Tuesday 27 November 2012

Day 20 stapedectomy recovery

Not much has changed except that I am now deafer.  I think it's probably because I have a sore throat and runny nose and cough. 

Thrillsville, as Snoopy would say.

Saturday 24 November 2012

Day 17 stapedectomy recovery

Nothing has changed since my last post. 

No dizziness.  Energy levels normal.  Hearing a bit crap: feels lopsided and I miss some bits of people's conversation still, and it feels like there is blockage in my ear like when you have water in it.  Sometimes I think the distortion on high frequencies is slightly better and sometimes not. 

Hard to be patient.  Definitely don't want it to stay like this. 

Wednesday 21 November 2012

Day 14 stapedectomy recovery

Yesterday was pretty horrible, I think largely because I only had about 3 hours sleep the night before (thanks, daughter no.2).  I woke up feeling as though I had been kicked in my ear, as though it was bruised, and the pain spread all the way down my neck across my collar bone and my shoulder.  That lasted all day: poor me, etc

Today has been much better so far; no aches and pain except the odd twinge.

Hearing-wise I think that some of the lower frequencies are pretty loud, and the high ones remain shrill and distorted.  Middle, I'm not sure, it's muffled, I think I'm missing just as much as before, if not more.  Holding out for lots of change for the better in the coming weeks/months.  Still feel lopsided.

I won't be able to update that much from now on because Adriano is going back to work tomorrow (booooo), so I'll not be able to have uninterrupted blogging time.  He's been great at letting me escape upstairs just when I need it.  I'll miss him loads, it feels like he's been off work forever. 

My big toes still hurt!  No clue what that's about!  Ridiculous!

In other news, G and C are doing great, and the house move is chugging along.  In fact the survey is being done today, so fingers crossed...

Monday 19 November 2012

Day 12 stapedectomy recovery

Having the packing removed was great.  It didn't hurt at all, and was one of the oddest sensations I've ever felt.  It just kept coming and coming.  Had to have cotton wool in my ear for the rest of the day in case the disturbance meant that blood or other stuff dribbled out, but it barely did.  Immediately I could hear more, although it is still poor quality: a bit tinny and distorted.  Still, after days of it all being plugged it's a relief. 

The consultant said it will take 6-8 weeks for it to 'settle'.  I have read much longer than that so it'll be interesting (boring? frustrating?) to see how long it actually takes. 

Things I am now allowed to do: 
carefully lift up my 1 year old who weighs about 25lbs
sleep on the operated-on side

Things I am still not allowed to do: 
get the ear wet (cotton wool/Vaseline/cling film are still my friends)
exercise or do anything strenuous (" no clearing out the attic")
'pop' my ears

I don't think my hearing range and decibel level is quite as good as before the op yet.  I'm not sure.  I feel as if I can perhaps hear bass sounds better than before.  It's so hard to tell. 

Still experiencing gurgles and pops. 

I have an appointment on Xmas Eve to see how it's all going. 

Fingers crossed. 

The consultant also said he had meant to see me when I came round from the op but I was discharged so quickly that he didn't manage it.  And that he scheduled the op for first thing in the morning so that he could do it before his morning coffee which tends to make his hands shake...

Sunday 18 November 2012

Day 11 stapedectomy recovery

I'm at that difficult stage where I can almost do everything normally, energy-wise, but then I get grumpy and tired and need to rest.  Not sure how different this is from my normal sleep-deprived state from the point of view of my long-suffering husband, but it's true I do have a bit of ear twingeing and popping right now and have been ordered upstairs to rest.  Thanks Adriano xxxx

Couldn't sleep last night, in part due to a bit of anxiety about getting the packing out tomorrow.  Since my initial panic that as I couldn't hear a thing I had obviously lost my hearing permanently, I calmed down a bit and was rewarded for my patience with at least some hearing, if bad quality.  I had stayed away from Doctor Google for about a week, but foolishly last night went back to some internet searching and got a bit worried all over again that I should have left my hearing alone and not opted for this surgery, or at least waited until my hearing was a lot worse before risking it.

Also for the last couple of days I have had an unpleasant taste in my mouth a lot of the time.  To begin with it was just lack of taste in the back right quarter of my tongue but now it's the yucky taste as well. 

I'll be on a bus to the hospital tomorrow morning with plenty of anxiety and trepidation.  Wish me luck. 

