Adults with PCD & hearing issues

[C9RPY]

Does anyone here (adults) with PCD have trouble with their ears?

I had grommets when I was much younger and used to hear ok-ish! But the last few years my hearing has deteriorated to the point I can hardly hear anything.

I've been to see an NHS hearing specialist and they've given me hearing aids which I wear. But even with them - I'm nowhere near the point where I can hear like most people can.

Just wondering if this is a PCD thing and others have the same. The NHS specialist said he doesn't know why it's so bad. They offered a t-tube operation (adult grommets) but with the caveat that it will cause more ear drum scarring and I may end up totally deaf.

I'm in my 40s now and not keen on going deaf so I'm soldiering on but really finding it difficult.

[Morrison10]

HI, I’m 87,have PCD and going deaf.. 25 years ago had op and experimental grommet in left ear. Within hours it was totally blocked with mucus but I had to wait 7 months before it was taken out, by which time the nerve in that ear was dead, and nothing more could be done. Hearing in right ear is bad, have a NHS hearing aid that needs turning up or replacing, Have been waiting many months for home visit, don’t do clinics now because of Covid. As widow living alone find it difficult at times, particularly phone calls. I’ve asked for a spare aid when one in use gets blocked, but refused, although most people have two NHS hearing aids. Sorry to moan, hope you have better luck. Jean

PS. I find it important to keep inside ears dry, use cotton wool moistened with Vaseline when wash hair etc.

[LD28 Administrator]

Hi, send me an email and happy to give you information on how you can access a specialist pcd service (in England) which includes ENT advice from PCD specialists. Many adults with PCD have hearing loss, unfortunately this is one aspect of the condition. There are however a range of treatments that may help. Grommets usually arent advised but important to seek a medical opinion. Email is [e-mail]

[Morrison10 in reply to LD28]

Hi, I see Dr Sullivan who is PCD specialist, she referred me to ENT consultant, regrettably didn’t help me.

[Pingu_]

Hi, I also had grommets when I was younger (apparently the inside of my ears are also very scarred and quite shocking to any new doctor!), and I started going noticeably deaf when I was in my late 30s. I saw an NHS hearing specialist and wear hearing aids, which work fine. A friend gave me some helpful tips, like sitting against a wall in a restaurant for better hearing when wearing them.

Since being at home due to Covid (and still only working from home), I'm out of the habit of wearing my hearing aids, but I know I'll have to get used to wearing them again at some point. I was never able to use them when on phone calls, which was the only real annoying thing I found when wearing them. Like you, I'm also hoping that I don't go more or completely deaf. Most people are very understanding when I just tell them I can't hear them properly, as I can't always hear very clearly even when wearing my hearing aids.

I hope you get some good advice from your doctor and the specialists. Please update us as I'm sure this is very much a PCD-related condition. It took me a while to get used to not hearing normally and to wearing hearing aids, so keep soldiering on and I hope things get better and easier for you.

[C9RPY]

Hi. Thanks for all the replies. Just to clear a few things up - I see the PCD team at the Brompton and have been going there for many years. They referred me to an ENT specialist a few years back but he said he doesn't know why I can't hear much and can't do anything about it.

I've since seen another ENT specialist locally who said they can do the grommets but it's risky. But again doesn't know why I can't hear or why it's deteriorating. He recommended just stick with hearing aids and learn sign language.

I do get upset with these NHS hearing aids though because they squeak constantly, don't really work well unless there's zero background noise - and they make my ears sore every day. It's agony taking them in / out and my ears sometimes bleed because they are so irritated and swollen. It's started to affect my work and overall health because its so draining and annoying.

I can't risk going totally deaf though so I will just have to keep going and hope something changes. It's a shame because I would love to find out what is going on. Sadly I can't afford any private help so thats not an option. I've also asked for help from PIP because I'm so exhausted with everything nowadays - but they said I'm not eligible for anything.

Having a rough time with this PCD lately so apologies for whining a bit too much. I'll get over it soon. It's just nice to have somewhere people actually understand how hard it is at times.

[Iram_sa in reply to C9RPY]

Hello there

I just came across this message and not sure if you will see this but I wanted to perhaps suggest a few things if they haven’t been done yet?

Firstly am surprised doctors at RBH have been so dismissive about your hearing and not helping you. I am with the PCD clinic there and also see ENT (doctors at Charing Cross).

As we have mucus build up from Bronchiectasis and PCD this affects our sinuses and inner ear too. I have seen the audiologist a few times and been told I have conducive hearing loss. So my underlying hearing is ok but because of the mucus build up, having an effect on my hearing.

I too had grommets as a child and then t tubes couple of times to open up the ear drum to allow fluid to come out.

