What to expect with first ENT after TBI: Husband... - Headway

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What to expect with first ENT after TBI

New_beginning
New_beginning

Husband still has dry blood coming from left ear (more) since March, Tinnitus reason for ENT referral made in July, but first app Hearing Test then consultant week later. But with dried blood still in the way, i dont see how the hearing test can give clear result. Will they arrange to remove blockage, or do we continue for it to find its way out naturally.

We dont know what to expect from first ENT from TBI any guidance.

57 Replies
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I had my dried blood clots taken out by the nurse at the Drs surgery she tried to suction them out I was given olive oil to put in my ear for 5 days beforehand, the Dr was hoping a blockage was causing the tinnitus but the nurse ended up using a pair of tweezers to pull out 2 dried blood clots

New_beginning
New_beginning in reply to jodac

App 26th Nov, consultant 2nd Dec, wonder if consultant will attempt might but will see what happens, if no getting out will see nurse, meaning at same time then will get bloods done at same time to check hormone levels, was hoping to avoid gp surgery during december.

Thank you so much for info.

Hi New_beginning, is it worth leaving a message for the consultant before the ENT clinic appointment letting them know about the dried blood? Might be worth a call to see possibly? Let us know how it goes 🌸

Yes i have annual leave friday 27th with hispital home visiting will make phone call to leave a note for 2nd dec with consultant to make him aware before friday 9:30am visit.

My to do list home/work/medical apps is just trying to tackle, just getting longer, but hey is what it is . Keeping my mind distracted x

It can be like that just with a couple of children and work, and then you are doing so much for your husband and his needs on top. You are coping with a lot - have you got any support for yourself with so much going on? Sorry, that's just adding to your list isn't it? Take care x

No i have no support, few friends message frequently, they have own family and work. A friend of 26yrs lives round corner her children same age as my son, she stopped visiting months ago and rarely get messages. Family totally disappeared months ago (May). Headway said i can call anytime to when mood low. I only have this forum. Im constantly on the go. With work im still doing full time, but i dont think for my wellbeing i can do much longer, but cant afford to lose wage as not entitled to anything (i checked with telephone call). Im stuck, our toddle doesnt start school until sept 2022 so constantly on the go and i cant afford to pay anymore childcare, though at 3yrs old entitled to hours free, but due to waiting list lucky next september we may get 3 half days. X

You are being very strong and resourceful then. Things sounds difficult.

Look, I don't want to give you more things to do, or say any of this is a complete solution, because they probably won't be totally - and I think you've already looked into the care allowance - but wondered if you've tried any of these websites?

home-start.org.uk/contact

moneyadviceservice.org.uk/e....

carersuk.org/

I've heard that Homestart can be good.

You take care today, and am sending a virtual hug

Jen x 🌸

Thank you x

jodac
jodac in reply to New_beginning

I seem ent a week after and I always regard it as my best appt I had the hearing on my left ear checked explained about the buzzing I then seen the ent specialist explained that my brain had bled out my ear I'd fractured my temporal bone behind my ear but he'd read my notes and said it happens with the tbi and considering I'd my face bashed in I was doing ok,he set me up with a hearing aid to improve hearing people and the sound of the tv and to lower the tinnitus ,I had it 2 weeks later a small behind the ear one it's hardly noticeable but bliss I can hear better and no tinnitus at all when it's in ,I take it out when I shower or sleep but wear it from as soon as I wake I'm not embarrassed by it,it's tiny not to hear the tinnitus is bliss,good luck

jodac
jodac in reply to New_beginning

About the dried blood don't worry too much my ear specialist at ent is well aware of the issue he said he gets phone calls from icu regarding a patient bleeding out the ear by the time he gets there it can sometimes be too late so I kinda think regardless im lucky to be here and your husband too ,he also said it's the brain not the ear causing it,it can either go after a year or be permanent now I've got the hearing aid I can live with it better

