Day 7 post-op

Day 7 post-op

My HUGE Frankenstein incision

My bandage finally came off. It was barely hanging on so I had hubby call the surgeon’s office. Guess what!?!? They’re closed until next week!! No joke… And their message said “if this is an emergency, hang up and call 911”. Umm, well… I’m not bleeding profusely, but according to the literature you gave me, this bandage is supposed to stay on for another week. So… What do I do?? Tried calling the local ENT, but he wasn’t in today. At least they had someone to speak to. I really can’t believe that the whole frigging CI program/office is closed for a week and not even a week has passed since they did 2 CI surgeries! Not even a nurse to answer questions or give advice. Unbelievable! Now, don’t get me wrong, I’m very grateful they got me in for surgery when they did, but wouldn’t it have been prudent to leave someone in charge in case either of their 2 patients needed something? 
We went ahead and pulled the bandage off and I got a good look at my Frankenstein line. It’s way bigger than I expected. Probably about 3 inches long and I’m guessing around 25 stitches. That being said, it looked pretty good. My biggest concern is my hair, it’s long and thick and frankly, very dirty since it hasn’t been washed since before surgery. So in trying to get my hair away from the sutures, my hair caught and pulled on one and it started bleeding. So what went from, “hey, this is cool”, quickly escalated to, “crap, what do we do?!?” Not like it was bleeding profusely, but it was dripping down my neck and after 20 min, hadn’t stopped. 

Now, in between finding out that the office was closed and actually removing the bandage, I took my dilemma to a CI users group on Facebook to ask advice. I figured these guys have all been there so they’d be the ones to ask. The majority all said that there was no way that bandage should still be on there. So of course that prompted me to take it off. I know these guys aren’t Drs or medical professionals, but they have all been through this journey too. Had it not started bleeding again, I probably would have just left it, but then, that would have been easy. 

Asked hubby if he could take me into emerg to see if they could cleanse it and bandage it. Got there and decided quickly that sitting in a room full of people with colds and flu would not be a good idea and anyway, the wait would have been 4-5 hrs for a stupid bandaid! Tried a local clinic, but they don’t accept walk-ins. Finally headed to the pharmacy to buy a bandage and do it ourselves. Amazing, these guys actually cared and helped us pick out what we needed for the job! Headed home with our bag full of goodies. I also shot off an email to my audi in hopes that she might have a suggestion or at least confirm whether or not the thing needed to be bandaged. 

Hubby did his best to carefully cleanse the incision and apply the bandage, but my hair proved to be a major pain. Got the thing semi-covered and mostly sticking so it’ll have to do. Still bleeding a bit after an hour of driving around town, so I’m glad we got the bandages. After all that excitement, I crashed in my lovely recliner and slept for 3 hours! I’m not sure how some people go back to work a week after their surgery. I’m still wiped out. 

In the time that I slept, the audi responded and suggested making an appointment with the same ENT that we tried. Unfortunately, he’ll be in the city tomorrow and not our tiny, rural clinic so that means driving an hour there and then an hour back. Once again, all for a stupid bandaid! I’d rather do that though than end up with an infection so looks like that’s my schedule for tomorrow. Yay…

First week is in the books and 3 more to go until activation. 20 days… Woo hoo!!

Day 6 post-op

Day 6 post-op

Last night was the best night sleep I’ve had in a long time. I only woke up twice between midnight & 10am. So I am very thankful for a good night’s sleep. I’m still able to manage on just 1 Tylenol 3 every 4-6 hours and I’m trying to push the time between pills a little further apart. I do still have swelling and a numb feeling around the back/side/top of my head. Guess I’m a real numbskull. Ha!

The bandage over the incision is driving me insane. It’s like a concrete block loosely taped to the side of my head. Most of the adhesive has come free too, so it’s not even really protecting the incision anymore anyway. I think I’ll have hubby call the Dr in the morning to see if we can remove it. I would much rather have a clean bandage put over it anyway. Not sure how a bloody, crusty bandage could be viewed as sanitary after a week! Apparently it’s supposed to stay on until my sutures are removed next week! Gross…

Nasty, crusty bandage.

I want to wash my hair so badly, but it’s imperative that I don’t get the incision area wet. With the amount of hair that I have and the way my head was shaved, I’m not sure how to go about that to ensure nothing gets wet that shouldn’t. So I guess I’ll wait. I gave myself a cornstarch shampoo yesterday. Google says it’s as good as those expensive dry shampoos. I’ve never used either before, so I wouldn’t know. I guess it feels a bit better, but nothing close to a real lather, rinse, repeat. I’m happy to say that things are definitely improving and while I will probably need a few more days of rest, I’m getting there. Every day is one day closer to breaking my silence. So thankful that I have this opportunity. Yes, it hasn’t been a pleasant week, but I would go through it all again to have the ability to hear. 21 days!!

