Category Archives: Ears

Posts about Todd’s ears and ear surgeries.

recovery at nearly two months after surgery

My inner ear / skull base surgery was February 27, which means it’s been almost two months now! I wrote an update about a month ago, so here’s the latest news.

I went back to driving a car and haven’t had any problems with it.

A couple weeks ago I first I noticed that when I walk on concrete now, I hear the sound of my shoes hitting the sidewalk more than the sound of the impact going up my legs and skeleton and into my inner ear through my skull. This is a very nice feeling that I’m sure everyone reading this takes for granted, but it’s something that hasn’t been the case for me in about three or four years.

The sound of my voice in my left ear is actually quieter now than in my right ear. It hasn’t been that way for about six years, since before my very first surgery. That was my biggest complaint and the primary reason for wanting to have surgery. I’ve noticed that it has gotten quieter in the left ear even in just the past month.

I do have increased ringing that sounds like a high pitched whine in my left ear. I’ve always had that in both ears, and then the right ear got worse after it was operated on. Now the left ear is worse since getting operated on. But I don’t know if it’s really worse than before surgery, or if it’s just that the other noises are quieter so I notice this more.

The incision scar still feels weird, and the area around it is still a little sensitive, but nothing I’m concerned about.

I rode my bike a couple times and had no problems

I’ve been careful not to strain when bending over, but have noticed that sometimes when I bend at the waist my head doesn’t feel good. So I try not to do that.

I’m continuing to take one 500 mg extended release Diamox before bed each night. It seems like I’ve had headaches more often than usual lately, but about the same number before and after surgery; it’s just more than I’m used to from a year ago. I usually blame this on dehydration and then try to drink more water.

the nicest compliment

In case you didn’t already know this about me, I administer a web forum called SCDSsupport.org, which is the world’s largest online group for sufferers of SCDS. Because of this, I get a lot of emails from people about the disease — some who have it, some who want to join the (private) forum to talk about it with others, and so on.

Most days it’s just tech support, helping people reset their passwords, deleting duplicate posts when someone hits the Send button 20 times, etc. And like all tech support it’s usually very thankless.

But one SCDS patient who was in particularly bad shape physically and emotionally found me a few months ago and I’ve been giving him advice through the process of choosing a doctor, getting surgery, etc. I’m not going to mention his name, but I do want to share the nicest “thank you” note I think I’ve ever received. You get a real sense of how desperate this person was. I have a day job where I’m pretty certain after 25 years I’m never going to get a standing ovation, but at least I can get one in other parts of my life.

Here’s the email:

Thank you so much Todd.

Without your help I wouldn’t have known what to do. You kept me from losing my mind. I was on the verge of breaking down & locking down & giving up. I’m glad I was able to find Dr. _____ from your referral. I to did not want to lose my balance because I have another 30 years to work before I can retire. If I make it that long. Lol, this was the only thing I wanted to try. I don’t care to much for round window reinforcement but there has got to be a good reason why it’s done in combination with resurfacing. Other than that I’m very happy. I still have some healing to do so I hope some more hearing comes back & I get less crackle & pop from the ear. I believe it’s the packing gel dissolving. I barely hear the pulse in my head on left side. No more drinking my self to sleep day after day.

God bless you Todd and thank you so much. You changed my life I am very humbled and grateful.

more post-surgery healing progress

I won’t bore you with all the little details, but it’s now March 15 and my post-surgery experience has been pretty good. My head is healing up well. I wish I could say every symptom suddenly went away, but that’s not how these things work. However, some symptoms have partially gone away or gotten better. It’ll take 1 to 6 months to know for sure what my “new normal” will be.

I was supposed to go back to work today, and feel up to it. But due to some delays in the paperwork, my doctor’s approval for me to return to work is stuck somewhere in the system. So I have time to goof off one more day, write blog articles, etc.

Here’s a photo I took this morning of the side of my head. You can compare it to the other photos I took to see how things are progressing. The wound area is looking better, and my hair is growing back to partially obscure it.

