A familiar medical whodoneit story on SCDS in The Washington Post: http://wapo.st/1yThApn.
So, here’s a funny story.
A long time ago in a land far, far away, where it’s almost always sunny and 73 degrees, I once had an ear problem. Ten years ago at least. Lots of fullness, pulsatile tinnitus, constant infections. An ENT there came to believe I had Meniere’s Disease. So I went on a low sodium diet and took diuretics. Eventually, miraculously, it all went away and I forgot about it.
During my recent troubles, I failed to mention that episode to any of my doctors. It might have made a difference. Dr. Lee believes that Meniere’s Patients with SCDS are more susceptible to ear damage from surgery than those without it. He said he’s never had a patient lose hearing from a surgery, but I might have been his first. That’s very little consolation, but I wonder…. So make sure you discuss Meniere’s, or endolymphatic hydrops with your doc if you are considering any kind of SCDS repairs. It’s something to be aware of as they often go hand-in-hand — or canal to canal.
As for now, since some of my symptoms may be associated with Meniere’s, which happens frequently after significant ear trauma, I’m back to low sodium (in addition to low sugar, no gluten, no alcohol, and no caffeine), and am on a diuretic. I’m seriously peeing enough to solve the California drought issue. I lost three pounds over the weekend — which is good, because a year on prednisone can really pack on the weight.
There was good and bad news on my scans. The good news is that the tegmen repair looks solid, and that the hole on my “good” ear is very small. He does not believe that ear is affecting me. The bad news is, he can’t tell if my “repaired” ear is plugged as it should be. The wax and tissue used to cover the hole do not show up on CTs. So there’s a chance it didn’t hold. No way to know I guess without cracking my head open again. I’m following up on that.
My doc says it could take a couple of months to know whether this low-sodium plan helps resolve some of my current post-op symptoms. In the meantime, I’ll try to remember to put the seat back down.
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:
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.
Recently someone asked via this blog if I’ve heard of anyone suffering from SCDS beginning at birth or early childhood. This story was just posted on the Facebook SCDS Support Group page. I’m not sure it’s accurate, as this story suggests, to call it a “genetic disorder,” though.
So my posts are becoming less frequent, which you and I should both take as a sign of improvement. We went to the beach a week ago, and after a two-mile walk, reflecting on storm-driven seven-foot waves, I had a revelation.
Last July, we went to the beach as well, only my symptoms were just beginning. I could barely make my way across the boardwalk. The give of the sand and sway of the waves made me incredibly dizzy. I could never stay for long before going home and back to bed.
On this last trip, however, I spent all the time at the beach I wanted, descending long, twisty stairs to get there. I walked, then swam out to a sandbar several hundred yards from shore, and stood there for close to twenty minutes — rocked by waves, watching clouds speed over head, observing the shore line. I’d say that’s improvement. I did get tired, and needed to rest for a while every day, but the dizziness wasn’t too bad.
I’m writing well — or at least concentrating well — too, which is exciting. Cognitive Rehabilitation Therapy hasn’t improved me just yet, but it has helped me to recognize clear weaknesses that I can make better. Some of it, I’m told, is just being in my 40s and not working those parts of my brain for a long time. But some of it is also due to the SCDS and the resulting trauma. I might get specific on some of this stuff once my doc tells me I’m back to or above average.
Just as an aside — tylenol makes me dizzy. Alleve doesn’t. That was a welcome discovery as my head still hurts quite often, and the acetaminophen made things worse.
Running is still a bit too taxing on my vestibular system, which bums me out. It’s the bounce. I no longer have functioning vertical gyroscopes in my head, which makes the whole world bounce when I run. Maybe that can be trained away like it was for walking, but it is going to take much longer.
On the plus side, though, I have successfully resumed yoga! Six sessions in two weeks. Last night I was holding balance poses that other people were struggling to maintain. Granted, it’s a newbie class and I’m not exactly a newbie, having practiced steadily for three years in LA, but I found it encouraging.
I’m trying to teach myself to do something I’ve never been good at — live in the moment. I’ve always been focused on the future, and too often on the past, and have struggled with the present. While my present is going well, I’m trying to live fully within it. But, I’m finding that can be as much of a struggle as learning to physically balance again. It’s hard to override years of self-reinforced programming — teaching an old dog new tricks — but I’m trying.
Finally, I have made a new appointment with Dr. Hain in Chicago to have testing done on my left side to see where it is right now. I plan to then fly to Boston and have Dr. Lee exam my new scans. I want to know all of the options going forward, and monitor the size of the holes on the left. While I’m in Boston, whenever that happens, I hope to interview Dr. Lee as the first speaker in a short documentary I’m planning to produce on Superior Canal Dehiscence Syndrome.
That’s it. Thanks for reading. I always enjoy hearing from folks, so please feel free to comment.