New_beginning
New_beginning in reply to jodac

Thank you for the reassurance x

jodac
jodac in reply to New_beginning

Your wellcome stay strong ,ent for me was definitely a positive

New_beginning
New_beginning in reply to jodac

Im glad he has appointment despite with Covid does impact when fatigue poor which is every day, but due to time of appointment 5pm its going to be difficult to attend with husband for hearing test, plus not been able to get him inside a hospital since march, reason for home visits, (behaviour), i have no childcare support for toddler and states only 1 person allowed to attend with him, so our 15yr old son will support him. Hes great being a young carer and has had to mature quicker this year and will have me on phone if needed. Its my only option (guilt), i cant take toddler, we have no support networks everyone disappeared totally now. But consultant app 2nd dec at 2pm our toddler at playgroup so i can attend and ask questions. It juggling things around but all the right reasons to get the outcome at the end to minimise tinittus issues 🤞

jodac
jodac in reply to New_beginning

It's really good that your son can do this,mine were together first hearing then ear specialist I got 2pm I'll keep my fingers crossed for the hearing but when you get the consultant make sure you get everything across to him that you want to ,get any feedback from your son about the hearing test,emphasise the tinnitus my hearing isn't that noticeable and I have short hair but it's the best thing to deal with the tinnitus I don't hear it when the aids in it makes you feel as close to normal again

jodac
jodac in reply to jodac

Sorry it should read hearing aid isn't that noticeable

New_beginning
New_beginning in reply to jodac

Yes he cant hear good in left ear hardly anything, he knows the hearing aid is needed and 🤞 he adjust wearing, if/when time comes. We know it can be a lengthy process so hoping by summer 😬. Referral made in July for 26th and 2nd Dec apps

jodac
jodac in reply to New_beginning

Same ear for me I used to watch people's lips if they talked to me on that side,once he's had the hearing test and consultant apt it shouldn't take too next summer I was called back within weeks for the aid

New_beginning
New_beginning in reply to jodac

Yes he has to be face to face for speech and hearing, which is improvement from months ago and on my part as well. Well i have timeline hoping by summer based on covid and services impacted but glad we got foot in door at this stage. Think 2nd Dec app with consultant will give clarity on direction and fingers crossed on device

jodac
jodac in reply to New_beginning

My hearing appt was with audiologist then ear specialist but it was audiologist who put together the hearing aid she just didn't have time that day but the parts were all there,so I should imagine most ent depts are the same so here's hoping it won't be 6 months

New_beginning
New_beginning in reply to jodac

App was long 2hrs, its a toss up on 2 devices slimline or normal type of hearing aid but hearing services need to get 6 parts, there hoping with 3rd Dec app be ready but could be 2wks hes putting in notes for consultant to tackle dried blood on app, but due to mass of dried blood could be more apps to ease. I attended with husband took toddler, i couldnt let our son take on responsibility although he would of dealt maturely my husband was calm (ish) but 2 small incidents with anxiousness but he done well with coping. I wasnt able to go in with him for hearing test but i spoke to them after as husband then went in daze, think too much. Been long day with anxiety entering hospital building, so were heading to bed as home visit 9:30am in morning.

jodac
jodac in reply to New_beginning

Glad you were able to go the good thing is they know he needs one and hopefully they'll sort out all the dried blood issue too,I have a mini bte (behind the ear) and for me it works great,also whichever hearing aid he gets make sure they let you know regarding batteries I used to be able to pick mine up at ent reception but with covid I call a number and they send me a 4 week supply.He did well today got his hearing test done they know there are issues so it's a positive day,you take care ❤

New_beginning
New_beginning in reply to jodac

Appointment didnt go well, ENT Consultant confirmed hearing difficulties in left ear referral to audiology now to get hearing aid fitted . However, she didnt have notes about TBI, so had to go over everything, looked in ears and tried to get dried blood out.

OMG, caused pain (still painful now 9:30pm, app 2pm) which caused negative behaviour, the consultant flapped and i had to calm situation down, at the point she got all tongue twisted and kept going back on referral topic and then prescribed sofradex. So collected toddler from playgroup whilst husband holding his head in car, went to Lloyds pharmacy, none in stock, told to try boots, went boots pharmacy, told try tesco they have different supplier. Went tesco, luckily toddler napping 90mins after driving around, running in/out, queues. Explained by tesco pharmacy, they stopped supplying in March, we have to go back to ENT Consultant.