March 15, 2015

 

left ear surgery 3-15-2015

 

 

Here’s a head shot from March 5 in our hotel in Covington, LA:

March 5, 2015

recovering from surgery

Today is Monday, March 2. My surgery on Friday went pretty well, from what I can tell. Friday I spent in a room in the ICU, and then they transferred me to a post-surgery hospital room for Saturday night. Sunday, they discharged me and Beth brought me back to our hotel in Covington. This morning, we took the post-surgical dressings off, and now I have the first of a few days at the hotel resting and healing.

Dr. Gianoli told me that once he got into my head, things weren’t quite like he originally thought. There was not a portion of the brain punching through the skull and impinging on my malleus bone. Instead, my malleus was so high up that was touching the brain. Minor difference, I guess, but relevant. It wasn’t the brain that was “off sides”; it was the middle ear.

Anyhow, he built up a little dome over the malleus to give the bones room to do their job and for the brain to rest on. And while he was in there, he also did some extra patching of the original left side superior canal repair from November 2013.

Current symptoms: The sound of my voice is very loud in the left ear, and there is loud ringing there, and I can hear my pulse pretty loud. These are all expected, though, and are normal for the first days or weeks after this surgery. So I’m not at all concerned. I guess I’m used to the idea that we won’t really know for weeks or months later whether the surgery was a full success.

Here’s a little selfie gallery of photos over the past few days.

image

in the ICU, enjoying my oxygen and apple sauce

image

still in the ICU, but no more oxygen, and I got a PJ’s latte which was delicious

image

in my surgery unit room, no longer hooked to EKG, oxygen, or the automatic blood pressure machine

image

back at the hotel, in street clothes

image

under the Princess Leia bandage, surgeon’s autograph near earlobe

image

my MHC beanie covers up the staples in my head well enough so I don’t scare small children

Once more into the breach (in my skull)

Next week I’m scheduled for another major head surgery. I’ve been through this twice before, and I think the third one is going to be similar. My neurotologist says I have what’s called an encephalocele. That means that part of my brain is oozing out of the brain cavity. In my case, it’s drooping down through a hole into my middle ear, and impinging on the malleus bone, just like in the drawing below. The hole isn’t supposed to be there, but in my case, for whatever reason, the bone that supports the brain is very thin. That’s why I had superior semicircular canal dehiscence (SCD) on both sides.

Encephalocele Schematic

The encephalocele would explain the symptoms I’ve had for the past 14 months since the SCD repair on the left side in November 2013. Since then, the sound of my own voice in my ear has been achingly loud. I’ve been able to hear my pulse almost non-stop. I can hear my eyeballs move left and right, can hear my eyelid muscles close my eyes, and can hear every little internal noise my body makes — stomach acid moving around, knees popping, fluids moving through my skull, etc.

I had an encephalocele before, on the right side. My surgeon noticed it when he was operating on me to repair the SCD on that side. And so he carefully pulled my brain up out of the hole it was falling into, and repaired the hole with bone cement. Unfortunately, he also changed his surgical procedure for SCDS, and the new approach didn’t allow him to notice and fix the encephalocele. So now he’s going back in to fix that.

Dr. Gianoli

Surgery will be in Covington, Louisiana. That’s not the first place that comes to mind when you think of cities with a reputation for advanced medicine, but that’s where Dr. Gianoli lives and practices. So people visit him from all over the world for these type of surgeries. From what I can tell, he has more experience doing these operations than any other surgeon on Earth right now, so I’m in good hands.

It’s a major surgery, so recovery will be a little intense at first, but it should be easier than the first two operations I had. I’ll most likely spend two nights in the hospital (one in ICU and one in a regular room), and then a few more days of bed rest in a hotel. A week after surgery we’ll fly back to Denver, where I’ll spend at least one more week resting and recovering at home. I hope to only need to take off about two and a half weeks of work. But I won’t push it, since healing properly is a higher priority than work. For the previous two surgeries, I took off a month each.

