hearing aid help

[Karbob]

hi have been diagnosed with Acoustic Neuroma July 22. On watch and wait. I am struggling with hearing aid which is new as now muffled. Is this very common can anything help? Hearing loss classed as severe to profound.

[Scubapup]

Hi, im a 37-year old male and was diagnosed with an AN about three years ago and am currently on watch and wait. My hearing on right side has deteriorated over that time, with screaming tinitus and muffled hearing. I was in denial at first as left side is fine and that compensates and makes the issue less noticeable. Hearing loss described as moderate to severe but only at certain levels. Was recommended a hearing aid which I initially declined. However Ive now had one for 2-3 months and is making a big difference. The longer /more you wear it the more noticeable it's effect. I've notived if remove hearing aid and out headphones in to watch movie or something then the sound is clearly muffled again, definately working, whether I like it or not. Stay positive.

[DizzyDolly66 in reply to Scubapup]

How do you go about getting a hearing aid? I was diagnosed in May but have not been told what will happen yet. Do I have to wait till I hear from the hospital and they arrange an appointment with an audiologist? Do you have to pay for hearing aid? I’m 65.

[Karbob1 in reply to DizzyDolly66]

unfortually every area does things differently. Gp refers you here. So you could ask them. However nobody tells gp anything and consultants don't tell audiology anything so you end up trying to explain it all every time.

[Karbob1 in reply to Karbob1]

hearing aid if

[Karbob1 in reply to Karbob1]

sorry hearing aid is free here.

[DizzyDolly66 in reply to Karbob1]

I think I may be lucky getting GP to refer me but I’ll give it a go thanks.

[Scubapup in reply to DizzyDolly66]

Hi, I was aware my hearing was a bit off, repeatedly saying 'eh', what', 'say that again', so when I received my yearly MRI appointment I phoned consultant and told him I felt hearing was suffering and was sent to audiologist. Whilst hearing is not as bad as some, they said I could benefit from a hearing aid and offered me one on the NHS, however I went private as it's much smaller and sleeker. Apparently it depends on the local health board as to what they offer. Some offer modern aids, and some issue quite big more old fashioned ones, money I suppose. Whilst I can manage fine without my aid, it's certainly has been beneficial in my day to day work, however that's three months or so in and i fully expect hearing to worsen. Hope his help.

[DizzyDolly66 in reply to Scubapup]

Thanks. I had no idea how one went about it. I need to tell them about my hearing as I don’t hear bicycles or even cars sometimes which isn’t ideal. I’ve had a few near misses recently.

[Karbob1 in reply to DizzyDolly66]

Yep same. Can't hear bikes(had so many arguments with them on footpaths) On roads I know to look carefully.

[Karbob1 in reply to Scubapup]

I had my first hearing aid march 2021 . Took about a year to get MRI scan. Hearing got worse March this year. Was give AN diagnosis July this year. Now waiting for CT with contrast. But new hearing aid I got August expecting it to help like first one did last year. But it just doesn't. I have been back and it still doesn't seem to help.

[Alison_L]

I’m in the same position, the audiologists don’t seem to understand that I haven’t just lost the volume of my hearing in that ear, but what sound is going in is distorted, so an aid that just increases the volume is worse than useless. They will keep fiddling with their computer and say “is that clearer?”, and they’re confused when I say no. They’ve given up on me for the time being, and I’m now awaiting GK/CK radiotherapy.

[Karbob1 in reply to Alison_L]

that is exactly how I feel. All I hear nowis my own voice or background noise.

[Bizzyhazel in reply to Alison_L]

hi Alison .

I’ve just looked at your note on hearing have you got tinnitus hissing going on or muffled hearing ?

[Alison_L in reply to Bizzyhazel]

Hi Bizzyhazel. I have both. I describe the tinnitus as white noise/static, but hissing is also a good description. However, it’s at a fairly low level and seems to be separate from the hearing loss which I call distorted rather than muffled. According to audiology I’ve lost the lower sound register, but higher sounds are still there.

[Karbob1 in reply to Bizzyhazel]

Hi I have a low buzz a high buzz and a noise that is intermittent that sounds more like a crackling that sometimes goes across my forehead.

[Happy-Singer]

Hi karbob, since my VS/AN diagnosed, and treated with gamma knife last November. I have complete hearing loss in right ear, I too now wear hearing aids. They are CROS hearing aids, although the hearing in my left ear is fine.

