Tag Archives: hearing loss

Happy New Year!

It’s been a few months since I’ve posted, and I’ve received a few requests for updates, so–

I’ve been taking one diuretic pill a day, and I think it’s helped to reduced pressure in my head. Perhaps I had some secondary endolymphatic hydrops going on in my repaired ear, and the pill helps me move that fluid out. I do still notice a very strong reaction to salt. Eat too much and I get a floaty head, feel pressurized, and can hear my heartbeat in my unrepaired ear. I think the diuretic helps keep that in check as well.

I had an MRI done with and without contrast to determine what my inner ear looks like on the repaired side, and if the patch is holding. So far, we can’t tell. I’m seeing Dr. Wiet again soon to get a new CT and on both sides, to check the surgery site, and also look at my other side as my unrepaired ear has been feeling a little wonky, too. At this point my only option on that side would be a round window occlusion, but everyone seems very reluctant to work on me given the chance that one mistake could leave me deaf. Round Window seems the safest route of them all, and I’d bet good money that someday I’ll be getting gowned up for that procedure.

I still have strong, constant tinnitus on the repaired side, as well as skull aches on that side and weirdly, a lot of tension and knotty soreness in my neck and lower back on that side, too. It has to be related, but no one can seem to tell me why yet. I’m going to visit a neuro soon. But for now, I travel with a bottle of Aleve, see a chiropractor twice a week, and get massages when I can. It’s a maintenence game at this point.

Fatigue and stress really exacerbate my symptoms, as do noisy, chaotic environments. But, that said, I’m finally ready to say that other than the hearing loss and skull/spine issues, and occasional brain fog/ dizziness, I am better than last year in terms of SCDS symptoms. I think a lot of that is adjustment and coping, some of it is probably the surgery.  Cognitive therapy has done a lot for my thinking, creativity and stamina, and frankly, so has just regular old therapy. Talking out the emotional aftermath of this process, and setting goals for the future, and working out the weak spots in my brain are really helpful, and I’d recommend it to anyone pre or post-op.

Another big boon to coping and recovery has been hearing aids. I have a set of Phonak Cros-Aids that pick up sound from my dead ear and transmit it to my good ear. They have restored a more normal range of hearing, and my brain has begun to actually figure out which side the sound is coming from, even though all of the sound goes into one ear. Pretty incredible. I find them particularly helpful in restaurants and meetings. They don’t help with the tinnitus, but to my surprise, they also don’t make loud noises any worse, which I obviously appreciate. They are super tiny, and only very rarely does anyone even notice that I’m wearing them.

Phonak Cros-Aids

I have a very big year ahead of me professionally and personally, and one of my resolutions is to not let my health situation be a constant topic of conversation. I’ll write the blog now and again, and share new information with friends and family as necessary, but I need to try to move on. I’ll keep actively seeking answers, opinions, and options to improve my quality of life, but I don’t want to keep defining myself with this thing anymore. I know I’ll have bad days whenever a storm front rolls in, or I’m too tired, or I fail to eat well, or some other random event scrambles my brains and balance. But I’m having some good days now, too, and my goal is to focus on those and stay in the goldilocks zone as often as possible.

Thanks for reading, and I hope 2015 brings health and happiness to you all.

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One Year Ago

Today is my birthday! (Please excuse the exclamation point.) A year ago today it was muggy and rainy as it is now, and I went for six mile run which I barely finished. I had worked my way up to eight again after years off from distance running. That was the day I began to realize something was wrong, but as you can read in My SCD Story, I had no idea what I was about to face. A year and one craniotomy later, I’m still facing it — but at least it has a name now, and I have a few new tools for fighting it.

For the past sixteen days I was in Germany. I travelled with my warrior wife and two small children to a time-zone seven hours away. I got my first ear infection in my repaired ear on day one of the trip, but armed with emergency steroids and antibiotics, it was sent packing fast. I had several good days to start, then relapsed into symptoms that felt a lot like the beginning of everything a year ago. It’s the left ear acting up, reminding me of those holes still in my head.

