Bad ENT Appointment — Are My Eardrum Perforation and Tinnitus Permanent?

So after 6 months of living with an eardrum perforation and 3 months of waiting to see an ENT, I finally had my appointment. I received no advice and no hope.

He basically told me that patching up the perforation was too risky and that I should live with the perforation if I could - but he can book me in for surgery if I want. How am I supposed to live with a hole in my eardrum forever?

I asked if there’s any chance of it healing in its own or anything I can do to promote the healing, he said no.

I highlighted tinnitus multiple times. He said there’s nothing I can do about it. Even surgery might not fix it because we don’t know a cause. Which makes no sense because the tinnitus developed in the ear with a perforation, seems obvious to me.

Oh and they did a hearing test and I have hearing loss on that ear.

I’m so disheartened and heartbroken. I was given no advice no hope and I don’t know what to do.
Surely there’s some other way to heal the perforation? There must be something I can do.

 

Yes, there is something you can do: change doctors.
Ask the (new) doctor for risk data and make your own assessment. The doctor can make a recommendation, but you are ultimately the one making the decision to go through with surgery or not. I've gotten some myringoplasty risk data from my own surgeon for my daughter's surgery and went through it.

There is always a risk (that part is true), but you need to get an exact break down to be able to make your assessment.
If possible, talk to your potential surgeon to get his own personal stats for such surgery (they vary by surgeon, obviously).

The other question you need to ask your doc is: "what is the downside of not repairing my ear drum?" - and s/he should bring up risks of infection, tell you that you should be careful about water going in there when you shower, swim, etc. It's not like leaving it as is is risk free either, in addition to causing conductive hearing losses.

Where I agree with your doc is that you shouldn't expect that repairing your ear drum is going to fix your tinnitus.

I don't mean to swing you one way or the other: I'm just suggesting that you get all the data, and that you feel empowered to make your decision.

 

Go to a PRP clinic and ask them to let you hold the vial of the PRP they make from your blood and then run away with it and drip it into your ear canal.

https://www.ncbi.nlm.nih.gov/pubmed/18954495

 

I can understand how disheartened you feel @Yas but this is your ENT doctor's area of expertise. If he has advised carrying out a procedure is risky he must know what he's talking about.

A lot of people with tinnitus, do not fully understand the role of an ENT doctor once tests are carried out and they meet afterwards for a consultation. ENT doctors do not usually treat tinnitus, they treat the underlying medical problem within the auditory system that is causing the tinnitus. This could be: Meniere's disease, Osteosclerosis, ETD, Acoustic neuroma, to name a few. If a problem is found they will try to treat it medically or surgically. If the tinnitus is noise induced, in the UK the patient is normally referred to Audiology, to see a Hearing Therapist or Audilogist that specialises in Tinnitus and Hyperacusis treatment and managment. There are usually various treatments options if available which can include: counselling, sound therapy, CBT, TRT, Mindfulness.

Since your doctor is unable to do anything it might be a good idea to see if you can get referred to Audiology.

All the best
Michael

 

BA!!!!!

@Yas go get a second opinion.

 

There is no need to get a second opinion. This is the UK, not USA. By this I mean our NHS works differently. It may be possible but not as straightforward as you might think.

 

I agree. ALWAYS get a second opinion (even a third or more).

NEVER trust one person's opinion. This is YOUR health, not theirs.
There is no reason you shouldn't be able to get a second opinion in the UK.

 

I didn't say it wasn't possible but not as straightforward as some people might believe. The ear is a very delicate organ. The ENT doctor has already said it is risky operating, I wouldn't want to take that risk and possibly become deaf or the tinnitus getting worse.

 

Because every ENT is exactly the same.

 

Not all ENTs are the same. Some are mediocre to the point of being negligent, whilst others may be brilliant (idk...I've only dealt with mediocre ones). They are people after all. Definitely get a second opinion.

 

Seriously? I mean, seriously? I mean, what?

 

@JohnAdams

There is little point in me pursuing this matter with you, as you're determined to make this into a slanging match which is your usual modus operandi. You show no manners or respect for anyone, so you're rightful place is MPP, where you can argue quite happily all day long about TRT, CBT and condemn ENT doctors and other health professionals with the rest of the troublemakers that frequent there. I think the Administrator of this forum got it right when he mentioned, onlookers must think certain members behave like hooligans, although no names were mentioned.

You haven't quoted my sentence correctly or taken note of what I have said. ENT doctors in the UK at least, do not treat tinnitus, they treat underlying medical problems within the auditory system that is causing it. If no problems are found and I have given examples. Then the patient is usually referred to Audiology to see the health professionals I have mentioned, for tinnitus and hyperacusis treatment and management. I have gone further and relayed that the ENT doctor who is a medical professional, has advised operating although possible is risky. I deduce from this, that operating could make the tinnitus worse or seriously impair hearing. The ear is a very delicate organ, this is the reason most ENT doctors like to leave a period of time before investigating further when a patient complains of tinnitus as it can often improve or completely go away after 4 to 6months.

I didn't understand this 23 years ago when I first got tinnitus and waited 6 months until I was seen at ENT for my first appointment. I now know this is the right procedure as long as there aren't additional problems such as: deafness, dizziness, balance problems or acute pain in the ears. If a person has these then they are usually fast tracked to ENT for tests.

