Oncology ENT referral

[AppleOrchard]

At the end of June (25th) I started to have terrible ear ache. I tested positive for covid a couple of days later. As soon as I was negative, I went to the doctor. My ear canal was incredibly swollen. I got an antibiotic and anti fungal ear spray. It didn’t go away so I got another course of the spray. It didn’t go away so I got antibiotics and then another course.

When I was on holiday in France (early August), I had to go to the doctor. I got an iodine rinse to disinfect it and antibiotic ear drops. It still felt awful when I came home (Friday) so I went back to the doctor. The swelling has gone despite there still being intermittent pain, no hearing at all in that ear and discharge every night. The doctor said she’d refer me on to ENT.

I got an email appointment yesterday from oncology ENT. I thought it must be a mistake because the doctor didn’t mention this to me - despite me asking how long it would take to get an appointment. I’m very pleased she’s been so proactive but I’m left not know why I have been referred. My GP isn’t in until tomorrow.

In the meantime, has anyone experienced this? Could the discharge be the iodine for two weeks ago?

How likely is it to be cancer? I have been feeling really tired but think that’s my thyroid.

i hope it’s okay to post this.

thank you.

[Brightness14]

Not very likely cancer of the ear is unusual. Do you have tinnitus and how is your balance.Your ENT will do a hearing test and maybe send you for a MRI.

[AppleOrchard in reply to Brightness14]

Yes, I have tinnitus but balance is fine. I’m sure all will be well but wondered what experience people have of this kind of thing.

[Sparklingsunshine in reply to AppleOrchard]

Hi

I have ongoing balance issues so have been googling inner ear issues for some time now. I came across a condition called choleseatoma. The discharge bit is a classic symptom.,its a cyst or build up of dead cells, usually affects one near not both.

Can cause tinnitus, hearing loss, vertigo, a smelly or watery discharge from the ear and possible pain in the face as the cyst presses on facial nerves.

It's usually treated with surgery to remove it. It's not cancerous but left untreated it can be serious.

[AppleOrchard in reply to Sparklingsunshine]

Thank you for your reply. I appreciate hearing your story. Hopefully mine is something like that - something that can be fixed and I hope it’s something that will give me my hearing back. I find that really hard and the tinnitus. Thank you very much again.

[Brightness14 in reply to Sparklingsunshine]

I am going to ENT next week for tests, believe mine is a Acoustic Neuroma, I hope not.Mine is one sided and I have lost to hearing completely also tinnitus and face and eye problems. I have not heard of that condition that you mention, interesting.

[AppleOrchard in reply to Brightness14]

I have not heard of what you mention. I’ll look it up. I looked up the other one. That doesn’t sound great either.

I don’t have problems with my face / eyes / balance. So I have no idea!

I hope your appointment goes well. And you too SparklingSunshine.

[Brightness14]

I would rather not have either of these, but who knows until we are diagnosed Dr. Googlewill have to do. Keep in touch please.

[AppleOrchard in reply to Brightness14]

I feel the same. I’m absolutely exhausted too, which is not helping. I wasn’t great at taking my b complex or b 12 during the holiday so will wait to test thyroid again until I have taken them consistently for a month. Are you exhausted too? Have you an appointment yet?

[Brightness14]

I have exhaustion as well as every thing else. I have no gut or low B12 problems either. I have no thyroid but I self medicate with thyroid s which I have been doing since 2015. and feel really well too. I have never had a headache or earache in my life, no ear problems until two years ago when I had a nasty ear infection (first one ever) then just over a year ago another similar one. I then started to feel unbalanced and now no hearing in my right ear.I have an ENT appointment on the 5th September so will wait and see what happens. I live in France so no waiting for appointments. Keep you posted. I hope it's not acoustic neuroma.

but it could be, only 1 in 100,000 people have this, so rare. If it is depends on size and position as to treatment.

[Sparklingsunshine in reply to Brightness14]

Hi

From what I've read thyroid problems seem to cause an increased risk of vestibular problems. I know mine isn't infection related as I've only ever had severe earache as a child and it was a virus.. Luckily nothing as an adult.

Vestibular issues also commonly cause brain fog, and exhaustion as your brain is working overtime trying to keep you upright. Hope you get sorted soon and please keep us updated.

[AppleOrchard in reply to Sparklingsunshine]

I didn’t know that about the thyroid. It seems it’s responsible for so many different things. I have loads of brain fog as well as exhaustion. I don’t have problems with dizziness. It must be hard having that issue because our balance is key to so many things. Hopefully they will be able to tell me something on Tuesday.

