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.
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Thanks for the blog. I am seeing a surgeon tomorrow in Boston. I have a 5mm hole in the right and a 1.8 in the left. My problem is the right-side causing heart-beat, high pitched ringing, can’t bear sounds, etc. Also get dizzy with some yoga and get very tired compared to before.
Do you have any updates on how you are feeling now? Can you compare the two different surgeries you had? Were you able to tolerate flying in a plane before you had the surgery (on your way there)?
I am a little hesitant to have this surgery but was planing for a trip to Seattle in June (KScope) and everyone is telling me to have it before I go.
Anyway, please keep us updated if you can.
Hi, Lisa. I haven’t been blogging about my ear issues very much, because unfortunately nothing has changed in the past couple months. A few random thoughts:
First, the size of the holes surprisingly don’t matter that much. Some people who have large dehiscences don’t have major symptoms, and some who have very small ones are debilitated by it.
As far as how I’m feeling now, I still have more autophony and tinnitus in the left ear than before the surgery. My surgeon’s attitude is “hang in there, it can take 6 months for the packing material to fully dissolve.” So I’m trying to keep a stiff upper lip, but it does still affect me quite a bit and I can’t do some of the things I’d like to do.
Comparing the two surgeries, the first one was more invasive, but I recovered good hearing much faster. The second was less invasive, and therefore has a lower chance of causing profound deafness, but it’s been almost 4 months now and things are still worse than before the surgery.
I was able to tolerate flying just fine, both before and after surgery.
I had a few things planned for the fall of 2013, and intentionally waited until they were all done before having the surgery. I wouldn’t want to travel until 2 or 3 months after surgery. So if you’re going to have it soon, then the Seattle trip should be fine. But if the soonest you can have surgery is May and you have a trip planned for June, I’d postpone one or the other.
Thanks so much for your rapid response!
And very sorry you are not better than before yet…
Will let you know if my doctor, Dr Daniel Lee, has any interesting information to impart.
Hi Todd – I am researching this problem SSCD – my daughter has finally been diagnosed after years of having the symptoms you describe. Problem is she lives in Austin, TX and we live in Colorado Springs. She is moving back to Denver in Dec. PLEASE tell me the name of the doctors that are trying to help you. She is having surgery in Austin Aug. 27th, my husband and I will be there for 2 weeks to help out. BUT your blogging on this sounds discouraging kind of and she will take much longer to recover. I need a dr here somewhere to help us out with this. THanks so much.
If your daughter hasn’t already joined, she should sign up for the SCDSsupport.org website. It’s the world’s largest forum of patients with SCDS/SSCD. There she’ll find tons of information on doctors, recovery tips, etc. You can sign up, too. One thing that’s there is a list of doctors who are experts in SCDS repair, listed by city and state (and foreign country in some cases). On the site are a lot of detailed journals, including my own. I have experiences with three ear surgeons in Denver, but none in Colorado Springs. But I know there is at least one expert there.
How are you feeling? My Doctor has a working theory that I have SCDS. The brain fog and fatigue are killing me the most. I have some slight dizziness, but I can function for the most part. I’m currently scheduled for a CT scan, but my VEMP results are consistent with SCDS. Surgery options don’t look great, that I can tell. Lot of people reporting worse symptoms after surgery, including deafness.
Well, unfortunately, my side-effects from the surgery are still in full effect. It’s been 11 months, and I still have bad autophony, ringing tinnitus, and pulsatile tinnitus. But on the plus side, I’m not dead, not paralyzed, and not deaf!