Despite the downturn, though, and the hearing loss and tinnitus, I have a lot to be grateful for only five months removed from surgery.

The fact that I made that trip  — two 18 hour travel days, hustling through airports, walking through big cities and across open country side — is pretty incredible to me.

I’m able to write on most days without serious brain fog, though cranking out a letter of recommendation yesterday with the jet lag was pretty rough. I have lots of projects cooking again which give me energy and hope. I find, for whatever reason, that pain relievers and swelling-reducers lessen the pressure that builds in my skull over time, as does sleep, so I’m hoping to find a healthy balance there. Can’t live on tylenol, I guess. I’m also beginning Cognitive Rehabilitation Therapy today, hoping to sharpen up and take the fight to memory loss and brain fog. Taking consistent breaks from the computer screen every 20 minutes helps, and forces me to waste less time. Avoiding stress, or coping with it well, helps, too.

I worked in my garden for two hours yesterday, which was necessary given that it had been neglected for over two weeks.  I can walk a couple of miles at a time. Occasionally I can jog if I keep my eyes on the ground and not on the bouncing horizon.  My legs get tired really fast, and bending up and down makes me dizzy, but avoiding those kinds of situations won’t make it better, and does not teach the brain to adapt, so I plough through it.

With consistent stretching, I think I’m learning to manage SCDS’ power to twist my body into painful knots. My neck, shoulders and left hip/leg are still problem areas, but I’m working on it with PT, VRT and Yoga. I stretch a lot, and spend a lot of time and money working for equilibrium these days, but I’m lucky to have these options and opportunities.

I’ve learned that sodium, caffeine, alcohol, and sugar make me feel worse. Add that to my gluten free diet from Celiac Disease, and the fun food options quickly become limited — but also more healthy in the long run.

My loving sister-in-law is an incredible audiologist, and she is going to be able to get me a great deal on cros hearing aids if I want them. I’m still trying to decide if I need them yet. I feel the loss at work more than at home, so I probably should. The neuromonics tinnitus therapy is still a bit out of our price range, and while it’s bothersome, I’m coping with that fairly well most days.

So, as I gain a year today, I’m hopeful but not content, inspired but not naive, and better but not well. I may never be all of what I was, but I can try to be the best at what I am now.

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Bendy after Brain Surgery

A long time ago in a land far, far away — Los Angeles — this guy here was a fairly serious yogi. I practiced for two years, pretty intensely, and saw a ton of benefit from it. Then we moved twice, I got sick, and it all fell away.

I went back today, not yet four months post-op. I was nervous about going to the studio. The sign on the studio door says “leave your ego and your shoes at the door.” As a competitive endurance athlete for much of my adult life, ego-checking was never my specialty. I’m ashamed to admit I enjoyed racing past the casual cyclist at 30 MPH, or chasing down every runner or slow biker ahead of me on the jogging trail. Now, when I go for a run/walk (I can run for 1 minute, then walk for 5), I’m the one getting buzzed — by other runners and in my head. Yoga isn’t supposed to be about any of that competitive stuff, though. It’s “meet yourself where you are.” I never really understood that philosophy until recently. Back in the day, I would be doing all I could do bend and twist as far as the ballet dancer next to me in class — which was stupid and wrong, but it’s who I was then.

My L.A. hey-day.

Today, my legs wobbled and are still shaking, my arms grew tired ridiculously fast, but I held. I found peace and calm. I stayed within myself and did not push. I felt opened up and for the most part, balanced. I’m hoping this will be an answer for me in terms of calming nerves, remaining centered, and rebuilding strength, balance, flexibility, and composure — all things this ordeal has cost me.

A friend of mine recently pointed me to a story on ESPN about athletes and soldiers who have suffered brain injuries seeking cognitive rehabilitation training.  I’ve found someone in my town who does that, and will begin working with her next week. All in all, I do everything that is asked of me mentally, but I don’t feel as sharp as I once was creatively or critically. I’m hoping this training will help me gain back lost ground and also stave off any brain fog that could arrive when and if my other ear gets worse. I’ll keep you updated.

