Post Surgery: SCDS be gone! Well, hopefully

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semicircular canal

I’ve been feeling a little remiss in not having posted a full follow-up to my Facebook post about my MF (middle fossa craniotomy) surgery last month. I feel the need to offer a bit of a progress report, having just passed 5-weeks post-surgery, considering all the thoughtful concern everyone expressed, and to maybe shed some light on the experience for others who may be dealing with Superior Semicircular Canal Dehiscence.

My recovery has been steady and, according to my Doctor, predictable. Hearing is gradually returning to my left ear as the fluid and blood (from what they tell me) dries up. There continues to be dizziness with fast side to side movements, such as turning over in bed, or getting out of bed or standing up too quickly or raising my head when reaching up to put something in a high cabinet for instance.
Since I woke up from the procedure, there has been a constant buzz/whoosh in the operated ear which occasionally turns into a ringing. When I relax it seems to abate – thankfully! I am praying this is a post-op phenomenon and not a permanent new symptom.

I have only recently (last couple weeks) begun test-driving fully using my voice and singing full-out, but it seems that the autophony, my most troublesome and steadily worsening symptom, is mostly resolved. To be truthful, I have been hesitant to really test it; I know that seems sort of crazy given how maddening this has been over the last few years. I have been nervous that a loud volume might disrupt the healing, or pop the plug! (Some people do experience onset of original symptoms after a loud noise.) I guess it is also because I am afraid of of finding out that the surgery, after all, did not work.
However, I have been slowly trying it out more and more: vocal warmups with students, singing and goofing around with the girls, and even recording a vocal track for a client I am arranging/producing a song for. Fingers-crossed, it seems pretty good. Of course, though, its hard to tell, what with the left ear still being somewhat “clogged” and full-feeling, which can also cause that sensation of hearing one’s self too loudly…So whether this symptom will be fully resolved or not remains to be seen, but I remain hopeful!

Same with the dizziness – I do experience it in general, as is normal post-op as I mentioned; but it does not appear to be triggered by the singing/vocalizing. Again, I have been treading lightly. Fingers still crossed… Someone posted a question in the SCDS Facebook group today about how long these sensations (ear clogged, ringing, dizziness) last for others who’ve had the surgery, and the responses were anywhere from 8 weeks to 6 months (and beyond).

Other post-op phenomena: still hard to open jaw wide enough to eat a sandwich, and there is still a bit of pain when I attempt it. The skull on that side still feels a tad numb, but that is slowly going away. The scar of the incision itself is healing steadily and beautifully – none of the reported oozing or itchiness at any point post-op. And I wish I had taken pics of the stitches and of the scar after their removal. Seemed like the work of a quilter or a master tailor! Really, really neat. And the scar runs perfectly below my hairline, completely and totally concealed. Very little hair had to be shaved. The most significant and noticeable effect is the bit of bangs Phil accidentally cut short when removing my bandage for me…

I am eager to finally return to yoga, hopefully by the end of this week but most likely with significant modification to avoid too sudden posture changes (to avoid that dizziness I mentioned with head position changes). I also need to stop indulging in all the goodies and sweets people are treating us to, and to add in some more exercise. Although the prospect of walking in this weather is not appealing (today is snowy-freezing rain…)

I have so much more compassion than ever before for those with chronic illnesses or conditions. There are so many little ways in which one is affected, that others can’t see or guess at, and it can cause a feeling of disconnection or for some, I imagine, despair. I am truly lucky in that so many with this diagnosis have far worse manifestations than I have experienced. Some report constant dizziness and falling. Some say they can no longer comfortably sit and read a book. Some experience near constant nausea. I am also extremely lucky that I had access to the amazing medical care I received at Mass Eye and Ear. I am really glad I took advantage of it, despite my initial hesitancy and anxiety about the surgery.

One other complicating factor: my Doctor confirmed that there is also a smaller dehiscence on my right side, so after the surgical repair of my left side, I could end up experiencing symptoms on my right side that had been masked by the worse side/ear. He also reported that during surgery the temporal bone on my left side exhibited the “swiss cheese effect,” being so full of holes as to present possible future symptoms. The surgical team used a bit of my skull bone to patch the holes along that area as best they could.

Thanks again for following along on this journey which started way back when (are you still reading? Wow!) and for all the well-wishes along the way. For those of you also diagnosed with SCD, feel free to leave a comment or question here or feel free to message me through
my Facebook page. Here’s hoping I will get back to some other pursuits – maybe some new songs? – very soon. See you in the New Year! Looking forward to performing a set (with my daughter Emilia!) at the the Me & Thee Coffeehouse in Marblehead in January. Maybe see you there?