There’s a web forum called SCDSsupport.org where I’ll be journaling my progress in more detail, for the benefit of other patients who are faced with the same issues. But for those of you who are interested in the gory medical details, here’s a good web page I found that explains what’s going on, along with some pictures.

Surgery is planned for Friday February 27, 2015. I’d love to hear from you during my recovery over the following two weeks.

Oh, and if you want to read about my skull’s whole hole history, here are all the blog articles I’ve written about my ears over the years.

another spinal tap!

I had my fifth spinal tap (aka “lumbar puncture”) today. This is part of the recovery process from my SCDS repair surgery back in November, four months ago. The LP will allow us to see two things. First, what’s my cerebrospinal fluid (CSF) pressure currently, since I’ve been taking 2 Diamox 250 mg pills a day. Second, what impact – if any – does lowering my pressure have on my ongoing autophony symptoms.

Three of the times I had a lumbar puncture, I was partially or fully sedated, and so those were good experiences. The last time I had one, I was not sedated at all and it was terrible. The anesthesiologist was poking and prodding around and hit several nerves on the way in. It was painful, and I had terrible lightning shocks shooting down my legs. So I was nervous when I learned they plan to do this fifth LP without sedation.

However, they were using a procedure I had read about but never had, where the radiologist guides the needle into just the right spot by using an x-ray machine.

Well, I don’t know whether it was just good luck, a more talented puncturer, or the x-ray guidance procedure, but this time was 180 degrees different from last time. It was anti-climactic, with less actual pain than going to the dentist for a routine cleaning and exam.

Lessons for if I ever had to do this again:

  • Make sure the doctor doing the procedure knows in advance how much fluid to remove
  • Get sedation if possible, and if not get the x-ray guidance technique

Oh, so you want to hear the results? My opening pressure was 22 (cm H2O). They removed 16.5 ml of fluid. And my closing pressure was 15.5.

two months post-surgery

Yesterday I visited my ear surgeon for a follow-up appointment, roughly two months after my SCDS surgery. A quick run-down of my current symptoms:

  • Still have ringing and other noises (heartbeat, eye muscles, etc.) in the operated ear
  • Sound of my voice is still very loud (autophony) which keeps me away from loud places because it’s so uncomfortable
  • No dizziness or balance problems

I had a hearing test, which showed that my hearing in the left (operated) ear is OK, but that I have conductive hearing loss there. Some of that is due to the tube in my eardrum, which Dr. Gianoli removed. He said it looked like it was clogged, so it probably hasn’t been letting air through in a while. Now I have a small hole in my eardrum, so I still can’t go swimming or get water in that ear until the eardrum is healed up.

After looking everything over, the doc thinks the autophony and the rest of the conducting hearing loss are due to the remaining protective packing gel inside my ear. He packed it very thoroughly during surgery to protect everything during healing, and it typically takes months for all that gel to dissolve and be absorbed. In one case, he said, it took a patient a full year. I hope it’s not a year of this, but he seemed to think there’s a good chance my hearing will be good within six months.

I’m anxious to be autophony-free, of course, especially since my hearing was back to tip top shape after just one month after the surgery on my right side. But I need to continue to be patient, since this new surgical approach takes longer to bounce back from. It’s tough, though. I don’t want to be Silent Bob, but it’s painful to talk any louder than a librarian.

Even though I’ve been doing many “normal activities” already, he officially cleared me, with a couple exceptions. I’m not supposed to do anything that causes strain. He specifically mentioned no yoga or pilates. I assume he also meant either no weight lifting or only very light weight lifting (don’t tell him I did weights last week). And of course, no water in the ear until the eardrum heals. Other than those things, it’s all back to normal.

six weeks later

This past Thursday marked the six week anniversary of my ear surgery. I haven’t written about my recovery in a while, so for those who are interested in my progress, here you go.

My hearing in the left ear has continued to slowly get better. I’m definitely in the “gradual slow progress” stage of my recovery now. But this past week, I hit a new milestone: I was able to hold a phone conversation with the phone up to my left ear instead of my right. And the person I was talking to has a fairly strong accent, so the fact I understood almost every word was a good sign.