[Brightness14 in reply to Sparklingsunshine]

Thank you I will, and good luck to you.

[Brightness14 in reply to Sparklingsunshine]

I forgot to mention that after reading you previous posts I see that you had an MRI a while ago which found nothing unusual. I had one back in early July which gave the same result as yours. I have read on the AN site that an MRI requires contrast to find small or even large AN's mine was without contrast what about yours.

[Sparklingsunshine in reply to Brightness14]

Hi

No I didn't have any contrast. Just found out I've got raised parathyroid levels though and am now wondering if that could be contributing to health woes.

[Brightness14]

HiI don't know much about parathyroid levels, sorry. Let me know how you get on please.

[AppleOrchard]

I had my appointment this morning. The doctor said I have an ear infection so he couldn’t see anything. I have red bumpy things on my Eustachian tube that indicates a chronic infection. I told him that when the doctor saw me on 19th August, there was no infection. He said that couldn’t be. I’m afraid I disagree with him. I think it’s become re infected in the last three or so days because the pain has started to be more consistent and sore plus my ear feels hot inside. The discharge and hearing loss didn’t ever get better and there was pain intermittently but it wasn’t too bad. The doctor dismissed it. He saw discharge in my ear. He thinks there’s a hole in the ear drum. He’s given me Sofradex drops for two weeks. If the discharge doesn’t stop, I have to take it for another two weeks and he will see me again in three months. I’m not really sure what to do.

[Brightness14]

I have only just spotted you last post, sorry. It sounds as thought you need another doctor,

is this your GP? I have had my ENT appointment and I have a massive Cholesteatoma.

I am waiting for the scan results any minute now, I was told I will have to have surgery.

In the meantime I am on ear drops, Antibiotics a Steroids for one week. Watch this space.

I have been reading up on it and apparently this occurs manly in people with ear infections from an early age. I had never had one in my life before 2019. But I have had two sinus operations which can cause this. Anyway I think you could do with otioscope to look into your ear. Let me know please how you get on.

[AppleOrchard in reply to Brightness14]

Thank you for your reply. I appreciate it.

What symptoms do you have? I’m sorry you have to have an operation. Do you know how you got it? I hope the scan results are going to be okay. What are they hoping with the ear drops?

I had loads of ear infections as a child. My left ear drum is scarred because of the perforations. It’s strange that you didn’t ever had any bother before 2019.

The discharge has stopped with the drops from the doctor (GP). The drops the ENT gave me didn’t agree with me. But I still have no hearing and lots of noise. My ear really doesn’t feel right.

This is what the letter from the ENT said:

On examination, oral cavity and oropharynx showed no pathology.

Nose and ear examinations were within normal limits.

Left ear examination showed the presence of ear discharge and granulation tissue. The tympanic membrane was not visualised. The right tympanic membrane is intact.

I don’t think the granulation is a good thing.

Thank you very much again.

[Brightness14 in reply to AppleOrchard]

Sorry I forgot the symptoms, which are balance, complete deafness in my right ear and tinnitus. I also get extremely tired, all day in fact. Sometimes I feel sick too which I have never had before. I have been getting really bad since the start of August I can only just walk into the garden, not walk the dogs, anymore. So quite sudden in some respects.

I have downloaded everything on can on this and the many types of operation, I am now studying it all. Then trying to find the best surgeon for the job, I live in Brittany.

Because I have been deaf for over a year I am used to it now and I am 76 years old. If I had to I would rather go for the surgery that completely removed the Cholesteatoma and still

leaves me deaf, these can and often do come back so a second or third op is required.

[Brightness14]

You are right the granulation is not good. Apparently two sinus operation can cause a build up, granulation in the middle ear too. My last operation was in 2012 so 10 years ago.

I have a massive cholesteatoma which was found by otioscope, just waiting to see now how much damage has been done, and surgery appointment. Just what I don't need, never mind I am used to operations now. It could be urgent as these can be very dangerous.

Please push for an otioscope examine and scan, let me know how you get on please.

[AppleOrchard in reply to Brightness14]

It sounds as though you are being dealt with very well. France is so good for most things physical. I said to my husband last night that I wish we still lived in France so it could be dealt with there. It would be much faster and more thorough.

When I went to the doctor in France in the summer, she said that this should be the last treatment and that if it doesn’t clear up, I should have a scan. The ENT doctor said that the treatment given wasn’t for long enough and that’s why it didn’t clear up.

Your symptoms sound pretty severe. It must be really hard not to be able to get out much because of the problems with your balance. I hope there isn’t too much damage and that you’re operated on soon. Waiting for these things is not pleasant.