Letting off Steam: The P.O.’d Playlist

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The Real Angry Bird Yesterday I posted on Facebook that I was “really pissed off and wanted to blare some loud music” and asked for suggestions. 90 some-odd comments later, I had a kick-ass playlist and had to laugh at the nerve that the post touched. Either that, or as my friend Kate said, I know a whole lot of pretty pissed-off people.

Just the violence in the song titles is cathartic. Pantera: F @&%ing Hostile. Beastie Boys: Sabotage. Dixie Chicks: I’m Not Ready to Make Nice. Tom Waits: 16 Shells From a Thirty-Ought Six. I did listen to a good handful of them throughout the day. I also found one in my daughters’ CD collection – a scathing diatribe against the record biz by Mackelmore and Ryan Lewis called simply “Jimmy Iovine.” Last line is “I’d rather be a starving artist then succeed at getting f@&%ed.” Hell, yeah!!

I read the Dalai Lama was once asked “do you ever get angry?” to which he replied “Of course! Things happen. They aren’t what you wanted. Anger arises.” Yup! “But,” he supposedly continued, “it does not have to be a problem.”

Without getting into the context (someone I love and cherish being treated badly; ‘nuff said), it’s obvious how rarely and how reluctantly I dip down into anger. I am a perennial bright-side-looker; a positive-reframer; a riser-above-er. As Dr. Tal Ben-Shahar (who teaches a course in positive psychology I’m currently enrolled in) refers to it, I naturally incline toward “benefit-” rather than “fault-finding” (at least regarding others; I’m masterful at pointing out and dwelling on my OWN faults…). However, as I push myself to grow and get more real – more “authentic” to use the current buzz word – with myself, I embrace the idea of being fully present with the emotions I experience, however negative, before I rise above them.

Don’t get me wrong: you could visit my house on any given day (my house now, or when I was growing up), and you’d witness some sort of angry outburst, however fleeting and however insignificant the cause. But this is more “reaction;” a non-conscious, automatic response in a moment. Rising above is not an option when you’re reacting. When I was younger I used to pride myself in how good my family was at letting things out, not bottling things up the way I saw some families do. But the sort of “righteous anger” I was feeling yesterday, this is harder for me (a natural born “goodie two shoes”) than for some other people I know. The power in deeply feeling and then letting your anger out can be intense! At this point in my life, I’m curious about how that works.

Over the years, occasionally a listener will admit to me that they are a fan “of my darker stuff.” My “bright side” songs don’t do it for them so much. They want to hear me brood, lash out, maybe even complain a little bit? When I do, it is always cathartic to let those songs out. Not always as much playing them night after night… Maybe that’s an issue with the song itself and its composition or execution – a sign that I didn’t quite get it right. Or perhaps it is selfish to want to do what makes ME feel good at a gig. As Jerry Seinfeld said to Michael Richards (Kramer) on a recent episode of Comedians in Cars Getting Coffee, “our job [is] not for US to enjoy it, our job is to make sure that THEY enjoy it.” Perhaps I provide a service by venting through music, for those who don’t (or think they can’t) make their own songs up. And possibly people just need more help venting the anger than acknowledging all the good stuff.

My last album was full of mostly uplifting, good-feeling songs. Lots about giving and small moments of appreciation of the simple family life. And I do come by it naturally – no BS! I recently took a “values assessment” as part of an assignment for the above-mentioned course I’m taking, and my number one personal value was “gratitude.” That’s because I do make continual, conscious choices to be grateful, and to appreciate what is. And I mostly feel worthy of all that good juju I cultivate.

But when I dig into those deeper recesses, the negative emotions and my “shadow side,” it’s powerful but also pretty scary. That’s why it felt so good yesterday to lash out (I did scream and yell and cry first; then I reached out and posted about it on Facebook). And I sensed such compassion in the swift and steady flow of responses. Everybody’d been there, for sure. No judgment. For several the Sex Pistols work best. Others the less loud but often acerbic Bob Dylan. The Clash. And one orchestral suggestion called “The Planets” by Gustav Holst. Mars is definitely pretty bombastic stuff.

