It’s great to be on the open road heading for home. The ear feels good. No more pain relief today and I manage fine. I sleep in a makeshift headband to ensure that I don’t catch my ear as I turn over in my sleep.
08/12/22
Day 8 post-surgery
An early start from Hannover in a trip that took us across the English Channel to Folkestone. It was another Sopranos multi-episode night. I inadvertently left the paracetamol in the car, making sleep a bit more uncomfortable than it needed to be. I’m still amazed that being uncomfortable is the worst of the process so far. There are sensations of clicks and pops in my left ear. Sometimes there’s a buzzing on that side as I talk, though I shouldn’t have much residual hearing now after the operation.
We make good progress and have time to spare to walk the prom in Dunkirk. We were amazed to read that there were multiple arrests of far-right extremists for planning a coup in Germany yesterday. At the restaurant the snacks on the table taste like Rancheros- smoky bacon flavour corn snacks that were part of the Saturday night routine growing up in the 80s: swimming lessons, burger & chips, baths, haircut from Mam and Saturday night TV with a bag of Rancheros each. She is long gone now, but she’d be pretty delighted with the past few days.
I have the headband back on, liberated from the first aid kit. It helps, reducing discomfort, keeping the dressing in place, and making sleep easier.
09/12/22
Day 9 post-surgery
Quick breakfast and away we go. The news is covering upcoming UK rail strikes. Thank God we drove. There’s enough anxiety in the process without adding additional sources that are out of your control. It is a beautiful crisp morning. Weak winter light worries the frost on rolling fields.
My gear acquisition syndrome (GAS) kicks in as we make our way across the UK. This condition primarily affects middle-aged musicians and it explains the number of stringed instruments hanging on the walls at home. There’s a yearning for a 5-string banjo and it looks like we’ll have an hour or two to spare. The GAS sufferer will make multiple excuses for buying new guitars or musical gear. My excuses are carefully cultivated before I raise the prospect of another purchase with my wife. They range from the simple (a treat after a shitty year) to the fantastical (neuroplasticity benefits of learning new finger-picking techniques and the frequency of the banjo being suited to the hearing range of the CI).
We skirt the banks of the Mersey to buy the banjo in Runcorn. I’m not sure if it’s a reward for being a good boy when getting the stitches out or a punishment for my family. We made it to the port with plenty of time to spare. We were not missing this boat and the long awaited reunion at home. We sent updates to the kids and we anticipate that they’ll bend bedtime to have a welcome party at the door when we land.
10/12/22
Day 10 post-surgery
It’s a joy to be back home after so long. The kids pick through everything to compile a complete list of all the gifts and sweets/chocolates. We present our latest kitchen gadget: a manual bread slicer, the best thing since….
This is dressing removal day. The scar feels impressive in the shower. It has knitted well and I have no significant pain. There is a low grade ache and a mixture of some numbness and sensitivity on my scalp around the implant. I wondered about the steps of the implantation process and why my scalp was sensitive. I ended up finding (trigger warning- graphic surgery) this report and associated video and it explained a lot.
11/12/22
Day 11 post-surgery
We watch It’s a Wonderful Life as the Christmas tree goes up. George Bailey’s deafness resonates this year. We watched it last year too, for the first time. It was strange developing single-sided deafness within a few days of watching it as his deafness affects the storyline at multiple points.
I thought about the new routine when I’m off work for a while to focus on recovery and the rehabilitation process and to dodge COVID in the run up to activation. It’s hard to take the time out. There is plenty of guilt, but I know that there will also be plenty of regrets if I don’t give the recovery/rehabilitation process the time and effort it requires. Instead of the daily walk to/from work, I found other sources of exercise. I wrote, played banjo or cooked again for the first time in ages. I learned how to relax after an anxiety-infused year.
I also thought about the process that enabled me to access treatment through the EU Treatment Abroad Scheme. I was always a fan of the European project and got a newfound appreciation for the real effect it can have on people’s lives and the need for little countries like Ireland to be able to access resources and specialisation that are not available locally.
13/12/22
Day 13 post-surgery
I’m back walking Dollymount Strand. Tomorrow will see the evenings start to get imperceptibly longer. A little stretch in the evening, which will evolve into a grand stretch in the evening over the coming weeks. I watched the Stenaline Ferry leaving Dublin Bay behind. The circle is complete.
There’s a strangeness to the first full day of recovery, out of hospital, out of Berlin, home, all the jobs done and all I need to do is recover. There’s a profound sense of freedom and lots of possibilities. The dog runs in circles around me. She loves the remote end of the beach. We see the seal colony at the end of Bull Island for the first time ever.
I thought about the neuroplasticity process that lies ahead. My brain/auditory cortex has obviously adjusted to the loss of hearing over the past year. It will now need to adjust to the new input. I’m going to spend a lot of time trying to undo the damage to whatever extent is feasible. I looked at a paper where they imaged the brains of people with unilateral hearing loss and a cochlear implant. It’s difficult to get my head around, but essentially, my brain will have to reverse the process that happened over the past year.