Based on Consultant flapping then taking time to briefly research Sofradex, im going to email neuro surgeon secretary cc ENT consultants secretary and husbands GP. I may be bit OTT, but ENT consultant flapped and prescribed something apparently i could get from any pharmacy when product discontinued March. My practical theory, GP, Southmead, ENT need to communicate and i need to support this, we are in for a long haul

However my 6th sense felt this 5am this morning, did run (treadmill) to help knacker me out to go bed shortly after work, back and forth with toddler, appointment, prescription run around. My son gets home from school and were all calm and hes not a clue of our eventful day, so just writing that last bit, brought smile to my face,

jodac
jodac in reply to New_beginning

So just a normal day for your son ,this made me smile the last parts just great,surely the ent consultant could have checked his notes and surely they shouldn't be recommending something that's discontinued,my ent specialist was the opposite he'd read my notes far too well he sat starring at my face I'd managed to fracture the whole left hand side of my face in my accident and he wanted to know if I'd had any plastic surgery my ear was immaterial but hey I got a great hearing aid so no worries .You are going to make this long haul look how far you've come so far and you could still smile at the end of it you have more strength than you realise and I'm glad you do,dare I say I look forward to the next episode 🙄

New_beginning
New_beginning in reply to jodac

Well neuro surgeon secretary called 8:15am today, i explained the situation she did rightly point out not there dept and i should call ENT consultant, i stated ive left numerous messages not one call back (honestly i could get done for harrassment) I said truth after ENT Consultant lost confidence treating husband, didnt have notes and prescribing discontinued medication, think TBI out of consultant depth. So advised to call husbands GP. Called GP 8:25 left message on situation and in an hour new prescription to local pharmacy done.

Bad news ive been on duty all day (countywide) with work and coming home, husband stated toddler unwell, so had to dash and couldnt get prescription 🤦🏽‍♀️🤦🏽‍♀️🤦🏽‍♀️

I will call ENT Consultant again though tomorrow give them update and double check referral has been done for audiology

jodac
jodac in reply to New_beginning

You've got harassment down to a tee make sure you put it down under your life skills but seriously that's how you're getting things done and you've got the prescription so carry on doing what you do best.Tomorrow I have my 2hr physcology assessment at the brain injury unit but I'm fine on that,now tell me this are on going with him to the radiologist if you are I look forward to it 😜 stay safe

jodac
jodac in reply to jodac

Sorry predictive text I did input audiologist

New_beginning
New_beginning in reply to jodac

All the best with the assessment, your going to feel so tired after . Yes im going to his audiologist app probably with toddler, hes not able to attend any medical apps on own yet, but home visits hes fine now since october and i attend session once a month to give update

jodac
jodac in reply to New_beginning

He'll get there it's just baby steps mine was end of January last year and the difference this year has been great

New_beginning
New_beginning in reply to jodac

It brings much hope with those words,. I hope youve rested after an exhausting day and take it easy these next few days x

Update. The pharmacy that GP sent prescription too, didnt have in stock and no delivery known. Told to ring around first this time then phone GP again if no luck. Found pharmacy few miles away and first drops done.

jodac
jodac in reply to New_beginning

Glad the first drops are done,did your husband still bleed after what happened to him?Did icu not take care of that,icu for me did it was just with the hearing and tinnitus issues they found the 2 dried blood clots,my son always says at the time it happened while waiting for the ambulance that he knew I was alive because every time my heart beat the blood spurted out my ear,he had to redecorate but he's all good,my psychology went well and he's going to recommend that no further rehab is needed,we all take different times to get were we need to be my fingers are crossed for you,stay safe

New_beginning
New_beginning in reply to jodac

Oh what wonderful news for you and great determination with your recovery.

Well his ears wasnt on show first 3 days, then 4th day rolled up towels removed but both ears caked. No new blood shown with hearing test, just a massive clump stuck. Hes had a ear ache today, so im assuming the drops doing something disturbing it, as really it is a foreign object that shouldnt be there.

Speaking to southmead as they had scans in front they said its very likely with 2 fractures healing its fused on nerve.

