30/11/22
After admission I’m wheeled on my bed to Theatre. I get a tour of the ceilings of the Spezialchirurgische Kliniken on the way. After Theatre check in and multiple identity and surgical site checks the team of Anästhesistin or Narkoseärztin look after me. They need to medicate, oxygenate and intubate me prior to the pretty astonishing surgery.
Catastrophising is a side effect of coming through a traumatic process. I breathe in deeply while the anaesthetic team oxygenate me prior to intubation. I know that they do this to buy time if they can’t get the tube in after the anaesthesia takes hold. That way they’ll have extra time before the brain gets damaged by low oxygen levels. Get a grip, I tell myself. I use the 5 minutes for some mindfulness. I cycle through my children’s names as I breathe through the oxygenation time, then feel guilty about excluding my wife, so she gets added in. Then the dog, I forgot poor Snowy, my constant companion over the past year. She gets included. I get a one minute warning that the anaesthetic will take hold. I feel like a child on Christmas eve, knowing/hoping that falling asleep is all that lies between you and your presents and the joy of Christmas day. The lights go out.
I wake and see the number above my bay in the recovery room. The first feeling is an overwhelming wave of exhilaration. I’m not sure if it’s the drugs or the relief of getting the surgery done. Right up until the last minute I anticipated someone saying, “Sorry- you shouldn’t be here…..”. I can move everything and there’s no pain. I feel clear-headed. There’s none of the butterflies in the stomach, drowsiness and tingling sensation of post-operative opioids and thankfully none of the nausea. I have a very kind and caring recovery nurse who looks after me initially before going on to talk about her holidays in Ireland and how much she loves the country.
My face feels fine and there are no problems from the general “How am I doing?” check. If I move, there’s the slightest sense of pain and fullness. There is roaring tinnitus, but it’s different now to what it was like before. This is to be expected after a surgeon has been poking around in my inner ear. It’s easy to tolerate given my months of practice and the fact that I’m on a pathway that could lead to resolution of the tinnitus distress. I lay there, having sips of water while three huge waves of relief washed over me:
-relief that nearly a year of severe hearing loss and tinnitus may be drawing to a close
-relief that the journey to Berlin from the West of Ireland has been successful
-relief of the last 24 hours, obviously an anxious time while awaiting the COVID test result, and that the isolation of the last few weeks worked.
My wife arrives in the ward shortly after I get back. It’s emotional and we are both overjoyed at getting to this stage. We catch up and I do some voice notes for this blog to tell her the story of the past few days and record it for future transcription and polishing. It’s not long before it’s time to mobilise and after gingerly getting out of bed and popping on flip flops, I feel fine. The flip flops got lots of outings going into the Atlantic to swim to look after my head and to get some degree of engagement with people while I was isolating over the last few weeks. It feels like the flip flops punctuate the story as I get back into them again in a hospital in Berlin with my wife by my side.
We talked about what the future holds in the short, medium and long term. Sometimes your planning has to come to a stop as the future is uncertain. Now we plan again. In the short term we’ll take it easy, explore Berlin, plan, recuperate, have a good time and take on the epic journey back home, together this time. In the medium term I’ll get used to the new situation, get the activation done and crack on with the rehabilitation process, getting closely acquainted with Berlin Airport, and organising special trips to Berlin for each of the kids and a weekend with my Dad. In the long term, with the initial rehabilitation process complete, we look forward to taking on things that seemed harder to conquer in the past year- family projects, personal projects, getting back to work and getting back to full capacity. There is also a new advocacy role. I need to share my experience and advocate for people with hearing loss. People in my situation should be able to access surgery in Ireland. I am very grateful to Health Service Executive and the Treatment Abroad Scheme. I am delighted to be in this situation, but it is not accessible to everyone. I could walk to the Irish National CI centre in 20 minutes. It’s important that they get all the resources they need to support everyone who needs a CI.
There are chats with my roomates in my broken Leaving Cert German. My wife would love an autocaption to generate the subtitles of what I was actually saying as the conversation meandered through increasingly esoteric topics.
The surgeon arrives and confidently tells me everything went great. Rising onto the balls of his feet to punctuate each reassurance. A complete success. The electrode was placed exactly where they wanted it and tested successfully during the surgery. The facial nerve tested fine too. They’ve organised a CT scan for tomorrow. He checks my facial nerve- everything looks fine, or at least as symmetrical as it was when I came in. I feel like a Star Wars character as he places a large illuminated set of goggles to check my eyes. I need to ensure that I don’t have a gammy eye as well as a gammy ear.
Thirty minutes later another doctor comes in to tell me that they performed my surgery. I’m confused. They were more reserved with less bouncing. They’re not describing my surgery though. They slowly register that my German comprehension was not quite what it should be and it clicks that they are at the wrong bed.