The way you behave in this forum and the language often used is deplorable. The blatant disrespect you have for ENT doctors is quiet apparent. I assure you of one thing, if you showed any disrespect or impoliteness towards an ENT Doctor or other health professional on this side of the pond, you would not get very far. I have seen quite a few health professionals and ENT doctors in the twenty three years I have been an out-patient at Audiology and ENT and I have never had a problem except with one Hearing Therapist, that was quite rude and abrupt. The matter was dealt with swiftly and I never saw her again. She was later dismissed by the hospital as other patients complained about her behaviour.

I will not be commenting further.
Good day and I wish you well.

Michael

 

TL;DR

 

I would get a second opinion about this. Also your ENT has spoken about the surgery being possible but "too risky". It's very important that you get more information about this - what are the risks precisely and can the surgeon quantify them in terms of percentage possibility? Ultimately it should be your decision but you need to have more information about the risks. It's quite likely that the surgery won't of itself solve your issues with tinnitus but you do need to find out more and get a second opinion.

 

Thank you for responding, I have been booked in to see a private ENT on Jan the 2nd. As much as I trust and believe the first ENT, I have hope that there must be more I can do.

 

Thank you Michael. I for sure trust the ENT that I saw yesterday, but I would love to have received some more information, some more hope at least addressing the perforation. This is the only reason I have booked to see a second ent!

 

I asked about the risks- for surgery, 20% failure rate 80% success rate (in my opinion is WAY too low). 1/1000 chance of facial paralysis, and chance of hearing loss. It just doesn’t seem worth the risks for me, I want to seek another way to heal!!

 

@Yas

You are welcome Yas. From what you have described you are quite within your rights to ask for a second opinion and I'm sure you will get it. Keep in mind that if ENT believe nothing can be done regarding the perforation, there's still the possibility that Audiology may be able to help you with tinnitus treatment and management.

All the best
Michael

 

Remember though, that doesn't mean that the first ENT was wrong and the second one will be right. But still worth getting a second opinion. Private doesn't always mean better though.

 

@Yas

I thought it was an NHS ENT doctor you are going to see you for a second opinion. Having read @all to gain post I gather you are seeing a Private ENT doctor? I wish I had known you were doing to do this beforehand, as I would have advised you not to go this route.

Best of luck
Michael

 

I don't know of any other way to resolve a drum perforation. I've looked into it for my own daughter. The stats you got are a bit on the lower side, I think. https://www.earsurgery.org/surgery/tympanoplasty-surgery/ talks about a 90% success rate, which is more in line with my surgeon's disclosure.

Unfortunately, you also need to think about the risks of "not going through with it" (my wife and I had the same dilemma in front of us a few months ago). Other than the specific care about not getting water into the ear (showers, baths, swimming, etc) or other compounds, you need to consider the risk of cholesteatoma, which would likely require a potentially riskier surgery.

https://www.marshfieldclinic.org/specialties/ent/eardrum-perforation

Not an easy decision, I admit.
Good luck!

 

My first ent was an NHS ent, I also have another NHS ent appointment in late February but in the meantime I wanted some more advice. What are your reasons for no private ent?

 

If all you want is advice from a Private ENT doctor then that is fine. You will get the best treatment and long term aftercare for your tinnitus under the NHS that no private practice in the UK can match. I was told this 23 years ago by my GP and I have found that to be true. I have been an out-patient for 23 years and seen many times in ENT and Audiology for tests and renewal of white noise generators whenever required. Tinnitus can be a long term problem/condition for some people as in my case. One needs good support and aftercare.

Best of luck
Michael

 

I think you are right to seek a second opinion and I see no problems at all with that second opinion being from private practice. My own personal experience is that after first getting tinnitus I saw both a private ENT consultant and an NHS ENT consultant. The private consultant was a great deal more helpful than the NHS one. The experiences of Michael Leigh are more the exception than the rule as you will see if you look through other posts on the forum. However, I don't think it's a simple as either private or NHS always being better - it's worth getting advice from both.

 

Hi - please do not lose hope, @Yas

Please go get another opinion. And if that next doctor tells you something you don’t want to hear, find another one. Admittedly, I have no idea how the UK’s medical system works, but I know that a different doctor may very well have a different point of view on your experience. You need to be your own advocate. Go to another country.

Maybe this is a very American point of view, and I have a reputation for being the pushiest of them all, but my advice is to start calling the shots, and make something happen if you want it to happen. Don’t like the answer? Find a better answer. Curate your medical care.

 

That makes a lot of sense. After seeing this private ent, if he suggests surgery and risks are slightly lower, I will try to get the surgery with him through the nhs (he’s also an nhs ent).

 

Yes for sure! I’m hoping I get some good advice this time!

 

Yes you’re so right. I’ve spent the past few months focusing on my ears. When will this all end.

 

@Yas

You and me both. I’ve lost so much time over tinnitus. I’m trying to pour myself into work, friends and staying the course on the recovery plan I’ve made. At the end of the day, we may just need time to heal, and there’s not a damn thing I can do to stop the passage of that.

You have this perforation in your ear. It is not at all crazy to seek more information on how to close it. I say give yourself the day to feel bad, and then move on to the next person or resource that may bring a different point of view to your situation.

I’m giving you the same advice I’m giving myself today - I have a weird new tone in my right ear that feels like a major setback. I’m going to feel badly for myself today. I’m going to take precisely one Ativan and sleep a lot tonight. Then tomorrow I’m going to wake up and force myself to find a way to keep moving forward.

C’mon let’s figure this out.

 

I’m tired of it, it’s like no matter how much I rest, I’m still so exhausted. But we need to keep pushing through.
I’m so sorry to hear about your setback. You can get through this and hopefully it’s just a short temporary spike. Best of luck to you. We have got this!!