Well hearing service and ENT Consultant said the same, offered MRI, but based on husband not at stage to even carry out and hard getting him in hospital it, then added negative behaviour during appointment, Consultant and I both agreed its not suitable. Husband in room, but at that point he couldnt take anything in, so repetitively gone over, he agreed that evening hes not at stage to do. Matter of waiting for next appointment with audiologist now

jodac
jodac in reply to New_beginning

Bless him that can't be easy if it's fused on the nerve I had just one fracture behind the ear the ear specialist when he eventually stopped looking at my face and checked my ear said he could see that my fracture was healing nicely made me wonder what you can see when you look in an ear,I was lucky that the nurse could tweezer out the 2 dried blood clots.Thank you for saying about the determination I'd loved on my own for years and my son wanted me to stay with him for a year but I knew I'd not be allowed to do anything and I needed to if I wanted to live my life I've had to adapt things I have memory issues but loads of post it's my left hands the worse they put the cast on when I was in the coma and the cast slipped by the time they realised it was too late and my wrist bones are twisted but once again I've adapted,I always think through all of this my son suffered more he could see the damage done just the same for you but stay strong and remember harassment is your middle name,stay safe

🤕

New_beginning
New_beginning in reply to jodac

Well yesterday and even cleaning husbands ear as movement from drops, 🤢 the dried blood coming out and smells bad. No change on hearing, but said doesnt sound hes under water type of noise, like muffle. He still feels more to come out. It really did make us feel queazy we had to sit down inbetween trying to clean. Dose finishes Monday so anymore that feels is in there, just going to book GP nurse to get remaining out to which he has agreed.

Its brilliant you have adapted so well, were still in process with trial and error but see a difference from 1month ago with behaviour, but he does have short term memory, fatigue major issue still no predictability, we use visual board in kitchen and mobile as reminders, its working so far

jodac
jodac in reply to New_beginning

I know that muffle,my Dr had hoped that if my ear was suctioned it would improve the hearing but only the hearing aid has done that.You seem to be doing well with the adaptions it's like everything there's more than one way to do things it's working out the best way for you and him.I use my mobile too for reminders the timer on it too if I put anything on the cooker I used to forget I'd put things on till the smoke alarm went off now the timer works,the fatigue is less this year than last but still there.It's good that he agreed to let nurse near that ear that in itself is a step forward because it hurts him so keep doing what your doing and date I say it that you seem happier which is just as important😊 stay safe

New_beginning
New_beginning in reply to jodac

Were doing well on cooking, has to be supervised and clinical psychologist suggested areas i could improve on, basically for me to be mindful of wording when we cook, turning things off, and husband has good insight not to cook when im not around, we do together and been pleasant this week.

I spoke to secretary going to be months, people on waiting list prior covid are still waiting. I said its just the knowing, and i appreciated the honesty of timescale, plus helps with my workload, knowing one reduced appointments.

Ive yet to book nurse, will wait until Wednesday as dose finishes Monday but just prepping him at the moment. Its still coming out 🤢,

jodac
jodac in reply to New_beginning

He must have had a lot of blood left in there I know you said it was 3 days with towels but I'm surprised hospital didn't do more,I think it's nice that you's cook together that's a good thing in normal situations,I didn't e nice to hom understand what you're waiting for is it supervision for him in the kitchen,covid is causing a lot of issues with appointments I'm waiting for an operation on my good hand expected it March but it'll be next year now.He must have lost an awful lot of blood with having 2 fractures,have the fractures healed ok?Bless him it can't be easy going through that,stay safe

🙂

New_beginning
New_beginning in reply to jodac

With support from ICP monitor and incredible Southmead ICU he has Right Temporal Contusion, Subarachnoid Hemorrhage (SAH), Right Sided Transverse Venus Sinus Thrombosis, Small Subdural Haematoma and Left Petrous Temporal Fractures. It was frightening amount of blood. But hes here and developing well in southmead 16th March, home 31st march but i refused rehab unit due to poor standards shown, and nhs couldnt deny because of covid, its in his medical notes, . I dont think its heard of before with TBI but his safety and care needs were not being met i had to get him home and it was scary first 4.5mths with post traumatic amnesia

Yes my friend meant to have hip replacement over summer, shes been told might be in 10months, she retires 1 year after. I think were all in same boat with covid backlog 😪

jodac
jodac in reply to New_beginning

I had the SAH in my right frontal lobe both temporal lobes and superior frontal lobe then various other haemorrhages and a mass of extra dural haematomas my brain specialist just says I injured different layers of my brain I've been very lucky and so has your husband I always feel that I got a second chance of life and so has he

👍

New_beginning
New_beginning in reply to jodac

Yes, i find myself thinking its all a miracle . I agree with you with second chance of life.