It reminds me of another case of mistaken identity. I’m in some Consultant rooms in Dublin. The kind where multiple specialities share the same waiting room. I’m there to see a urologist for benign reasons. When I arrive, there’s already someone in the waiting room, leg jumping in anticipation of being called into his appointment. When the urologist comes in and calls Brian, he hops up and I don’t stop him as I’m pretty early for my appointment. About 10 minutes later, the urologist came back in, red-faced. “Brian Cleary?”, he asks quietly and with the careful diction of someone calling out the nuclear codes. I go into the consultation room and he sits down with a gentle sigh. It turns out that other-Brian was waiting to see a cardiologist and I imagine he got quite the surprise after the initial pleasantries when the urologist began his assessment.
There is a delightful new flavour of tinnitus after the surgery. It changes as I move and I imagine it’s down to the surgery poking a hole into my cochlea and the associated fluid leakage. It might be worth getting a sense of what the surgery entails if you’re going down this route. This is the video that I watched before the surgery. This is the video I watched afterwards (content warning- graphic surgery- some people will be more comfortable watching this after the surgery is done!).
It’s late and we (all three occupants of the ward) are awake on our phones. It’s hard to sleep following surgery to the head. One episode of the Sopranos and I’ll be due another dose of anti-inflammatory. It feels like someone is tugging my ear, but there’s no real pain yet.
Very little sleep forthcoming. The Sopranos led to Seinfeld, Twitter and eventually a scientific article for work- I was wide awake and it’s an area that I’ve done research in, so why not?
01/12/22
Day 1 post-surgery
We have breakfast together and the Berlin Builder who had his CI the day before me is ready to go home – feeling great. I have very little pain and have switched to regular paracetamol. Another surgeon comes to check up on me. They were quite happy with the procedure. The Twitter algorithm suggested my account to them when I tweeted about going to Berlin for a CI.
So now I wait. The first full day without anything to do. Escaping the whirlwind of the last year, and past few days. I didn’t mind getting very little sleep last night- there’s plenty of time for it today! I look out at the remnants of formal gardens that could probably be traced back to the earliest days of the university hospital campus. The famous medic Rudolph Virchow campaigned for an additional hospital for the ever-expanding city. It was named after him, as he died before it was completed from complications following a leg fracture sustained jumping from a tram.
I’m starting to feel my ear and the left side of my head again. The great pain relief may have been down to some form of nerve block from the superstar anaesthetists who looked after me? I take regular simple analgesics and don’t really have any pain. Right now there’s a sense of itchiness along the edge of my ear. Earlier there was a slight tugging or dragging feeling on my earlobe. One of the team came and saw me today- they’re happy that I’ve no dizziness and the CT scan result shows optimal placement. It’s a moment of realisation looking at the implant outline on the screen, the electrode coiling into my cochlea. The elation of yesterday has been dialled down, but I’m still much less anxious than before the surgery.
We walk around the campus as delicate flakes of snow begin to fall. We own the coming days now that we know that I got lucky on the vertigo and vomiting fronts.
02/12/22
Day 2 post-surgery
I finally get a nice few hours of sleep. I’m still awake at 5:30am, following a late night of fumbling with the settings for this blog. I feel good and excited about what’s coming down the tracks. I’m watching McCartney 3,2,1 in the background and might be imagining it, but the tinnitus seems more manageable. My head feels fine. There’s something approaching the after-effects of getting a bang on the ear from a football or snowball. I keep going with regular paracetamol- it’s what I’ve been telling postop patients for years and I’ll take my own advice. I’ll get another dose of a long-acting antibiotic IV this morning. Extended antimicrobial prophylaxis after surgery is frowned upon, but I‘ve had a foreign body implanted and the consequences of a wound infection would be pretty grim- I’ve seen the pictures. There is also an increased risk of meningitis with cochlear implants. I’ve received pneumococcal vaccines in the run-up to prevent some common forms of meningitis
The doctor talks me through the CT images and changes my dressing. I’m amazed by the rotating CT image of my head and the way the implant will stay there, possibly forever. She takes a photo of the incision and it looks great. I feel like I’m moving up in the world Karate-style graduating from a mustard to a blue headband. I’m a bit more at ease seeing the wound and knowing that the bandage change wasn’t the gore-fest I had envisioned with blood-stained walls, fainting and swabs sticking to a nasty wound.
We meet outside the hospital. Rudolph Virchow Krankenhaus emblazoned on the archway above us. It is a beautiful crisp morning as we slowly walk through the streets of Wedding. This was part of the French sector after World War II. Some of the buildings were along the course of the Berlin Wall. Nearby, people frantically escaped East Berlin out of ground floor windows of buildings that straddled the dividing line to get across as the wall went up in August 1961.
I feel great. Much better than expected after the surgery. There’s another wave of elation as I look back on everything that brought us to this stage of the process. There’s a way to go yet, but we’ll savour this time and what we’ve achieved over the next few days before we tackle the return journey, assuming everything goes according to plan.
We wander around and there’s a sense of complete contentment. Significant national pride wells up as Johnny Logan comes on the radio in the cafe. All the young Berliners working on their MacBooks gently nod along as Johnny belts through the key change of Hold Me Now. The tinnitus has changed. It’s still there constantly, but now it has more of a TV white noise quality with some higher frequencies added. If it stays like this forever, I’ll be fine. I can have severe tinnitus and not suffer with it now that I’ve pursued all treatment options and who knows what will come in the next few months as I get input going to my auditory cortex again.