Day 5 post-op

Day 5 post-op

Well, I wish I could say my plumbing system kick start of yesterday was enough to have business running as usual, but alas, this is not the case. My system is still extremely sluggish despite the addition of a laxative to my diet. If things aren’t moving by tomorrow, I may not be able to avoid another replay of yesterday’s events. Oh joy, something to look forward to. 

I cut my pain meds dosage in half today. I’m tolerating it but I think I spent more time sleeping today than before so maybe that helped me cope. There’s still a fair amount of pain happening and dizziness. I was hoping the dizziness would dissipate with the lower dosage of pain pills, no improvement there as of yet. One thing is for certain, I want to rip the bandage off the side of my head. It is SOO itchy! I wish I could get rid of this crusty one and put a nice new one on, but apparently, I’m stuck with this for another week and a half (until I get the stitches removed). I wonder what the incision looks like and how many stitches I have. 

So, let’s talk tinnitus. For those of you who don’t know, tinnitus is just the medical term for “ringing in the ears” – but it’s not limited to a ringing sound. It is often described as chirping, humming, whooshing, etc and affects as many as 1 in 5 people. It’s not a condition in and of itself but more often a symptom of an underlying condition such as hearing loss. The best way I’ve heard it described is like a phantom limb syndrome – when accompanied with hearing loss, it’s like the brain’s way of coping with the lack of sound input. Its a very loud “silent” struggle as no one can hear what’s happening inside your head so they can’t see your suffering. Like one of the many invisible illnesses so many people battle. 

I’ve had tinnitus in the form of chirping crickets as long as I can remember. But as long as I wore my hearing aids and there were other sounds around, I hardly noticed them. Back in November of last year, I developed more of a humming noise along with my crickets. It would always be there, but most of the time I was able to keep myself distracted enough that it wasn’t a huge bother. It progressively got worse over the months to the point where I likened it to a lawnmower constantly running in my head. 

I have a constant lawnmower running in my head.

There is no treatment or cure for tinnitus, only coping methods. The most effective method is masking (using other sounds to cancel or drown out the tinnitus). Unfortunately, the sudden and complete loss of my hearing in June left me with no mode to combat my tinnitus. I found myself suddenly in a screaming loud silence. No longer able to hear the world around me, yet tormented relentlessly by the lawnmower in my brain. 

The first few weeks were, by far, the hardest. There was no escape from the buzzing, it would wake me in the middle of the night and it would prevent sleep from coming. The sleepless nights caused greater stress, which in turn caused more tinnitus. So it was a viscous circle. There were so many times I wanted to put my head through a brick wall; I would scream at the top of my lungs for my brain to stop. I shed countless tears. I would give anything for just 5 minutes of true silence. I kept hoping and praying that my brain would finally give up and accept that sound no longer exists in my world but, as my dad always said, I am a stubborn one. With every day that passed I gradually gave up the hope that my tinnitus would go away and instead clung to the promise of sound that my CI would bring. 

In leading up to the surgery date, I knew that one of 3 things would happen, post surgery. My tinnitus could get better; it could stay the same; or it could get worse. Now in my mind, I wasn’t sure how it could get much worse than it was and even if it didn’t improve, I figure I’m looking at a month more of dealing with it before I could start masking with other sounds. Well, now that the surgery is over, I can say that it definitely CAN get worse and it did get worse initially. The first two days the sound was deafening at times (I know, bad choice of words). However, it has since settled down quite a bit. I get moments of crazy sounds like bird chirping, rumbling, and twice I was sure I heard voices (FREAKY!!). But overall, I’m no worse for the wear. I’m still holding out for activation and finding other sounds to listen to aside from my lawnmower. I do, however, wonder if I’ll ever know the true sound of silence. 

22 days…

Day 4 post-op

Day 4 post-op

I think I almost died… The first thing the hospital should do when they kick you out is give you a laxative. Then this could have all been avoided. After 4 days of eating lots of fiber (like they told me) and drinking tons of fluids, I still hadn’t had a “movement”. Got hubby to pick me up a suppository as I was starting to feel really bloated and uncomfortable last night and the fiber pills didn’t seem to be doing much. 

Gentle my a$$!!!

He brought home the #1 selling brand. “For gentle, predictable fast relief of occasional constipation.” Just what I wanted. Was all ready to get things moving so I shoved it up there and waited a few minutes. I figured I should head towards the bathroom (since it’s such a long trek and I wasn’t sure how quickly things would get started). Got there and then thought it might be a good idea to have my phone, you know, in case I got bored, ha! So I hobbled back to the bedroom to grab it. 