Want to add that there are times when I have all of this totally in perspective and know that whatever happens I am still extrememly fortunate to be as healthy as I am.  Vaguely related to this sentence is the admission that I have an addiction to chocolate that I beat myself up about, but I just read this so feeling less bad about that right now, tee hee.

People keep telling me I look exhausted.  I'm sure I always do, they're just looking at me harder because they know about the surgery recovery. 

Roll on tomorrow.

Friday 16 November 2012

Day 9 stapedectomy recovery

Woke up with a stinking headache.  The heartbeat noise has gone.  I can definitely hear something from the operated-on ear now, although it's pretty distorted, especially when high-ish pitched.  For example if I whistle it's unbearable because I can hear an out-of-tune 'double tone' in that ear on top of the normal sound.  So shrill voices are no fun either; a bit tricky with an exuberant 3 year old.  I really really hope this irons itself out because otherwise I am going to have to change my career (music teacher).  I play piano and sing and it affects my mood for the worse if I don't get to do it for a while.  Not to mention listening to music.  I am worried. 

3 days until the packing is removed.  Am going to write a list of questions to ask the consultant, such as:

When can I safely lift my children again?
When can I swim again?
When can I expect the full result of the operation?  (Am guessing maybe 6 months?)
When is it OK for me to pinch my nose and breathe out to unblock my ears? (Some hard of hearing readers might know what I mean)

The main reason I am documenting this recovery in such detail is because I hope it is helpful to someone in the future who may be going through something similar.  Thank god for the internet.

Apart from a bizarre moment when I fell asleep sitting up today (I *never* do that!) my energy levels are improving and so is the dizziness.  Not totally better yet but definitely getting there.  Just short rests in bed now and then, and that's mostly just to give my ears and body a rest from my lovely energetic children.  Adriano is doing a fab job of looking after us all.

Thursday 15 November 2012

Day 8 stapedectomy recovery

Had lots of twinges yesterday.  But no painkillers needed. 

Feel a bit better in myself today, although still the need to be generally restful what with 2 little kidlets around.

Was doing 'This little piggy' with C earlier and when it got to the bit that goes 'Weeweewee all the way home' and my voice went high-pitched, I experienced a weird moment where I could sort of hear my voice inside my operated-on ear in duplicate.  Really odd.  Maybe this is what others have described as a 'double tone'?

And for most of today there's been lots of popping inside my ear, and my heartbeat really loud and constant too.  Reassuring - I'm alive! But a little annoying to hear over.  Detracts from my usual tinnitus though. 

Had my first shower since the op.  I put vaseline over the cotton wool in my outer ear, and put cling film over the top of my ear so that I could wash my hair.  The cling film was wet afterwards in spite of my best efforts but I am 99% sure that no water went into my ear, so all good there.  Soooo good to have clean hair again.  It even inspired me to put my jeans on today instead of lope about in pyjamas.  So getting there, if slowly.

4 days until the packing comes out...

The job/moving decision has been made once and for all: we chose not to be sidetracked with 'the right job in the wrong place' and are carrying on as before with the recent house purchase stuff in Kent.  It was a really tricky one for Adriano and me but I believe we've made the right decision.  I'm glad that episode is over, it was horrible.


Tuesday 13 November 2012

Day 6 stapedectomy recovery

I'm doing a bit more now, washing up, playing with the girls, changing nappies, making drinks, making toast.  Just feel tired to the point of mild nausea afterwards.  Or maybe it's the slight dizziness hanging around that is causing the nausea.

If I gently rub the cotton wool in my outer ear I can just about hear the noise.  I *think* this is progress, although really the difference is soooo tiny that I maybe shouldn't even bother mentioning it.  It is still the case that if I'm lying on my good ear I can't hear a blooming thing.  At all.

I managed with no painkillers at all yesterday and today.  Definitely felt some twinges and some general earache but nothing major.

In other news for about the last 10 days my big toes have been hurting.  Wtf?!  Surely not related :D  Now what's wrong with me?!  No more silly ailments please, I'm starting to feel like a hypochondriac...

Can't be bothered to explain the full story here but some eleventh hour moving/job stuff has been going on this week.  It looks like it'll soon all be settled one way or another.  It's amazing how stressy decisions can be sometimes.  Luckily it's the kind of stress that's making Adriano and I close rather than pushing us apart.  Phew.