New_beginning
New_beginning in reply to jodac

Phone call today, digital hearing aid with instructions being sent in post with batteries, they said be another week until posted. Well didnt expect the phone call with consultation. Merry Christmas and stay safe

jodac
jodac in reply to New_beginning

Well when it comes I hope it works for him I know I feel it's made a difference to me so here's hopeing that it makes that difference for him too and moves him another step forward,merry Xmas to you, him indoors the toddler and the teenager,stay safe and enjoy your Xmas 🥰

New_beginning
New_beginning in reply to jodac

Hearing aid and loads of batteries, information arrived today. What a difference. Advised to wear gradually it has really made him tired after 2hrs. I feel this may be positive, in a way. 🤞

jodac
jodac in reply to New_beginning

I was advised that too but I found the difference with it in was great to actually be able to hear things properly and no buzzing in my ear was wonderful so from the beginning I've had mine in as much as possible,how did he feel about it ?Did he notice any difference and how did he feel wearing it?

New_beginning
New_beginning in reply to jodac

He fitted it well, when he said i feel too tired he took it out, think he should of done sooner he held out, and we both said maybe brain working hard. He said what a difference and has been positive about it. Advised not to wear round toddler to begin with but he did. The tinnitus is constant but with tiredness coming on sooner than usual made tinnitus louder. But has managed behaviour so far, i do feel any sooner he wouldnt of been able to manage, were coming on week 6 with positive behaviour with short fused clitches. I think when it arrived it hit him, apart from dents and healed hole in head first noticable device.

jodac
jodac in reply to New_beginning

Yes the tinnitus always seems louder when tired,did it ease the tinnitus wearing it ? I think it's adjusting to the changes after a tbi I have the dents and hole but can hide them with hair my hearing aid too can be mostly hidden by hair,hopefully when he gets used to it he will see it as a positive in that it helps him,I'm glad everything else is improving 👍

New_beginning
New_beginning in reply to jodac

He wont grow hair but early 40s receding these last few years so goes bald now lol. Think we will monitor over the next few weeks to get clearer picture. They mention device for tininntus but think actual face to face appointment needed and with tier 4 restrictions may take a while to gey sorted

jodac
jodac in reply to New_beginning

My ear specialist geared my aid to tinnitus and increased hearing but tinnitus first and as soon as I put my hearing aid in the tinnitus goes so I must have that device,so push for that appt because tinnitus drives you mad although it seems to be coming from the ear it's the brain he said he doubted it would go now if nothing at least he was honest,poor him indoors with tinnitus and hair issues🤫

New_beginning
New_beginning in reply to jodac

Well day 2 with hour here and there, headaches today. I was home by 12ish as still working 🙄, but will monitor with few days off, as he needs reminders to drink/eat, so hoping it was lack of fluids today as no headache yesterday. Im going bed shortly, glad to see back of 2020 but appreciate the news skills achieved despite this on going experience. Life has become different, and i certainly view in different way now. Happy New Year for 2021 again 🥳,

jodac
jodac in reply to New_beginning

Happy New year to you ,him indoors the toddler and the teenager.Life is definitely different now in many ways above all else you should be proud of what you've achieved this year,today I'm wishing you a nice quiet peaceful day,hopefully headache free for I'm indoors,you take care and stay safe👌

New_beginning
New_beginning in reply to jodac

Gosh I hope today not a sign, i jinxed myself saying near 6 weeks good behaviour, record broke todat To top off toddler having wobble. Both over tired all day meaning ive had to cool. Shed brief tears after toddler settled after screaming fit going bed. I have no personal expectations for 2021 But maintain moving forward, use my coping mechanism and strengthen skills.

jodac
jodac in reply to New_beginning

Maybe he was feeling under pressure with his headaches yesterday and maybe like you said when his hearing aid arrived the changes are now hitting him,tears work they release the tension inside and you cope beautifully with what you face ,I just think I came out of mine so lucky I didn't get the headaches I get a dull headache now and then and just pop 2 paracetamol ,my hand doesn't work properly it's painful everyday when they put the wrist cast on when I was in the coma it slipped and the bones are now twisted and nothing can be done but when my son rings he always says "they fixed your brain first ,what's the point of having a good wrist if you're 6ft under" and it's true so I adapt but I also know I'm lucky,him indoors is very lucky too to have you, we are always here for you too never forget that so fingers crossed that there's no wobbles tomorrow,take care ❤