My other neuroplasticity project is learning to play bluegrass banjo. I had played guitar for nearly 30 years at that point. Now I would need to develop finger picking, something I had always neglected. The aim is to play blazing fast bluegrass goodness like this. It will take time.
14/12/22
Day 14 post-surgery
I visited the Audiologist to return my loaner hearing aid. It was incredibly positive. The team there, who have looked after me through this process, are delighted to hear about the progress and I go through all the details, forever fearful that I’m repeating myself or being a bore (you, dear reader, are not easily bored if you have made it this far).
We talked about this writing, the need to help people in a similar situation, and to raise awareness about SSNHL. It’s a shared frustration that too few people see the specialists that they need when they need them. We agree to push this message in whatever fora we can. The people that see patients presenting with sudden hearing loss should know that urgent ENT referral (within 24hrs) is required with sudden onset hearing loss. The public should know that time is hearing and that if they lose their hearing suddenly out of hours, there are a limited number of people that will be able to potentially save their hearing and they need to get to that person quickly. In my case, in Ireland, on Dec 26th 2021, there were probably 5 or 6 ENT residents on call in hospitals across the country that could have helped me. Unfortunately too many people, including those in the health system don’t know this. This will change.
We also talked about the tinnitus. She explained the potential effect of the physical placement of the electrode array on sound signalling and that it was possible that my tinnitus had changed. This gave me permission to accept improvements in the tinnitus at this stage.
An old friend calls and we have a restorative talk and I wander through this mad story with him. We had walked the prom at Salthill in Galway together while I was going through the initial treatment, while we both reckoned with the downstream impact of this whole thing and the musical impact- a long time shared passion from when we were just kids.
16/12/22
Day 16 post-surgery
It was a beautiful crisp winter’s morning with the long beach stretched out ahead. Ferries disappeared into the distance and Snowy ran in circles in delight. I’m probably her primary walker, although I’m not sure who is walking who, and her distance per week probably dropped a bit over the past few weeks. I took off the headphones to try and listen to the silence at the far end of the beach. The tinnitus has definitely diminished. It may be down to a number of things: my stress levels are a lot lower post-surgery or, as the audiologist suggested, this could be a manifestation of having the CI electrode array inserted. This presence of the electrode array may have caused some stimulation to go up to my auditory cortex and this could have dialled back the volume of the tinnitus. Whatever the explanation, I’m happy that I might be headed in the right direction and I left the headphones off for the rest of the walk.
I focussed on what I could hear: the clap of my boots on the frozen sand, the unilateral swipe of my jacket sleeve on my side, the distant conversation of two mothers walking their bundled babies, their chatter carrying in the still air, the sea gulls, the gently lapping waves, and the distant hum of the city. My own noisy silence was still there, but its wings were clipped. It had transformed into a lower volume white noise. There was a single high frequency present, but it was quieter than the previous discordant cacaphony. Was this the dawn of some form of hope and progress? Was I imagining it? What will activation day bring?
The wound was now completely closed over and looked very clean. At just over two weeks out from surgery the sense of fullness in my ear had decreased somewhat. If I lay on the implanted side, or opened my jaw wide, there was some mild discomfort. Nothing that I would describe as pain. There were sporadic twinges in my middle ear, presumably due to the post-surgical inflammation or muscle spasms within whatever structures have been affected. They have become more interspersed over the last week or so and only happen once or twice a day and are not usually that painful.
17/12/22
Day 17 post-surgery
We went to the Christmas traditional Irish music concert at our local school, putting the tinnitus to the test again. It didn’t fail and responded, but not in its former glory. What will it sound like at next year’s concert?
19/12/22
Day 19 post-surgery
My sleep has returned to normal, apart from a tendency to prefer the non-implanted side when I lie on my side. There is an awareness of the implant and as the inflammation is nearly completely resolved, I can vaguely feel the outline of the processor under my skin and the area where the surgeon went in through the mastoid bone behind my ear.
20/12/22
Day 20 post-surgery
Walking up the north quays in the watery winter light hot stepping it to be on time to meet my wife for lunch. A lunchtime date was unheard of in our normal world- but we left that nearly a year ago. I’ve spent some time this morning reading over all the writing to date in my dawn of the deaf file. There’s a huge task in turning it into something readable, but I need a project. I’m enjoying my new level of tinnitus. The Driving Home from Berlin With a CI playlist is on and Belle and Sebastian will not be outshone by reactive tinnitus. There’s a lot to be done while your head is still young.
26/12/22
The first anniversary of my hearing loss. The day is more positive than pessimistic. I was smothered with a head cold- something I would definitely prefer to avoid, but it’s impossible to keep away from all viruses and I’m relieved that this is 4 weeks post-op instead of 4 days. I’m still cautious about all the sneezing and the crazy runny nose. There are quite strong warnings about blowing your nose, holding in a sneeze or trying to pop your ears after the surgery. This can result in an air pocket around the implant and, very rarely, air around the brain (pneumocephalus), something I’d rather avoid.