By the time I made it back to the throne room, a hot wave had begun to spread across my body. Good Lord, God Almighty, then the spasms started. I broke out in a cold sweat, and my head started spinning. I was losing it. Consciousness started slipping away and the only thing I could think of is don’t take a header off the toilet and break your implant! I was grasping to the hand rails for dear life. Wave after wave hit me as 5 days of fiber finally started to make its way through my system. 

I wasn’t sure how much longer I would be able to stay upright so I grabbed for my phone and texted my daughter to come to my rescue. Then since she’s not always quick to answer texts from me, I called her too and just kept saying, please come help me in the bathroom. She came and I somehow managed to relay that I needed her to gather blankets and pillows. My vision was fading, I wasn’t sure I could hold on much longer. She brought them back and laid out a spot on the floor for me where I promptly collapsed on to them, only to drag myself up moments later for the next spasm. I am not lying, I saw my life flash before my eyes. After an hour of floor-to-throne moments, I think I made it through the worst of it. Now I get to deal with the residual “ring of fire” yay. Stupid hospital! But hey, at least I can laugh about it now!

Aside from my near death experience, today has been a much better day! Last night I managed a stretch of 2 hours sleep instead of the usual 45min – 1hr. What a difference that makes. The pain is also far more tolerable today. This could be due to switching to Tylenol with Codene, but I’m seriously hoping it’s just the natural healing progression and I’ll be off the pain meds completely very soon. The transition between the two pain drugs was not a pleasant experience though, so I’m very glad that’s behind me. 

The hair that was shaved around my ear is growing back rapidly and I’m finding my head incredibly itchy now. Partly the new hair growth, partly the bandage, and partly the healing, I’m sure. I just have to keep myself distracted or I may find myself scratching my ear right off. Still having a bit of dizziness when I’m up walking around so I try to push myself a little bit more. I know sitting on my butt for a week won’t help me get back to my usual self. 

Now that things are moving the way they are supposed to and I am feeling a bit more energetic, I keep reminding myself that this is all very temporary. The recovery stage will soon be behind me and I’ll be hearing once again. This is what I eagerly await. 23 days & counting…

Day 3 post-op

Day 3 post-op

Well, they say things usually get worse before they get better, and that seems to be the case with me today. The pain meds I was taking were driving me insane with itchiness so at 4am, I decided I wouldn’t take it anymore. Not a smart move on my part. The itchiness subsided, but having no other good pain meds, I was left with extra strength Tylenol. I was prescribed 650 mg but my pills were 500 mg so this left me a bit shy on my dosage. Hubby was finally able to get a new prescription for Tylenol 3s but only got it around 3:30pm. This left me for most of the day with a sub dosage of extra strength Tylenol to keep the pain at bay. I don’t think I really appreciated the intricacies of pain management. Everyone said stay on top of it for the first few days, even if it doesn’t feel that bad. Now I get it. Once the pain grabs a foothold, it doesn’t like to let go. I’m borderline going out of my mind right now, either the pain or maybe the withdrawal from the other pills, but it’s not a pleasant experience. I’m very impatiently waiting for the two Tylenol 3s to take effect. Hoping I’m able to sleep tonight though. 

With the increased pain, I noticed a corresponding decrease in my attitude. Funny how that works. I found myself getting aggravated at the slightest things. The way my socks felt on my feet, the pressure of the chair on the back of my head. A squirminess that won’t let me sit still. Probably effects of coming off those other drugs. Still my hubby is amazing and answers my every whim. When I couldn’t bear to sit in the recliner any longer, he brought his behemoth rocker for me to lounge in. This is sort of a running joke here because it’s his favorite chair and I always tease him that it’s not so great. Well, that issue is now settled and buried in the back 40. His chair is way better! It may have found a permanent residence in our living room now. 

I managed a brief shower this morning. While I couldn’t wash my hair (oh, how I’d love to) I was able to wash the yucky hospital feeling away. That felt good. I just have another 11 days to go before I can wash my hair. Yikes, that’s really not going to be pretty. The drainage has stopped so at least I don’t have to deal with that. However, I can tell there’s fluid in my ear. When I tip my head slightly towards my implanted ear, it feels like the fluid is going to make its way through my sinuses and come out my eye. Gross, I know, but I never said I would sugar coat my journey for you. The other really great unpleasantry? Constipation and bloating. Been eating tons of fiber, but my system is shut down tighter than Alcatraz. Maybe that’s got something to do with my irritability. Hubby bought me some fiber pills so we’ll see if that gets the show on the road. 

I do try to keep in good spirits through all this. I know that this is all temporary. Like labour, there’s pain and discomfort at the beginning but once you hold that child in your arms, the pain just melts away and is quickly forgotten. I think my activation will be very much like welcoming a little bundle of joy (without the dirty diapers & sleepless nights)! 24 days to activation!