Monday 12 November 2012

Day 5 stapedectomy recovery

Having compared experiences with others on the internet, I'm now worried that I'm in the unlucky 1% of those who have lost their hearing entirely from the operation.  This is because ever since I came out of the op I have heard absolutely nothing whatsoever from my right (operated-on) ear.  Most people seem to say that they heard really well at first, in spite of the packing muffling the sounds, and that any hearing loss after that was post-op swelling which eventually returned.

I'll have the packing out in 7 days and will see what the consultant has to say about it.  I was under the impression that after the 2 weeks or rest /off childcare duties, my hearing would be great and I would be able to resume lifting etc.  Now I'm not so sure and it's bloody inconvenient not to mention worrying and potentially devastating.  Hopefully I'm just being a pessimist and somehow it'll all come good in the next week or so...

Still feeling fatigue and vague dizziness.  Nothing too dreadful but am scared to push past it in case I jog the position of the artificial stapes bone out of place.

Right now I wish I'd never had it done.  I suspect this feeling is pretty common at this stage in the recovery.  Really hope my fears are unfounded. 

Adriano has an interview today, a long way away, which may change all our moving plans for the zillionth time.  I just don't know what to think about it.  My sister is coming to help me while he's out of the house.  I'm looking forward so much to seeing her.  

Sunday 11 November 2012

Day 4 stapedectomy recovery

I've done quite a lot more today, including hanging out with the kids more, washing up, eating downstairs with everyone else, and a short walk to the shops at the end of our road.  It exhausted me though.  My achey neck and shoulders from yesterday have improved, everything else has stayed the same I would say.  Longing to get this packing out of my ear.  Still cannot hear very much at all and feel in a lopsided bubble.  On about 2 doses of painkillers per day now, which is quite a reduction.  When I try to go without I end up changing my mind, but I don't feel that the pain is dominant.  Ironically the deafness is probably the worst thing.  And the fatigue and feeling of having to protect myself all the time. 

Adriano is being fantastic with the girls.  He has a bad back and interview prep for tomorrow (don't get me started on that) so I wish I could help more.  Convalescing is not fun and I'm looking forward to some improvement soon. 

Saturday 10 November 2012

Stapedectomy

I was diagnosed with otosclerosis some years ago.  In April I had a CT scan to check out the diagnosis once and for all.  Last month I finally saw the consultant whose care I've been under for around a decade of hearing tests at the ENT clinic.  He said I was an excellent candidate for a stapedectomy, which means that my faulty stapes bone that wasn't allowing my hearing to reach its capacity would be replaced by an artificial one.  Adriano's reaction: "Wow, a cyborg wife!"

I was put on the waiting list and expected to hear a date in a few months.  But only about 10 days ago I got a call saying would I like to come in for the operation on Thursday 8th November.  My main problem was that after the op you are not allowed to lift for at least 2 weeks.  I lift C all the time: in and out of the pushchair, into her highchair, cot, bath, etc.  She weighs about 25lbs now.  Occasionally I still lift G too, who is around 2st 9lbs.  Miraculously Adriano's work said he could take the time off to look after me and the girls.

My hearing loss from otosclerosis has gone from 'mild' to 'moderate' over the last decade.  I have it in both ears; my right ear slightly worse.  Before I saw the consultant recently, it had been suggested by other ENT professionals that I try a) putting up with it for now, b) trying hearing aids and c) considering the stapedectomy surgery.  In other words, they all completely disagreed on what my best course of action should be.  I did some research on the surgery a while back and decided that I was probably too scared of the risks to go through with it, and besides how on earth would I look after the kids during the recovery...I would wait until my hearing was REALLY bad before going for it.  The risks include some facial paralysis, increased tinnitus, permanent dizziness, and ironically reduction or complete loss of hearing in the operated-on ear.  However when I saw the consultant a couple of weeks ago, he was so simultaneously calming and enthusiastic about the idea of operating to improve my hearing that I got swept along with it and agreed.

So on Thursday, in spite of niggling doubts, I left Adriano and the girls tucked up in bed, and caught the bus to the hospital in the dark at 6am, starving hungry because of my empty stomach ready for the anaesthetic.

I have never had a general anaesthetic before so I was a bit nervous about it, but far more nervous about the risks of the operation.  Would the surgery be worth it?  I was really pleased that the consultant popped in to say hi and glance over my notes again as he went through the ward on the way to the operating theatre.

