a while, and it almost felt normal. Normal except for the big scar running down my head onto neck, that is.
Despite what the doctor said, I feel fairly certain that I will have a noticeable scar on my neck — Tara tells me that the picture she took after the operation is not suitable for polite public consumption so I’ll spare everybody. Not that I’ll mind that so much. As the saying goes “Scars are just tattoos with a better story.” But some advance warning about that and the small titanium plate they put in my skull would have been nice.
In fact, I was not 100% confident that they didn’t just take out a big hole in the right side of my head. Until the feeling started coming back this week, that is. As nerves mend and anesthetic clears, I can begin to feel again over. That’s a good thing, but another adventure as the pain creeps in as well.
But the adventure I didn’t expect — the one I’m most astounded and delighted by — is the continuing adventure in support we’ve experienced from all of our communities. I am overwhelmed by the kindness. People who are helping with rides, food, understanding, and warm thoughts. Thank you all.
I’m looking forward to getting out more in the next few weeks as I get geared up to go back to work.I’m still tired and shaky, but I’m starting physical therapy, and hope to see you all in person real soon.
Be well, do good work, and keep in touch…
I had my follow-up visit with my neurologist today. Both he and my in-home physical therapist — whom I met with yesterday afternoon — agree that I am coming along nicely. I’m still off–balance, tired, and spacey, but I’m not sure most people could tell the difference. Seriously, Tara and the kids are taking extremely good care of me: helping me up and down stairs, getting me food, taking me to doctor’s appointments and just sitting and keeping me company when I’m awake.
Talking to my neurologist today, though, we’ll take next steps carefully, putting off any decisions until I’m completely recovered. The most obvious option right now is something called the cyber-knife. Since it uses radiation, though, it’s a one time shot, so not something we want to use haphazardly.
This is apparently an extremely rare condition, and, as my neurologist kept saying, there is no playbook for what comes next.
The other great thing that happened today was I got my suture out, and my head feels a lot better. Having your head sewn together with a piece of plastic twine might sound comfortable, but trust me–It isn’t. I even think my hearing improved afterwards, and I know that the whooshing sound in my ear has decreased a lot.
Thank you to all of my friends who have reached out with their support. I appreciate all of you. Especially the ones who sent cookies ;-).
be well, do good work, and keep in touch,
A little over a week after I emerged from surgery, and I’m ready to write a little update. I just took some heavy medication, though, so I’m not really sure how long I’ll be able to last.
If you’ve been reading Tara’s updates, you’ll know that things did not go as planned. When the surgeons opened my skull, the expected to find a acoustic neuroma — a benign tumor on the vestibular cochlear nerve — which they were going to remove. What they found was a tumor on the facial nerve that could not be removed without complete loss of facial function on that side.
I asleep during all of this, though. The last thing I remember was walking back with Tara. The next thing I remember was waking up in the ICU wondering where Tara had gotten to.
The next few days were not particularly pleasant. Fortunately I also don’t remember a lot of those hours. I was sick for 26 hours straight—waking and vomiting, waking and vomiting — and no water. But once I got into recovery things started getting better, especially once Tara could stay with me and I decided to come home Saturday after my family visited.
I’ve been mostly sleeping the last several days, with my family taking excellent care of me. I still feel as weak as a bag of kittens, but feeling stronger everyday, and just thankful to be through this segment.
So, I got the operation, but no resolution. Yes, I’m trying to take this as well as possible. I’m told that there was no way of knowing this was inoperable without the operation. There are always other options, though, and, once I’m back on my feet I’ll start exploring.
Don’t empty my mind! Please, I beg you! My mind is all I have! I’ve spent my whole life trying to fill it!
— Dr. Hanz Zarkoff
By the time you read this, I will either be in surgery or out of surgery; I’m writing this the night before, but scheduling the words to post mid-morning, about half-way through my operation.
So, let me tell you a bit about my little brain.
First off, I’m very fond of it and hope to keep it for at least a few more years to come. One of the worries I have with brain surgery is that things might change, for the better or for the worse. I read about one guy recently who had a traumatic head injury and woke up a mathematical genius. I’ve joked a few times about having some cybernetic implants put in while they are poking about in there, but mostly I just hope I don’t lose my hearing or my rugged good looks.
Second, I like feeding it good stuff. I am constantly reading books, playing games, and watching videos to keep my mind busy. My biggest worry, post-op, is less to do with getting through the nausea and vertigo, and more about how I will keep my mind occupied without input. I’m more worried about being bored. Of course while I’m going through nausea and vertigo, I may be plenty occupied. But If I’m feeling better, and the lovely Tara is not there to keep me company, I hope to get into some deep thoughts. That’s something, quite frankly, in the age of constant input, I don’t do enough.
I’m taking one book with me, though: Carl Sagan’s The Demon Haunted World. It’s my touchstone book. When I asked Ann Druyan (Carl’s Widow) which book you should recommend to someone who has never read anything by him, that’s the one she recommended. I don’t know if I’ll have time or energy to even look at it while I’m in the hospital, but I’ll be glad just knowing it’s there.
Anyway, back to the operation 😉
be well, do good work, and keep in touch
In two weeks—29 April 2014— at around 7:30 in the morning, I will be receiving surgery to remove a benign tumor—an acoustic neuroma—from my inner ear canal.
Although this is not literally a “brain tumor,” it is brain adjacent, so tricky to get to. It’s a common type of tumor centered around a nerve cluster leading between my ear canal and my brain that control my right facial expressions, balance, and hearing.
My surgeons will likely take about six hours to extract the tumor. I will then need about six weeks to recuperate. The surgeons will be going from the back of my skull in order to reduce the risk of hearing loss.
I’ll lose some hearing in that ear (I already have) and there’s a 50% chance I’ll lose all hearing. There’s also a 10% chance of nerve damage on the right side of my face. The good news is that even if my right nerve for balance is damaged, my left ear will, overtime, compensate. Oh, and there’s a 1 in 200 chance of death, but let’s not dwell on that.
I wanted to spell out the facts for my friends and family. I’ll be writing more soon, and be blogging about my experiences as possible, although I doubt they’ll let me do a selfie from the operating table.
There are definitely worse things that I could be reporting. The tumor is operable and not cancerous. The chances are good that the the doctors will be able to completely remove it. I may be sporting a hearing aid the next time you see me, and I might be slightly less symmetrical in the face, but other than that I should be fine.
Either Tara or I will post updates here or on Facebook as news comes in.
be well, do good work, and stay in touch…