My “oh so pretty” bandage…
Day 2 Post-Op

Day 2 Post-Op

I’m happy to say that the discharge has pretty much stopped, but the pain is still pretty bad. More ear pain now than neck pain. Actually, it feels very much like I have an ear infection – the pressure and pain is quite similar. I’m still taking pain pills every 4 hours and finding the pain starts hitting around the 3rd hour. I keep hoping I’ll be able to push it to 6 hours, but no go yet. 

Last night was a long night again – awakened at least every hour. I’d look at the clock hoping that more than an hour had passed since I last checked only to see the minutes slowly ticking by. Strange how time seems so much slower in the night when you can’t sleep. Today my face/neck/head seem to be quite swollen. I think I’m going to have a doozy of a bruise on my neck & ear. I’m still itchy all over! Way worse than yesterday. That’s part of the reason I had difficulty sleeping last night, I think. It’s like I have an army of little ants crawling all over my body. Google says that this is apparently a reaction to the anesthetic. Popped a Benadryl to see if that helps with the itchiness, but forgot how much I dislike taking that stuff. Makes me feel like I’m on a cheap trip. Foggy brain all over again. Gonna have to decide which is easier to live with, the itchiness or the foggy brain. 

My whole mouth feels weird, almost numb. Still have the metallic taste so everything tastes the same. It’s even difficult to distinguish textures and temperatures. Been sticking with soft foods; soups, apple sauce, pudding, jello, etc. Made the mistake of trying to eat wheat thins, but the crunching was very painful. I also can’t open my mouth very far, so it’s little bites for the next while. 

I find myself imagining what it’s going to be like when I’m finally activated. I know things won’t sound the way I remember and that I will have to work hard to relearn how to hear, but there is so much promise there, it’s hard not to get carried away. I wonder if the implant will eventually sound better than my hearing aids ever did. One can hope! I will say it’s still creepy when I think of the wires stuck in my head! Creepy, yet miraculous! I’m so blessed to have this opportunity to hear again. 💕

My Journey to Sound

My Journey to Sound

Tomorrow is the big day. Tomorrow I become the Bionic woman, I join the CIborg collective, I get my first (hopefully not the only) cochlear implant. I won’t lie; I’m as nervous as H – E – double hockey sticks. I don’t like the idea of surgery to begin with, but the thought of having wires installed in my head is, frankly, kind of creepy. That being said, the chance to be able to hear again is a huge driving force for me. 

So, what is a cochlear implant, you ask? To put it simply, it’s like prosthetic ears. It’s rather quite amazing in actuality. A cochlear implant is the only technology in existence at the moment that can functionally restore one of the 5 senses. What I find remarkable, is that this technology has been around since the 80’s! In fact, my cousin was one of the first to ever receive a CI. Back then, he had to wear the processor on his belt or in his pocket, like a Walkman (remember those?) and he had a wire connecting the processor to his headpiece. Now, they are so compact, most people won’t notice I’m wearing it. Oh, and by the way – I’m the last in my family to get a CI –  two of my brothers have them (one is bimodal and one is bilateral) and 3 of my cousins are part of the CIBorg collective. I guess you could say it’s hereditary and my family has blazed the trail well for me to follow suit. I even chose the same brand of implant – Advanced Bionics

The way it works is a microphone captures the sound and transmits it to the external processor (looks like a big hearing aid) which converts the sound into digitally coded signals. The headpiece (small magnetized external component) which is magnetically aligned over the implant, receives the signals from the processor and then rapidly sends the signals through the skin as radio waves to the implant. The implant receives the signals and interprets them and then sends a specialized pattern of electrical currents down through the electrical array into the cochlea where the implant emits it as electrical stimulation pulses to the nerve receptors (similar to the work of the tiny hairs in a person with normal hearing) in the cochlea. 

I’ve been profoundly deaf for almost 4 months now. Totally deaf in my right ear with 110db hearing in my left, and let me tell you, that amount of hearing doesn’t do much. Without a hearing aid in my left ear, I hear nothing. With my hearing aid, I can hear some sounds and speech is likened to an episode of Charlie Brown when the teacher is talking. Prior to losing all my hearing in my right ear, I was classed as severe to profoundly deaf. I always struggled, but managed to get by. While I had to rely heavily on speech-reading (aka lip reading), I could still enjoy music and obviously hear things happening around me. Life is so much more different without sound.

It’s important to note that a cochlear implant does not cure deafness. I will always be deaf but the cochlear implant will allow me to hear again, as long as I wear the external processor. I may never gain the fully functional hearing of someone without hearing loss, but with a lot of practice and training, I hope to be able to carry on a conversation without lip reading, enjoy a movie without captions, talk on the phone, and maybe even enjoy music again! That hope is what inspires me to undergo the surgery.