New_beginning
New_beginning in reply to jodac

Still no progress with hearing aid, bit of a stale mate at the moment. Were expecting home visit next week from brain injury team (not been cancelled yet) hopefully explore how to manage fatigue, behaviour . The hearing aid works great, but fatigue and behaviour been somewhat challenging after, even with 1hr wearing to the point past 2 days he doesnt want to wear due to not being able to manage, hes recognises now it causes issues, its heaŕtbreaking and sad observing hes trying but TBI just not having it. Now im questioning is he ready, will he ever be ready to wear full time.

Dont know what to do, he cant hear without clearly but behaviour esculates from wearing it. Its been a tough time managing and im just hoping home visit not cancelled as so much to updates to give.

On the bright note daughter turns 3 this week, and again this just feels special x

jodac
jodac in reply to New_beginning

You need to make this very clear to the brain injury team that he needs it but can't cope with it,is it because of the noise while he's trying to concentrate,mine was a blessing because it cut out the buzzing but I know that when I was doing some tests at brain rehab if they wanted me to do a task and played music (on purpose ) I couldn't cope with the sound I can drive but I can't have the radio or a CD on I have to have total silence to drive yet before it was the first thing I put on when I got in the car.I'm really sorry it hasn't worked out for him but push the brain injury team for any solutions or see if a different hearing aid would be better,noise does affect you after a tbi.Happy birthday to your daughter it must be great to buy pink I had boys but can do it now with 2 granddaughters,hope something good comes out of brain injury team meeting,stay safe👌

New_beginning
New_beginning in reply to jodac

He seems to hold it together whilst wearing but soon as taken out bang the headache fatigue, behaviour immediately occurs. Yes weve not had visit since before christmas so lots to say on positives and issues.

Thank you, Yes lots of pink everywhere but luckily she likes Dinosaurs to break the theme, and luckily she has her own playroom so nothing spread around the house. Our son did a lovely surprise and got her a card (first time ever). Gosh we still laugh our son being 16 this summer and this beaut of a toddler all in this crazy situation and crazy world.

Yes roll on next week hopefully to come up with ideas so i can think how we can implement, i do feel positive they have answers but mindful will be trial and error to get right.

Yes stay safe too 👍🏼

jodac
jodac in reply to New_beginning

I was told to gradually get used to hearing aid to take it out every couple of hours I'm sorry to say I didn't because mines geared to tinnitus first it was bliss without the buzzing,could that be the issue that the headache fatigue is partly caused by the buzzing and t he muffled sounds before I had mine my ear\ head on the left side just buzzed so loudly I couldn't hear the tv properly my phone had to be on speaker it was so frustrating,can't he keep it in longer it didn't cause me any issues( mind I have a brain injury so that might not be true)I think your son sounds lovely I think this is the making of him too you should be proud and to get the toddler a card is just lovely 15 year old boys openly showing they care isn't the norm,I hope it goes well for you next week and lay off the birthday cake,stay safe👌

New_beginning
New_beginning in reply to jodac

Think we have call mid february whereby audiologist hoping hes wearing full time 😬 by appointment, ive been on annual leave this week and monitoring fatigue poor 2pm -8pm naturally thats without hearing aid, if he wears prior then timescale longer and it takes few days or a week to try get back to where we started. This is improvement as months ago took 2wks or longer.

Yes our son is quiet, hardly talks always has been home boy likes staying in,, so the card melted our hearts.

Yes lots of cake around,but doing 2nd run this morning for this week to justify a little slice with cuppa this afternoon, the boys will gladly eat away to get it gone asap.

Stay Safe.

So audiologist called today 🤦🏽‍♀️ i didnt jot down ,explained about fatigue, but i had next month app right though but forgot about this one, but aim next 4wks to wear full time. But they also hope home visit next week promote suggestions to managed.

Im really getting muddled with appointments, i need to actually get visual diary now, my phone not working for me 😬

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