Now for the bad: I still have ringing, though sometimes it’s quiet enough I don’t think about it. And I still have very loud autophony – way worse than before surgery. My voice is uncomfortably loud, chewing crunchy foods is super noisy, and I sometimes have a hard time sleeping due to hearing my pulse in that ear.

The doctor did say it would take months for everything to come together right, so I’m still holding out hope. But I don’t feel like my autophony has improved in the past month, and that’s pretty discouraging. It’s still difficult to carry on a conversation in a crowded place.

My balance has been just fine, and I’ve been driving a lot. I’ve gone to the rec center twice (only) in the past six weeks, but haven’t done anything that would cause “strain”. And riding the exercise bike at the lowest level is pretty darn boring.

As a result of my very limited exercise for six weeks, I’ve gained back the weight I lost after surgery. And I’m in terrible physical condition right now. I start breathing heavily after going up just two flights of stairs. It may be tough to get back even to the so-so shape I was in a few months ago, but I can’t wait to start.

I continue to shower with a greasy (Vaseline-covered) cotton ball in my left ear, to keep the water out. I can’t wait for that to end, but it won’t be until late January, after the tube in my eardrum comes out and the hole heals up. My incision scar is still sensitive in parts, but numb in others.

My left ear still sticks out more than my right, and may do so forever at this point. I’m looking forward to getting my hair cut, because I haven’t had a trim for almost two months at this point, and I’m pretty scruffy around the edges. I’m a little nervous about the barber being gentle enough to not hurt the sensitive parts of the side of my head, but it should be OK if I warn them about it.

Supposedly now that my six week “limited activity” period is over, I can go back a normal routine, including:

  • sexual activity
  • bending at the waist
  • lifting more than 10 pounds

But rather than dreaming up some scenario to do all those at once, I think it’s probably best to ease back into normal life gradually.

—-

Wanna see all the posts about my ears, so you can read the details play-by-play from the beginning of my journey with superior semicircular canal dehiscence syndrome? If so, click here (it’s show you all the ear-related posts in reverse order): http://toddbradley.com/?cat=6

yet more normalcy

The last update on my recovery from SCDS surgery was 8 days ago. Well, the past week has continued the long road to normalcy. Here’s the latest news.

I’m still on medical leave from my job at Oracle, but have been cleared by my surgeon to return to work on Monday, given a few restrictions. His orders are to be on “light duty” – don’t do anything that’ll cause physical strain, don’t lift more than 10 pounds, start off at 4 hour days working up to 8 hour days by December 21, and telecommute whenever possible. I had kinda hoped to start back to work this week so I could get holiday pay for Thanksgiving and the day after, but didn’t feel good enough soon enough.

A few days ago I drove a car for the first time since surgery. Beth drove us to the shopping mall, and I drove around the parking lot at first. Then, since I seemed to be doing OK, I went out on the side streets, and then bigger streets until eventually I proved to both of us that I’m recovered enough to drive safely. I even drove us home on treacherous Highway 36, which is high speed, bumpy, curvy, and under non-stop construction.

Another “every day activity” I was able to do is that I finished editing a skating video that I shot back in the summer. That took several hours of concentration and computer work. I was slower than I’d normally be, mainly because my hearing problems meant I had to get a videographer friend with good hearing to listen to it and tell me what I needed to fix.

Next milestone: We went to see a movie last night in the theater. This was the first time since before surgery. It was “Hunger Games: Catching Fire” which is about 2.5 hours long plus at least 30 minutes of commercials and trailers and other crap at the beginning. The trailers were very loud, and made my one good ear hurt. I was afraid the movie itself was going to be that loud, in which case I probably would’ve had to walk out. But fortunately it wasn’t, so I was able to make it through the whole film. It’s still not the best movie watching experience, since my hearing isn’t so hot right now, but I didn’t get vertigo from watching all the action on the big screen.