The Berliners are very reserved and there’s no staring or any engagement at all with the big blue headband and padding over my ear. If I was at home, I imagine it would be a topic of conversation: were you in the wars? What are you after doing to yourself, Van Gough?
03/12/22
Day 3 post-surgery
It’s -2 degrees out and there’s snow expected. It would be great if the kids were here with us, but I’ll take the slow pace and (noisy) silence all the same.
My brother in law’s brother is a Chef and has lived in Berlin for about 5 years. He gives us a long list of restaurants and other touristy things. They’re all on a map here.
I wonder what it will be like wearing a CI processor for the rest of my life. If people don’t notice/acknowledge the massive headband/bandage, I think they’ll skip over the CI.
04/12/22
Day 4 post-surgery
The recommendation for multiple pillows and general discomfort torpedo my sleep again. After getting to sleep ok, I wind up wide awake by about 2am with seemingly no prospect of getting back to sleep. The post-surgery advice varies online, but there are a few centres recommending elevating your head for a couple of weeks after surgery. One suggestion from a CI recipient on one of the vendors’ websites mentions using a travel pillow on its side, supporting your head without touching the surgical site. This doesn’t work for me- I feel a pressure buildup if my head isn’t elevated on multiple pillows and will be fine with a gradual return to normal sleep.
We plan a day out walking around Berlin and have a hit list of recommendations to check off. The list sits in the same app that all of the CI preparations were planned in. Looking back now- it was a mammoth undertaking, but definitely worth it when there’s very little to lose and the postoperative course has been so straightforward in my case. I still take regular paracetamol to keep inner ear discomfort at bay, but I’m very happy with the recovery process. The only pain that I experience is an intermittent sharp sensation in the ear a few times a day. It seems like a small price to pay considering the surgical process involved.
05/12/22
Day 5 post-surgery
My adult supervisor has to work so I’ve a chunk of the day to kill. I try some music. Belle and Sebastian tell me “There’s a lot to be done while your head is still young.” My sentiment exactly and the reason for not accepting a hearing aid that did very little for me and advice to ignore the tinnitus and it will go away. I have things to do and I’m not losing years to this thing.
I go to the spectacular Berlin Story Bunker. A World War II bunker where the rise and fall of the Nazis is documented in incredible detail. The grimness of everything that happened when something malignant was allowed to take hold. I was bowled over by contemporaneous newspaper articles from the New York Times clearly foreseeing the dangers ahead from the US journalist Cyril Brown in 1922 and another from a different journalist in 1924 suggesting that Hitler was “Tamed By Prison” and will “retire to private life and return to Austria”. The futile resistance of the White Rose movement and the ghetto uprising were very poignant.
My tinnitus seems better the last couple of days. Am I imagining it? It was loud post op and seemed related to position/movement. Now I can go a while without any awareness. It’s still there, but….
06/12/22
Day 6 post-surgery
Lots more walking to offset all the German calories. An audio tour through the Old National Gallery kills some of the afternoon. I see the aftermath of a Climate Change protest with red paint spattered on the walls and floors around the space formerly occupied by Toulouse Lautrec’s The Clown. Poor Lautrec, ridiculed in life for his short stature, a passionate defender of Van Gough and Oscar Wilde, he walked around Paris with this tippling stick filled with Absinthe and now he gets selected for this protest. Maybe it’s a compliment.
My ear feels good. Fleeting pains. I feel some popping/crackling while eating, but nothing major to report. The skin on my scalp seems numb around the implant which feels strange under my fingers.
07/12/22
Day 7 post-surgery
We’re up early and packed. My run of a couple of nights’ good sleep is broken and I’m watching stuff on my phone again in the middle of the night (Hitler’s Last Year). We get the apartment organised and my poor wife lugs everything down to the car- I’m still on a lifting restriction. I get to my appointment early and tap out a few words while also compiling my questions for the surgeon:
I’ve never met the Professor who runs the unit. Her colleague did my surgery. If I do see her, I need to thank her for not deleting that initial email that set this whole process in motion. Charité is a place of joy for me. I’ll be getting an “I ❤️ Berlin” T-shirt on the next trip.
The consultation is pretty short. I’m shorn of the headband that has compressed my head since the day of discharge. The wound looks really good and the stitches are snipped. The friendly resident goes through my list of questions and then it’s time to hit the road. I leave with reassurance- your ear is fine, you can’t get the wound wet for a couple of days, your ear drum is fine- swimming is possible when you’re ready, don’t lift anything crazy heavy, don’t worry about displacing the implant, it’s not going anywhere. It’s going to be ok. See you in January for activation. We stop by Domberger Brot-Werk, tipped as the best bakery in Berlin by our Chef tour guide. Then we’re on the road again with a custom playlist to celebrate the start of our trip home.
noisy silence 