My friend Julie says she always challenges her design and branding clients to “emphasize the side of themselves that they tend to keep hidden; that’s what’s most interesting to people about them.” So I will have to take that challenge myself, and try using music to explore this anger stuff a little further, if I ever do make another album… Or maybe a metal cover band? Who’s in?? For now I am going to compile that playlist.

Thanks again for all the comments and support.

In my head: A Singer-Songwriter’s Experience with Superior Semicircular Canal Dehiscence

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UPDATE 11/30/18 Thanks for all your comments and input. I RARELY maintain this blog or website. PLEASE EMAIL ME IF YOU POST A COMMENT SO I WILL KNOW TO LOGIN TO APPROVE IT:
barbarakessler@me.com

So it was one year ago this December that I found out.

I want to describe what it’s like. What it’s like to hear your own voice, amplified in your own head. Kind of like a bad monitor mix. Too much me. Like it’s time for a new sound guy. Pro-audio metaphors seem to work best.

Turns out, it’s not just neurosis, I actually AM “in my head too much.”
I actually DO have a kind of “hole in my head…”

More than 5 years ago, after getting over a monster cold – head stuffed up like it was going to explode, accompanied by all the usual symptoms, as well as my signature irritability (I now recognize that my irritability mostly CAUSES my ill health, not the other way around…but, I digress), I was left with that stuffed-head feeling. It was more like my left ear was still clogged, like it sometimes feels for a while after a plane flight, or after swimming. It was – well, irritating to say the least (hmmm…a permanent symptom).

I continued to have this feeling for years, saw several ENT specialists, was checked for earwax (none), tested for hearing loss (also none) and told “well, at least your ears are not ringing” (some comfort, but no relief). As I grew used to this clogged feeling, I realized there were other, less easy to describe sensations. I especially noticed these when singing. It sounded like my headphone monitors were out of whack; there was “too much me” in the mix. I could hear my voice in my head really loudly, and certain frequencies and tones created a sort of internal feedback, from a mild buzzing in my head to an extreme sort of jack-hammering and vibration against the inside of my skull, which may or may not be accompanied by dizziness. Performing certain vocal warm-ups while driving became almost dangerous.

My 2nd to last ENT (ear nose and throat Doc) was the most thorough up to that point, hearing out all my varied complaints and using a variety of low- and hi-tech diagnostic methods to check me for possible inner ear disturbances. He spun me around in circles blindfolded as if we were in a game of pin-the-tail-on-the-donkey, and then let me walk in a “straight” line as I veered off into the wall. He also strapped on the high-tech goggles and conducted videonystagmography, a series of tests to determine the cause of dizziness or balance disorders. All of this led to this medical conclusion – and I quote – “you may or may not have a problem in your inner ear, but either way, I cannot prevent your fate.” He actually repeated that line (in case my hearing WAS affected?) One of the most mystifying things I’d ever heard from a western medical doctor!

One day while scrolling through my Facebook news feed, I noticed a link shared by a fellow singer-songwriter (one that I am “friends” with on FB but actually have never met and don’t know at all – Tracy Grammer. Although I look forward to opening for her at The Uncommon Coffeehouse in Framingham this week, January 11 2013!) Her post was something like “This poor guy – I would hate this” and contained a link to an article describing the symptoms of something called “Superior Canal Dehiscence.” The condition caused, among other things, autophony (according to Wikipedia, “the unusually loud hearing of a person’s own voice, breathing or other self-generated sounds.” He could hear his eyeballs move, for instance. Well, doesn’t everybody?

Me, I also hear myself chewing. I have to cup my hand over my ear, old lady style, “eh?” when having conversation in a loud room or if I’m also eating. I hear my heart beat. When working out it can get pretty loud, and sometimes the whole scene in front of me jumps up down like a hand-held camera in documentary footage or reality TV.

I left a comment on the Facebook link, thankful for the help in finally identifying what was going on with me.

I’ve since read lots on this condition, but before I read this article on Facebook I had to wonder if I was going mad or if aliens had indeed surgically implanted something in my head.  So I called the office of the doctor who performed surgery on my vocal nodules in 1998 (Dr. Steven Zeitels, who recently operated on pop superstar Adele). It was time for a no-nonsense recommendation for the best medical opinion I could find. I got a referral to Dr. Jennifer Smullen, an otologist at Mass Eye and Ear. I told her, I think I know what’s wrong with me and can we just skip straight to the CT-scan to confirm it? The first thing she did was strike a giant tuning fork and stick it on my forehead. “Where do you hear this?” I pointed to my left ear. “Well, that tells me a lot.” She did skip fairly quickly to the scan (a cone beam, to minimize exposure and just examine that narrow area. Which of course left me paranoid that maybe I DID have a brain tumor somewhere that the limited range of the scan would not pick up… but I’m not dead yet, so I guess I’m ok). When she came back with the results she said, “Congratulations – you’re a genius. You diagnosed yourself.” Proud of myself I then thought, ‘oh shit. Now what?’

