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.

Meniere’s Disease and SCDS — Pee it Out

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.

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

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