The doctor who went over the risks with me had such a quiet voice, and I had to ask her to repeat herself at times.  I find it very strange that some people are not aware of speaking up when they know that the reason you're there at all is because you can't hear much.  So frustrating, and on a good day I see the black comedy in it too.  But it wears pretty thin after all these years.

I haven't slept well for a long time so a part of me was almost looking forward to being knocked out...
The only bit I really didn't like was when the oxygen mask was put on my face, because it seemed a bit small and I felt claustrophobic. Before I could stop myself I had shoved it off, saying 'It's horrible!'.  But they said I didn't have to have it, and just held it near my face instead.  Everyone was very kind.

Then I woke up and it was over.  I know I had been dreaming, but it was just like normal sleep where you can't remember exactly what the dreams were when you try to put them into words.   I gradually became more awake.  I was relieved to find that my facial muscles were all fine, and I didn't feel nauseous.  After about 5 or 10 minutes my hunger kicked in again.  I didn't move much because I sensed that I was pretty dizzy, but other than that I felt OK.

I was wheeled back to the ward, and my blood pressure was rather low so I was given 4 glasses of water to drink.  At last I got some food, it was pretty gross hospital sandwiches but I wolfed them down.  I noticed that my taste sensation at the back of my tongue on the surgery side was altered, as though I had burnt my tongue but without the pain.  The rest of my mouth could taste everything though so it wasn't too bad.

After a while my blood pressure was much improved and I was able to slowly shuffle to the toilet.  I couldn't hear a thing from my right ear because of the packing inside.

A couple of hours later Adriano and the girls came to collect me and took me home.  I went straight to bed and took some painkillers which by now were needed.  They worked just fine.  I rested as best I could for the rest of the day (bit tricky when the girls woke in the night but that's another story).  Felt a bit teary in the evening but it's been a big day and we have a lot of other stuff going on right now so not surprising.

DAY 2
Still on painkillers but the pain has definitely lessened overall.  Still a bit dizzy but nothing too scary.  Feeling very lopsided as of course I can only hear from my left ear, and the hearing in that is not great.  As a result I feel in a bit of a bubble.  It's not nice when I talk as it's louder inside my head which is disorientating.  Don't know which direction sounds are coming from.  Have been told not to lie on my right side and am missing it as that was my preferred side.  Am reading lots.  Loving seeing and cuddling the girls but finding it very wearying when I'm being crawled on, especially as I'm not supposed to lift/push their weight in any way.  Adriano being very lovely and supplying me with food and drink.  Managed a short bath which was great. Changed the cotton wool in my outer ear - dried blood and iodine on it.  By the evening my mild tinnitus (which I had before surgery too) has increased a bit and has me worried.  Think I am probably very tired still so went to bed early. 

DAY 3
Tinnitus still pretty loud and it's not nice.  Dizziness not too bad, it comes and goes, and reminds me to take it easy.  Feel a bit delicate.  Adriano has taken the girls to his dad's birthday meal so all is quiet in the house.  I manage to make myself some lunch and even walk to the shop for a paper although I feel very vulnerable because I look perfectly normal but can't hear anything anyone says to me.  Glad of the fresh air but also glad to get home and go back to bed.  On my 4th book now.  So far have read Lucy Dillon 'The Secret of Happy Ever After', finished Sarah Waters 'The Night Watch' which I had been in the middle of, and whizzed through Barbara Trapido 'The Travelling Hornplayer' which I haven't read for years and is brilliant.  About to start Christopher Ross 'Tunnel Visions'.
Feel so horrible not being able to hear, am hoping it's just due to the post-op swelling and the packing.  At the moment feel as if I would settle for just having my old hearing back.  Have no idea if the op went as planned, as I wasn't able to see the consultant after the op.  Have to wait until the 19th - 9 days from today - to have packing removed.
Bloody ears.  Why couldn't they have just worked properly in the first place?  Hair now could do with a wash but am not going to do it just yet.  Might in a few days with vaseline/clingfilm in place...

Sunday 4 November 2012

Getting there

Thankfully (I think), we are back on track with 'the' house in Kent.  Mortgage delays blah blah blah but we are getting there.  We've been making lists of what to sell/buy/move/do and that's been keeping us busy.  So lovely not to pile the kids in the car and drive loads then see 4 or 5 houses and repeat every weekend. 



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* proud new mother * last child * youngest daughter * tallest sister * favourite auntie * honest lover * furtive photographer * diary writer * compulsive dancer * tree hugger * mooncup promoter * chocolate taster * house plant murderer *

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