The aid in my right ear, the deaf ear, transfers all sound to the aid in my left ear, this can be confusing as all sound comes through the left ear. I cannot determine where sound is coming from. I think this makes my dizziness feel worse.

I am now looking towards bone anchored hearing. Hope this helps.

[LikeBillyo in reply to Happy-Singer]

Hi happy Singer, please go back to your audiologist and tell them about sound coming only from one side. I have total hearing loss RHS, but with my CROS aids, the sound is back to almost "surround sound". I did need to get them adjusted after a month or so, but they're great now.

[Happy-Singer in reply to LikeBillyo]

Hi Billyo, that's interesting because they told me I will never hear from that ear as its profoundly deaf, hence the CROS hearing.

I am going to see the audiologist this week I shall ask her.

Thanks for your comment 😊

[LikeBillyo in reply to Happy-Singer]

Fingers crossed for you. I don't actually hear from my ear (my audiologist called it decorative now 😂), but now they're adjusted, the aids fool my brain into hearing more equally.

[DesertLady2 in reply to Happy-Singer]

Hi I have a very similar situation, but have not had Gamma Knife yet...tumor still small...did you balance not get corrected since the surgery? I thought once the tumor is removed or shrink, your balance would be corrected by the other ear taking over??? That's what my doctor told me anyway!

[Happy-Singer in reply to DesertLady2]

Hi desertlady2, I feel my balance has/is getting worse. I feel drunk most days. I also feel that the hearing aids are not helpful to me as I cannot differentiate where sound is coming from, hence I am going to talk to audiologist about bone anchored hearing. I also suffer with constant headache/migraine too, which doesn't help, but this is nothing to do with AN/VS. Wish I could be more positive.

However the consultant has said it can take up to 18 months to get benefit from treatment, I am nearly a year on with no benefit yet, still hopeful.

[DesertLady2 in reply to Happy-Singer]

Wow... I am glad you are reporting this...I have one hearing aid in my right ear (left is the bad one) constant tinnitus in left hear with hearing loss....hearing aid helps slightly...doc said a one sided hearing aid would help and the good ear would pick up the sound for the bad ear. Well, not so much and tinnitus is just as bad. I only wear the hearing aid when my grandkids come over for they have low and shrill voices and it does help somewhat to hear them better. Also, I have a small earlobe and hearing aid falls off and they can't seem to get a good fit for the dome and the actual hearing aid..it constantly pops out and I am afraid I am going to lose it. But getting back to the AN...mine is only 8mm so I am on wait and see, but if you aren't haven't relief from the migraine headaches and pressure (that's what I suffer from) I am thinking twice about going through the cyberknife procedure! By the way, I am 79 and the doc thinks I should just leave it alone since it grows slowly and hasn't grown in 6 months.

[Happy-Singer in reply to DesertLady2]

Hi desertlady2, I have had headache/migraine since June 2018 feels like everyday, have tried a mixture of medication and still trying, nothing seems to shift it. They told me this has nothing to do with the AN/VS and this was an incidental find with investigations for headache, but I thought treatment would give me relief from headache, but no, they were correct. Are you on any treatment for headache?

I decided treatment was the best option for me as I had symptoms of intermittent hearing loss, dizziness and tinnitus and my VS was growing approx 2mm per year. I am still awaiting the benefits of treatment.

my list of issues appear to be growing these days! I will be 66 in November.

[DesertLady2 in reply to Happy-Singer]

I have daily headaches that go away after my morning coffee and my brain fog clears! The pressure in my head is very troublesome. Since my tumor is only 8mm and am not getting cyber knife at this point...my neurosurgeon referred me to a neurologist who treats diseases of the head....she sent me for an MRA which is like an MRA but shows all the vessels in the head,..they were all fine. Then she suggested I take Vit B 2, Co-10, and Magnesium. Pretty high doses all of them. Well I did for several but I was so nauseous everyday, I started deleting them one by one and now I am not nauseous anymore....it was terrible walking around like that all day and not having an appetite...I couldn't even think of certain food without feeling sick. By the way, the migraines and headaches continued!😬🤮

[Happy-Singer in reply to DesertLady2]

Oh I'm so sorry to hear that. You got me quite excited I thought you were going to come up with a solution for your headaches lol. I too have pressure and brain fog

BTW as a matter of interest, what are you taking for your headaches??

[DesertLady2 in reply to Happy-Singer]

I only take Motrin for headache...try to limit to once or twice a week. Neurologist said try not to take more than 2x a month or you might get rebound headache.....Of course, this is impossible...who can function with a migraine?