It turns out the only way to correct this is surgery (read: cut into scalp, lift brain, plug or patch hole, set brain back down, sew up hole in scalp…) Oh yeah, and there is a 1 in 10 risk of total hearing loss in that ear. Wait, what? When I research SCDS online and read about others’ experiences, I am frankly shocked by how many people casually talk about their upcoming surgery, or their completed surgery, and in some cases, resulting hearing loss. “Well at least I have my life back.” One of them said. All in all, I definitely prefer the “too much me” and occasional “feedback” and dizziness to losing hearing in that ear altogether.

But there was a time of grieving my gradual loss of normal hearing and permanent change in audio perception. I felt like my singing and recording careers, while I was just resuming them, could never be the same again (well, of course they couldn’t – this just made it more so, in a more concrete physical way.)

I have been trying to “wrap my head around” what it means to me to perceive in this way; trying to explain the sensation of what it’s like in my head. There is a clever if lo-fi youtube video called “Inside Todd’s Head” that Dr. Smullen told me about that attempts to capture some of the sensations of this condition. FYI, his eyeballs scrape way louder than mine do, but the heart beat is realistic.

My diagnosis coincided with my 50th year, the release of my first CD in more than 11 years, as well as some family issues that brought my own life-long experience with anxiety into sharp focus. These echoes inside my own head seem like a fitting physical manifestation of my experience with aging, mortality, and my coming to grips with fear and anxiety. They also seem a sort of ritual drumbeat calling to remind me of some notion of “my purpose…” something to do with my eternal urge to create and express and share some of what it’s like “to be me.” What it’s like to be here, now. What it’s like in my head.

But now I want to know, what’s it like in yours?

What you keep… and What to pack?

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Mixed Media Painting by Sue Pelletier

This past weekend I was invited to perform at the Art Is…You art retreat in Stamford, CT. Sue Pelletier, my wildly talented neighbor and friend, taught her mixed media “sweater sculptures” class. Sue is the artist who created the work for the CD cover for What You Keep. Sadly, I was only prepared to share my songs – I was unable to take any of the classes. This time.

The theme of the gathering where I performed was “being brave,” and I got to play my song Way To Be Brave for an audience who really got it. It was so inspiring to see so many women (and a few men!) “playing” bravely and exploring themselves through artwork. Can’t wait for next year!

This weekend I am hitting the road and heading to Florida for shows in the Tampa and Miami areas. Please check the “Tour” page for details. Excited and a bit nervous. Like riding a bike, I hope – the whole travel-play-travel-and-play-some-more thing…

Hope to see you out there soon,

bk

Leap Year

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Click here to play Leap Year

This song could have been called “Daddy’s Little Girl Had a Little Boy,” but the fact that this all happened on leap year made that the more relevant song title for my co-writer.

I’d written one other song in the past with Michael Erdos, and when his wife was about to give birth to their son, after just losing her Dad, Michael asked me to co-write and produce this song for her as a surprise gift. I know, right? How amazing. (You should hear the story of how he proposed – and that other song we wrote! If I can find it someday…)

The song still gets me a little weepy (although it has quite a breezy feel, as was his mission), especially when it gets to the very end: My daughter Emilia, only 9 at the time, sings the background vocals with her friend Anna.

Enjoy the extra day this month!

Official CD Release and New Website Launch!

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Today is a big day – I’m about to have a VIP CD Release celebration with the full band in our barn, right where the new album was recorded. We will be recording the show so stay tuned – there might be some new tracks available soon.

I’m also launching the new site, and will be adding new music, video and news over the coming weeks.

The PledgeMusic drive was a huge success – I really appreciate all the support! With all your help, we easily reached our goal of creating a budget for radio and publicity. Hope to see you out there in 2012.
-BK

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Barbara Kessler What You Keep CDNew Album: What You Keep

“After taking a decade-long hiatus from record-making and touring to focus on her family, she’s back with 10 gems wrapped in her exquisite voice and shining with the joy that comes from aging, acceptance and boatloads of gratitude.” Performing Songwriter

 

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