The ENT should know there is a link. Ask RBH to refer you to Miss Rennie-who is my ENT consultant at Charing Cross and attends PCD clinic too. She is good. Perhaps discuss having a clear out surgery to see if its fluid build up affecting your hearing. They will do a CT scan to find out if there is a blockage perhaps.

Finally you are entitled to PIP especially with your conditions and the fact you have been given hearing aids now. Provide all the evidence you have for your condition-and explain very clearly how this is affecting your life on a daily basis. It’s a long process but stick at it and appeal if you have to.

Wish you all the best. Take care

Iram

[martin67]

Hi I’m Martin

I have had hearing problems since I was born and I had all the grommets, hearing aids as well before

I got the born anchored hearing aid ( BAHA ) on

my right-side above my right ear and i can hear a lot better with it

[Morrison10]

Hi, any progress with hearing aids. I’m totally deaf left ear result of having experimental grommet that killed nerve. My right ear is getting bad, have NHS hearing aid that often goes dead, and regularly squeals.

[C9RPY]

Sadly not. I can only wear one of the hearing aids now as my left ear bleeds and is sore 24/7. The right one is annoying as it squeals constantly and keeps falling apart - but at least I can hear things with it in.

[Morrison10]

hi, been re-reading posts about ear and hearing aids. My aid is NHS and noticed that now when when make ear piece it’s always too big, causes pain and can’t wear it all day. Fortunately I have an old smaller one that i use, its getting old though, so will have to persuade them to make me smaller one. Hope you’re ok now with aids. Jean x

[C9RPY]

Hi Jean. I'm still on the one hearing aid but I switch between ears as they get sore & bleed if I use it for more than a few days. Not really sure what to do. I'd like to get some private ones but the cost is prohibitive.

I generally avoid going out because I can't really cope with not hearing things and the wall of noise in busy places.

I have made an effort lately though but communication is difficult. It's much easier to just stay at home on my own & not have to wear them

I hope you get some smaller ones that fit properly !

[FPolly]

Hi,

I had two sets of grommets and a T Bar op when I was a child. And my ears/hearing have always been a big big problem. To the point where when I was teach at the time, I had to leave multiple times a lesson to deal with the discharge- delightful I know. It actually highlight also just how bad my hearing had gotten as I really struggled to hear certain students.

Anyway, I started my own business which helped me feel more in control. My ears were still discharging…

My husband and I required fertility treatment and after a failed IVF I dived deeper into supplements. I was recommended CoQ10 amongst other things and I feel this was a game changer for my ears. It was either this, or the combination of other supplements I was taking. I also reduced dairy and opted for dairy alternatives which helped reduce mucous production. My hearing improved and the discharge completely cleared up and still has to this day 4 years later.

What I found that was really interesting was my hearing got increasingly worse when I was pregnant. And right at the end before I had my baby, my hearing was terrible. Really terrible. I stopped watching tv as it was on volume 100 and still wasn’t loud enough. When I had my baby, I was telling my husband to turn the volume down on volume 10! I literally couldn’t believe it!

It’s not quite as good as it was after having a baby but it’s certainly better in general, but what I do notice is again, how too much dairy affects mucous production and then impacts my hearing.

I want you to know, I’m an average girl with PCD, I was a very poorly child, have had several ops and a lobectomy, so I’m no means sharing this in a ‘showcase’ kind of way. And certainly not saying/thinking having a baby will solve all hearing problems! But I’m saying what I’ve found to have an impact and an affect on my hearing/ears via supplement and diet. And if it means that it’s helped someone just get a little bit more life out of their ears before getting a (or an additional) hearing aid then great!

Best wishes to you all!

[JasonRalston4]

I’m in my mid-40s have lost my hearing in right ear I wear hearing aids due to my pcd.

[Chrissie82]

Hi, I am so sorry to hear this, I wear hearing aids to, it sounds like your haring aid domes are too big or perhaps you have an allergy to them. My uncle had an allergy to the material the ear domes are made of and his ears used to itch and bleed, he now has domes made of something else. It might be worth looking into it, good luck xx

[PetraK]

So sorry for what you are going through.

I am still off work two months just finishing up second antibiotics that I am not sure have worked. My ears are so painful/ pressure.

I actually fainted at work... this has really affected my balance so I am on anti nausea meds. I am also not driving at the moment. They help a bit but not really resolving the problem. It is good to know that grommets are not really recommended for PCD patients. I was also told that ear problems can increase with age.

I will be speaking with my lung specialist tomorrow on the phone.

Good luck!

[Andy70 in reply to PetraK]

Hi folks, I was advised to use the NeilMed Sinus Rinse by a ENT specialist here in Dublin. I've been using it now daily for a year and it's been brilliant for me with a massive improvement to my hearing.

[PetraK]

I have been using a nettie pot as well as a steroid nasal spray. Thanks for sharing. My body just apppears to be on overload a bit.