My brain seems to be intact and I focus on the positives- a year where I didn’t go crazy, where I was surrounded by love and support, where work-life balance improved, where I successfully set a precedent around access to cochlear implants for people in my situation, time for focus on health including daily swimming and more time to make better healthier food, meeting many new friends with their own hearing issues and pathways to recovery and, finally, the prospect of being a step closer to recovery. I suppose “recovery” is open to interpretation. For me it doesn’t mean a return to my previously perfect hearing. It’s a damper on my tinnitus. It’s getting some spatial orientation again. It’s being able to say yes to things- restaurants/nights out and spend less time dodging viruses. Less effort to contain my crankiness when the kids are super loud. More gratitude for being able to get this chance.
I thought about the week ahead. The most likely route will be me hearing beeps and noises that will gradually turn into sound over a period of months as plasticity kicks in and my auditory cortex starts to catch the signals that have been mostly missing the past year. A less likely route would be the “Rockstar” activation where people get high levels of word recognition pretty much straight away. I need to read up on neuroplasticity in the context of cochlear implants. Before I do, I think about my mini neuroplasticity project- bluegrass banjo lessons on YouTube. While I’ve played guitar for about 30 years, I never did much finger picking but now my brain is getting comfortable with a demanding three finger picking technique that gets easier by the day. What seemed impossible at first improves subtly with practice.
In the coming months I need to go on the reverse journey of the brain reorganisation that happened when I developed single-sided deafness. The changes extend beyond the auditory pathway and areas of the brain responsible for dealing with auditory input. Vision is now an important part of me understanding the world around me. When someone is speaking, I’m combining the visual information to speech read with what I can hear. Watching TV also brings in visual input to understand what is being said, either through speech reading or subtitles. Some studies suggest that visual cues get processed in the auditory cortex in this situation- the brain won’t let capacity go to waste, so it processes visual information in the auditory areas. I won’t pretend to understand exactly what is going on in my brain over time, but I have some papers that I need to get stuck into and hopefully I’ll get my head around them and be able to outline them in a future post.
So, to summarise the two recovery posts, if you are having CI surgery, here are some pretty unstructured points around what to expect in the couple of weeks after surgery. It is important to follow the local recommendations provided by your CI clinic. It is also important to remember that everyone is unique and no two hearing histories, surgeries, or recovery processes will be the same:
Pain/Ear sensation
This will vary from person to person and depends on your surgery. Regular pain relief helped me. I got regular anti-inflammatories (no opioids) in the first couple of days post-op. I took simple analgesics (paracetamol/acetaminophen) for about a week. I also found that the headband helped. I felt fullness and some twinges of pain. There were times where there was a dull throb or tugging sensation. Talk to your anaesthetic provider about optimal pain control. I talked to them about my history of getting sick with opioids. I think they gave me a local nerve block, which left the affected area numb and pain free after the op. Stay on top of the pain!
Tinnitus
This will depend on your background. For me the tinnitus was exacerbated for a couple of days post-surgery, then it improved. It changed with positioning and was probably related to fluid leakage from the inner ear.
Nausea/Vertigo
Thankfully this did not affect me. I never had balance or other vestibular issues when I developed SSNHL.
Air pressure
Elevation changes did not seem to affect me. I obviously avoided flying, but lifts in tall buildings and the drop to and ascent from the Channel Tunnel did not cause any issues for me.
Do’s & Don’ts
This is not a comprehensive list- consult your own CI team. Here are some things that stood out for me:
-Lifting- avoid it for the duration recommended, easy to forget!
-Blowing nose- this can be a reflex action e.g. when having a spicy meal, be careful. Avoid anything that puts pressure on the inner ear for the duration recommended by your CI team
-Sneezing- no closed mouth sneezing; this can be tricky if you are somewhere that you’d like to avoid a big dirty sneeze, but you really want to avoid significant pressure on the inner ear.
-Sleep- have your head raised when sleeping. I slept on my back with a few pillows as side sleeping led to an uncomfortable pressure increase within the ear for me. A travel pillow may help (affected ear in the middle of the U shape), but I didn’t use this until a couple of weeks after the surgery.
-Coughs/colds- avoid if possible, it’s not pleasant coughing and sneezing soon after the surgery, if you can, avoid/minimise the risk of respiratory infections.
-You won’t be going to the barber for a while after- get a haircut before surgery.
-Follow the instructions on wound care to the letter, you do not want a wound infection around a CI (this can lead to protracted problems and can lead to revision surgeries). See if your centre has any recommendations on pre-surgery eradication of MRSA or other pre-op recommendations.
-Don’t be afraid to ask for help with childcare or anything that involves lifting- this surgery is a big deal and you only want to do it once if possible.
-Don’t stress if you can’t sleep- it will be temporary, have something good to watch/read on standby.
noisy silence 