What is an otioscope? I’m assuming it’s some kind of ear scan. The doctor (ENT) is just treating it like a recurring infection. It could be that, of course, but it could be other things.

I’m finding it quite hard being deaf, and all the noise is horrible. I don’t have any problems with my balance or my face so perhaps it’s not that. My discharge has almost stopped with the drops. Hopefully it’ll stay that way. My follow up is not for three months. It’s so slow.

Thank you for your replies.

[Brightness14]

I did have a nasty discharge the first time I had an ear infection but that cleared up. It was only after about another 15 months that I went deaf. When I lived in the UK and my thyroid lump had caused my trachea to move I was just left for nearly two years. I then moved to France and within a few months was operated on by a professor in Poitier CHU Hospital. My face problem only started this August but my balance was when I went deaf. The name of the procedure is Otoscopy I was muddled up with French and English. You just sit in a chair and they put a camera into your ear which relays it to a huge screen. Very simple and not at all painful. My Consultation cost was 19 euros including the otoscopy procedure and then my other Scan was free. The scan is like a mini MRI if you have had one.

I have been doing lots of research on this Cholesteatoma and now know much more about them. They are fast growing and can munch through the three ear bones and the mastroid bone and then it gets dangerous.

I am sorry that you have to wait for your appointment. Could you go privately to have a otoscopy and scan. It's expensive in the UK I know. Keep in touch I will let you know what happens.

[AppleOrchard in reply to Brightness14]

It sounds as though it’s been a really long time getting to the point you’re at now. It’s strange that it all cleared up and then suddenly 15 months later you went deaf.

I think the medical system in the UK could do with an overhaul. I wouldn’t mind paying towards it as you do in France. I think it would improve hugely if people did contribute. But there would be outrage if that was suggested here. I know that if I was in France, I’d have a scan no problem at all. The doctor I saw in the summer said that the next step should be a scan. I presume you have a mutuelle? I think that’s what it’s called. It’s six years since I lived in France.

I can’t believe you were just left here for two years with no medical intervention. At least you were treated efficiently once you were in France. And hopefully it’s the same with your ear. And if you can get your hearing back, that would be wonderful.

I have tried calling the ENT department three times. I have not had a reply. I stopped taking the drops yesterday. The discharge has stopped but I’m still deaf and have the noise in my ear. It definitely doesn’t feel right. The ENT suggested I wait three months for it to ‘settle down’ and come back. I don’t want to do that! If possible, I want to save my hearing.

[Brightness14]

My answer got lost somehow I pressed the wrong key. Anyway my thyroid wasn't the first time I was mistreated, I lost the sight in my right eye too, because of the GP. Anyway I am happy to live here in France, without I a mutuelle. I trained as an accountant when I left school and worked it out that it would save money not having one. I have been here for seven years now and the costs have been few. I am 76 years old now so not too worried about my lack of hearing in one ear. If you are worried why not go for a private scan. It depends on whether or not you can afford it. I am not into clothes or holidays at all so I used the money to pay for private treatment. Let me know what you work out please.

[AppleOrchard in reply to Brightness14]

I am definitely going to keep phoning. If I don't hear anything by Friday, I might go in and stay there until they deal with my enquiry. Failing all of that, I will go private for a consultation and then do any treatment or tests through the NHS - and hope that is possible. I don't think we could afford the treatment via private because we are about to do work on the house that we have been saving for.

How terrible that you lost the sight in your right eye. I can't understand how that sort of thing can happen these days. It is horrible that you were treated so badly.

I will keep you posted. Please keep me posted about your treatment too.

[Brightness14]

Keep at it good luck.

[AppleOrchard in reply to Brightness14]

Thank you!

[AppleOrchard]

Update:

I had an appointment with another ENT specialist a few weeks ago and was told I need grommets, and the fluid behind my ear drum drained.

Yesterday I went in for my op. When I woke up I was told that they didn’t put the grommets in because that’s not what the issue is. There was no fluid behind the ear drum.

I have a Cholesteatoma. It’s going to require surgery to remove it.

I need a CT scan to see how far back it goes. When they looked “round the corner of the ear drum” they couldn’t see how far back it went. I’m not sure what that means.

After I have had the CT scan, they will know how to proceed. The scan will be within the next six to eight weeks and the surgery will be within six months. I was told the surgery isn’t urgent.

My ear drum has retracted and been ‘sucked up and back into the ear’. It will be reconstructed (hopefully) at the same time.

I’m so disappointed that the saga goes on. And I’m not really sure what it all means!