[Happy-Singer in reply to DesertLady2]

I was on 8 paracetamol originally and ibuprofen GP said not to take them as cause rebound headaches, so tried numerous tablets then put me on gabapentin. But they seemed to mess with my brain, then swapped to Pregabalin, which was the same, so came off them too.

Now GP put me on candesartan, but still getting headache so now taking CBD capsules and feverfew (Herbal), also back on paracetamol but only take 3 a day. Need to give the CBD and feverfew a chance. Also rub a herbal balm on my head. 🤞Something will work at some point. It's so depressing.

[Bizzyhazel in reply to DesertLady2]

hi

I had balance killed on LHs before op .

Worked real hard on balance exercises before op as well . I’m 12 weeks post op and balance is still a daily battle . You’ve to look well ahead and watch more than ever .

Keep positive and be patient . 🌸🌸👍

[Pinkrose1]

Hi, when i first had my hearing aid i was so excited to be able to hear certain sounds again but in just a very short space of time i could no longer hear those same sounds. My hearing too was severe loss and I think it was just changing so quickly. By the time I had my surgery i was so deaf that I didn't notice any difference after the surgery which for me was a benefit as i know it would have upset me more if i had lost hearing suddenly

[Karbob1 in reply to Pinkrose1]

Thank you so much for replying. Think I am bit like that. It has got much worse very quickly. Feel I cope just as well without it. But know I miss loads. Perhaps I should go back but really had enough for now.

[Kobegeorge]

Hi

I have had an AN nearly 3 years dizziness and hearing loss was in what got me referred

My referral and mri were really quick once I got the GP to listen to me regarding the severe dizziness

My ENT consultant referred me for my hearing aid again got appointment really quick the different the hearing aid makes is amazing I didn’t realise just what I couldn’t hear. The audiologist determines what you need it’s amazing

Mine is an NHS hearing aid but its really small.

I had radiotherapy in July this year as my AN had increased in size, hearing has changed slightly I think but the aids I have are still ok

Hope this helps

Kim

[lupie-Cathy]

hi I had the same problem with my hearing aids I couldn’t hear the telephone or television and was getting left out of conversations so I gave up on the nhs ones and went private. I have ones that Bluetooth to my smartphone and my phone calls go straight through to my hearing aids which makes life so much easier! I also have a Bluetooth audio output from my tv ( though if the programme sound isn’t good it doesn’t help much then) and a personal listener for meetings.

I understand if you need these things for work then you can get some help from your employer towards the costs but I don’t work so not sure of the ins and outs of that.

But try speaking to your audiologist again and really push for something better they tend to give you the absolute basic ones until you start asking what else is available as “these ones aren’t helping” though it’s still a postcode lottery for services! Good luck hope you manage to sort something out

[Karbob in reply to lupie-Cathy]

thank you it is a lottery sadly something's don't change. I am self employed so employer isn't a problem just the mind field of what is best for me.

[Kristyll]

it takes quite a long time to adjust and it’s best to speak with the Audiology department

[JDN57]

I was diagnosed last October with a 11mm AN and referred to audiology. I'm lucky that my doctors surgery has a specialist audiology centre so was treated within weeks at the GP practice. I lost almost all my hearing on my AN side literally overnight (that was what started the investigation) so considered severe hearing loss (I think just about 12% remaining). The hearing aids I got are NHS but slim and bluetooth to phone for calls and listening to music which is great. I understand what you mean about muffled sound, you can have them adjusted so the pitch is better for you. I took the decision to have hearing aids for both as I'm 65 and had a little bit of hearing loss on my left side and they explained that when I lose all the hearing on the right right, I would be already use to wearing one on the left. I would go back and get them adjusted.

[Karbob1 in reply to JDN57]

Hi I am still waiting for my mri scan with contrast. They have said so far that it is 12mm x 8mm x7mm. But I have very similar problems with hearing only one side. They have said sever to profound on left side. My right is normal. Dizziness isn't too bad. Worse in dark Get my contrast scan next week.

[Kristyll]

I can just say it takes a long time to adjust to wearing an aid. Good luck

[Karbob in reply to Kristyll]

Have had a hearing aid for about 18months just on left. Noticed I couldn't hear with it and went back they have given me a new one with a mould but still just muffled. Waiting to see what the scan days then will go back again. Thank you for replying everyone's comments have been very helpful.

[Kristyll in reply to Karbob]

I am scared to use my aid in case I lose it as it is so tiny and wearing glasses also.last time I could not find it, luckily it was in my car