Tag Archives: SCDS

A Visit to Dr. Daniel Lee

Hi everyone.

This week I flew to Boston to visit with Dr. Lee and discuss my situation. I was his last appointment of the day, but he spent a lot of time with me, and we had a very thorough conversation.

So….the audiogram and VEMP tests were negative on the left (unrepaired) side. We know from films that there are holes there, but Dr. Lee seriously doubts my symptoms are coming from the left given the results of these tests. My hearing is quite acute in the good ear. I do suffer from very mild autophony and hyperacussis, but they do not impede me much day to day.

Without a read on my new CTs yet, and not having fully reviewed my post-op notes, he suspects my remaining symptoms are coming from the repaired side. Why? Don’t know yet. Maybe the repair did not take. One other hypothesis is Hydrops. I had a bout of that many years ago when a doctor in L.A. suspected meniere’s disease. I corrected it with diuretics and a low sodium diet for several months, and then it just went away. Dr. Lee thinks this may work again, but we have no way of knowing. So I’m going to give that a shot beginning very soon. I’ve been taking a very low dose of valium, and he wants me weaned off that, to give my brain a chance to really adjust to the information — however screwed up — it’s receiving from my vestibular system.

With regard to the left side, it’s good news that I’m not showing symptoms there, but it kinda broke my little heart when he told me that it would have to be an extremely dire situation for him to operate on my unrepaired side, for fear of making me fully deaf. He said round window occlusion might be an option, but he would prefer to do nothing.  And he did confirm that in general, dehiscences do grow and progress over time. So…yay!

I’ll await his further opinions while back in Chicago, but in the mean time, I’m trying to stay positive, be grateful that I remain able to do most things I want to do, continue to stay as fit and productive as I can be, and research every possible option for holding this thing at bay.

I went for a walk to MIT and back the night before my appointment:

MIT at Sunset

MIT at Sunset

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The Power of Cognitive Rehabilitation

A friend forwarded this article on a man who had a devastating brain injury and has recovered tremendously due to cognitive rehabilitation therapy, something I’m doing right now, too. I think it would be particularly useful to Superior Canal Dehiscence patients with brain fog and disorientation symptoms.

http://http://bit.ly/1mbRgjh

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.

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!