People continue to find the blog and write to me. I wish you all well and enjoy the fellowship, even if it is centered on this shitty problem.  I fight bitterness sometimes. I’m happy whenever someone comes through a SCDS surgery okay, but there’s always this pathetic twinge of “why me” when it comes to my hearing loss and raging tinnitus. I see Dr. Wiet again in a few weeks, and hope to begin investigating hearing aids, or tinnitus relief of some kind. I got an ear infection in my good ear last week and was left virtually deaf. It was scary, but has since cleared. I feel like a time bomb of potential silence. Almost like I should hear everything I can possibly hear just in case I have to go through this again and lose it all.

But for now, I’m meeting myself where I am and enjoying the day I have in front of me. I hope you are, too.

 

If she can do it, so can I.

I’ve been so focused on functionality, I’ve yet to totally deal with things emotionally since my surgery and its aftermath. As a result, it doesn’t take much to make me cry these days. I had no hope avoiding tears watching the story of blind pole-vaulter Charlotte Brown, and yet, all she does is give me hope: http://es.pn/SIlna4

Blind pole-vaulter in Texas.

Track and Field

Hello all,

When I first joined support groups on Facebook, I’d panic at every side effect or bad outcome I read about, when it came to Superior Canal Dehiscence surgery. A wise woman in one of those groups told me to remember that all of the folks with good outcomes had moved on with their lives, and didn’t have time to be checking the boards all f the time. That made sense to me, but only about two weeks ago.

I’ve been back at work for three weeks and feel like I’m tuning in much better than before, and getting stronger. I’m not to where I was this time last year before my symptoms began, but I’m getting through my days fairly well now, and my work days on campus are quite active and stimulating — physically and mentally.  I must also say, that for reasons unrelated to SCDS, my last two weeks have been emotionally stressful, and my response to that stress is drastically improved from the worst days of my symptoms.

The best news is this. I had to teach my daughter to ride her bike, which necessitated running along side her as she rode for brief stretches. Then, trying to keep up with her as she went around the block. If you read My SCDS story, you’ll note that I was a runner before this all went down. In fact, a month before I became severely knocked out, I finished a 5K in about 27 minutes — my best time ever. Well, that jogging with my daughter, led me to think I could run again, and I’ve started back without too many problems. I run one minute and walk three, and can cover two miles that way in under thirty minutes. My fastest mile is 13:48. I have five minutes to shave off, but I’m thrilled to be running again.

I mostly stare at the ground, but try to challenge myself and raise my head to hold the horizon every several seconds, and the bounce seems to be improving. My legs are sore, naturally, but not just from the exercise. My lower back, neck, and outside leg muscles continue to be severely stressed by my new balance situation, so I’m at the Chiropractor and message therapist at least once a week.

The dizziness still comes, but only slightly, and it’s very manageable. I’m starting to believe it’s from my unrepaired side. Two milligrams of Valium each night before bed help with that. My balance is good. I’m no late-life gymnast, but I can walk a balance beam front to back, then do it backwards, then turn and repeat without touching the floor (most of the time).

Noisy, stimulating environments still wear me out, though. And my hearing has not improved in my repaired ear. I may never know why this happened, when so many people report better hearing post-op. Right now, I’m trying to get the most out of every day and enjoy this good period. Because with the other side unrepaired, and potentially unable to be repaired due to the possibility of complete deafness,  I can’t be sure how long it will last.

Here’s a picture of me attempting a (very short) long jump for my two kids:

 

Since I’ve Been Gone

Hey everyone.

So it’s been a while. Two weeks, in fact. I needed to take a break, I think, from writing the blog.

I had two goals when I started this — 1) to give curious, concerned friends and family one place to go to get information on my situation, and 2) to document my story for others who may be suffering from Superior Canal Dehiscence Syndrome, and considering what to do about it.

It’s hard to not feel like I’m complaining all the time. There’s a fine line between “documenting” and hosting a pity party in situations like this, and I felt like I was trending toward bitching.