Lastly, a “partially normal” milestone: Thanksgiving! I wasn’t up to traveling to have Thanksgiving dinner with either my cousin or my parents, but we wanted to get out and do something. So we invited a couple friends to go to a casual neighborhood restaurant that offered turkey dinner. It was too loud, of course, but I did my best to be part of the conversations, and once we were finished I was able to quickly get back home where it was quiet. The resulting nap was much more appreciated than most.

Each morning before I shower I still have to coat a cotton ball in Vaseline and stick it in my ear to keep water from getting in. And washing my head is kinda slow because the incision is still sensitive. So getting ready in the morning takes longer than normal, but not too bad.

Thanks for reading this far! Should I post a photo of how my incision scar looks now? Most (but not all) of the scab is gone now and I don’t feel like such a freak being in public without a hat to cover up my Frankenstein head.

home, one week later

I’ve been back in Boulder for a week now, recovering from my ear surgery two weeks ago. I can’t believe it’s been two weeks already, but I’ve made lots of progress.

My hearing is starting to come back a little bit in the left ear. I’d say it’s at about 10% right now, but a week ago it was at 0%. I can’ t understand conversations, but I can hear people’s voices in that ear when they’re talking at normal levels. The sounds are all kinda quiet and “squeaky” though. Even stranger, the audio is interpreted by my brain as being slightly delayed and out of pitch compared to the right ear. That makes listening to music a bit less than delightful, and someone when Beth’s talking to me I turn so my good (right) ear is pointed at her so I don’t have as much of this double signal problem.

Speaking of hearing, it seems like the extreme loudness of my voice buzzing in my ear (autophony) has gotten better over the past week or so. Maybe I’m just getting used to it, but I do think it’s decreasing a bit. Also, the ringing sound has gotten quieter than it was right after surgery. That said, it’s still there 24/7. Last night I was feeling irrationally grumpy about it; after a full day of this loud non-stop ringing, I just wish it would stop.

The surgical wound continues to heal up. A week ago it started scabbing over, and Beth has been putting antibiotic ointment on it once a day, which is supposed to reduce the scarring I’ll ultimately have. Since then, some of the bits of scab have come off, which I guess is nice.

I’ve also finished nearly all of the post-surgery medicine. The first couple days after surgery I think I was taking about 7 or 8 different things. Over the past week that dropped to 3 and then to 1 and now to 0. I don’t even have to have antibiotic drops in my ears anymore. The only special thing right now is that I have to put a vaseline-covered cotton ball in my left ear while I’m taking a shower, to prevent water from getting in the ear canal.

My dizziness has been pretty low, which is nice. I’ve also been able to get out most days for a walk. It’s funny. I’ll walk for a while feeling just fine and then all of a sudden I’ll just get really, really tired. I guess my brain is working harder than I realize, reprogramming how it handles balance input. And then at some point, it’s just all out of energy. That has happened to me walking to the park, putting dishes away from the dishwasher, and walking at a nearby birding area.

This is the main reason I don’t feel like I’m ready to return to work yet. I don’t want to get most of the way through the work day, and then suddenly have my brain run out of steam. I wouldn’t feel safe driving in that state, and wouldn’t be comfortable taking the bus, and wouldn’t want to wait for someone (Beth, almost certainly) to come pick me up from the office and take me home.

So I’m definitely not going back to work next week, which is kinda too bad because I had imagined resuming work the day before Thanksgiving so I could get paid for Thanksgiving and the day after. Instead, I’ll continue to be on unpaid medical leave. Maybe I’ll be more ready to return the week after.

—-

By the way, thanks for reading. If any of this has been helpful or amusing, please leave me a note in the comments section.

If you haven’t read the rest of the story of my ear surgery and recovery but you want to, I’ve categorized all the blog posts with the category “Ears” so you can go right here to find them all. Look at the dates, because if you go back in time too far, you’ll find posts related to my first ear surgery over four years ago.

http://toddbradley.com/?cat=6