I’ve realized in the past two weeks that I’m in for a roller coaster ride. Just as I was getting used to the tinnitus and severe hearing loss in my right ear, and thinking “I’m not thrilled about it, but I can deal with this,” I started to relapse into the same old symptoms. Swimmy-headedness (the medical term, not to be confused with dizziness, is “giddiness”), brain fog, fatigue, and pretty severe muscle soreness on the stabilizing muscles of my left leg. Essentially, the piriformis, hamstring, IT-Band, calf and ankle. The reason for this, I’m told, is that my left side is doing lots of work to compensation for the balance problems on my surgically repaired side — especially when I do balance exercises, which is almost constantly. So I’m laying off that for a while and going to a chiropractor, while seeking extra PT for the muscle issues.

The cognitive issues come and go. It’s hard to pin down what causes them, but they only just began about ten days ago. Is it the weather? Sinus trouble? Is it the dehiscence in my left ear? Is it the healing/damage from the surgery? Does the craniosacral therapy help or hurt? I can’t tell. I don’t know. It sucks and it’s scary. My greatest fear was to go through this traumatic surgery, suffer some kind of significant side-effect, and then learn I’m not even better than I was before. Right now, that’s seems to be the situation as best I can tell, but I’m trying to fight through it and live as normally as possible in hopes that with time it will all improve. Folks tell me the recovery can take up to a year. Folks tell me to be patient. That’s a recurring theme.

I can walk up to 2.5 miles now in about 36 minutes, I’m heading back to work on Tuesday, and while I get really tired really fast, I’m hanging in there most days. Laying down for twenty minutes helps reset and calm things down, so there will be a pillow in my office going forward. I continue to see my fantastic vestibular therapist, who is now working with me to steady my vision while walking — so my field of view doesn’t bounce quite as much. It’s interesting work.

So, that’s where I am. A bit of good news creatively and professionally have lifted my spirits, as has the success of my Kentucky Wildcats in the NCAA tournament. I’m going to try to get back to writing here more, and also buckling into the SCDS documentary I’ve started.

Thanks for reading!

Vestibular Therapy Update, and Post-Op Obsessions

I have four sessions left on my first post-op PT prescription (we’re asking for more), so we did a little testing today. I’m up several points on the rating scale from where I began one week after surgery. As of today, I can:

  • Stand on one foot, both sides, for 60 seconds with eyes open
  • Stand pointed (one foot directly in front of the other, heel to toe) for 60 seconds with eyes open and closed
  • My gait has returned to normal, and I don’t wobble looking from left to right or from up to down as I stride
  • I don’t need handrails on stairs
  • I can walk over a mile
  • BUT, I cannot stand either foot with eyes closed for more than a second or two. I tip over immediately.

All in all, not bad in the balance department.

Early mornings, just after waking up, I tend to get swimmy helping the kids get ready for school. Doing computer work for more than an hour gives me a thumping headache. My skull is suddenly very sore these past two days, too, which effects my sleep — as does the tinnitus. Blah, blah, blah. 

The biggest issue is that I’m a perfectionist. Always have been. I know I’m going to have to find a way to get over this, but the hearing issue bugs me a lot psychologically. It’s not just the fact that I can’t hear out of that ear, and that what I do hear is annoying, but it’s the knowledge that something is wrong, broken, not right — that drives me crazy. It forces me to question everything. My decision to do the surgery. My choice of surgeon. The type of procedure. My recovery protocol. The smallest little thing like accidentally picking up my son after I cam home, or that time I burped and it hurt my head, or digging out the storm drains with a hoe. All of it.  Did I do it? Could I have made a better call? Why me? 

Self-pity ain’t cool. And it’s stupid to obsess over these things, I know, when much of my recovery is going well. Nothing can be done about it. But right now, for me, the obsessing is unavoidable. I’m hoping getting back to work in two weeks will push all of this back some and give me a little peace. 

I actively seek out perspective now. Like this story, about a 12 year-old boy from New Zealand who is slowly going blind and wanted to see the Celtics play while he still could.