An ENT Doctor with Tinnitus

[brownbear]

I developed a sudden hearing loss in my left ear 9 weeks ago. The working diagnosis is cochlear hydrops. I had oral and intratympanic steroids early and tried HBOT but it seemed to make things worse. The steroids definitely seemed to help my hearing which has thankfully improved. However the severe accompanying tinnitus has hit me like a freight train and is little better. I have had a great deal of support from my colleagues and family which has been great. I would be very happy to share my experiences. I am an ENT surgeon, in fact my area of expertise is Otology, so this is all a bit too close to home!

 

[Reinier]

Am I the first person to welcome you? Welcome.
I am sure many visitors of this forum would like to "pick your brain".
It is always sad that another person suffers from tinnitus or hearing problems.

I found support on this forum. I hope you will too.
I hope that your tinnitus will go away or you will habituate soon.

 

[brownbear]

Thank you Reinier.

Having looked at a few posts by people at the start of their tinnitus I think it is safe to say that I have had a very similar experience regarding my sleep, mood, wellbeing etc. It is a very difficult time. I still have flashbacks to July when my colleague told me their was no wax to remove in my blocked, noise filled ear! What a journey this is.

 

[Reinier]

Having looked at a few posts by people at the start of their tinnitus I think it is safe to say that I have had a very similar experience regarding my sleep, mood, wellbeing etc. It is a very difficult time.

I agree.
I also recognise a lot other people are experiencing. In ways we al are not so different after all.
For me it is more than 16 months ago. My moods are still very "dynamic", but in general low. But I do not want to discourage you, although like you said you already read some posts.
But visiting this forum helps me in ways I did not envisage.
This is my first forum ever. I was not a "forum person" at all.

 

[InfiniteLoop]

My ENT doctor has T and wears a hearing aid. He seems well adjusted to life. It is puzzling to live in times when techonology is advancing so quickly, but T treatments are no more effective or any better than what it was available two thousand years ago. There is NOTHING that can be done or will work consistently. The Tinnitus Talks has thousands of messages just about people suffering and just a few random success stories. Doctor Brownbear, welcome to a world where the only solution is to release your mind from the awful reality.

 

[MikeL1972]

My ENT doctor has T and wears a hearing aid. He seems well adjusted to life. It is puzzling to live in times when techonology is advancing so quickly, but T treatments are no more effective or any better than what it was available two thousand years ago. There is NOTHING that can be done or will work consistently. The Tinnitus Talks has thousands of messages just about people suffering and just a few random success stories. Doctor Brownbear, welcome to a world where the only solution is to release your mind from the awful reality.

Tinnitus is not the end of the world. How about the poor people who suffer from Muscular Dystrophy for example? Jerry Lewis MC'ed a telethon every Labor Day for over 50 years and there is *still* no cure for it.

 

[brownbear]

Hi InfiniteLoop,

I think you are right in many respects. However, certainly from my clinical experience there are many people for which there is a reversible cause for their tinnitus. There are also those where treating the cause should help and for some reason it doesn't, and of course those where the cause is unclear. Most patients I see do habituate or their tinnitus goes, so I do think that you are likely to see a misrepresentation of outcomes online.

Having said that I am struggling to find optimism in myself! The only time feel better at the moment is when I am operating as I am totally absorbed in the procedure and it is a noisy environment. Guess I will just have to do more operating!

 

[brownbear]

To MikeL1972. I agree. I try to tell myself that a lot - but it only works up to a point.....

 

[glynis]

Welcome to Tinnitus Talk Brownbear.
The unwanted feelings with tinnitus will pass over time and you will learn how to handle spikes.
Being kind to yourself and some nice treats and keeping busy helps.
Do things that make you happy but know we have to put in more effort to keep our smile and laugher as it's so easy let our mood dip with tinnitus.
You do a fantastic job and hope your ears get to give you better days too....lots of love glynis

 

[InfiniteLoop]

Tinnitus is not the end of the world, it is a life changing event. Also, tinnitus can range from a tiny sound that can be barely heard in bed, to a roaring jet reactor inside your head. I am tired of people with mild tinnitus saying that this is not a problem to people with catastrophic tinnitus. In my case, my T ranges anywhere between 1 and 9 during the same day. I am right now at a crowded coffee shop, and my T is above any sound by many dB. It is not the end of the world, it just covers the world with a very thick layer of ugliness.

 

[brownbear]

It really has changed me in the last 9 weeks. Everything is tainted by it (understatement). I too have quite a lot of variability in the volume, but it is mostly well above traffic noise/being in the car etc.

 

[Zug]

I developed a sudden hearing loss in my left ear 9 weeks ago. The working diagnosis is cochlear hydrops. I had oral and intratympanic steroids early and tried HBOT but it seemed to make things worse. The steroids definitely seemed to help my hearing which has thankfully improved. However the severe accompanying tinnitus has hit me like a freight train and is little better. I have had a great deal of support from my colleagues and family which has been great. I would be very happy to share my experiences. I am an ENT surgeon, in fact my area of expertise is Otology, so this is all a bit too close to home!

I don't know if "Welcome" is the best word here... But anyway, sorry this has happened to you. There's some pretty good information and help in this Forum. Just try not to get too scared about some of the bad stuff. I think my biggest mistake when I first developed Tinnitus a little over a year ago was to go on and try to "Get Better". It takes time, so keep that in mind.

Nowadays, I get maybe 4 or 5 bad days in a month, the same amount of good days, where the sound may be there but it doesn't bothers me that much, and in the balance I get good moments when it hardly bothers me and I couldn't give a frack, intersected with some bothering moments. I know people who had it for longer and say it keeps improving, so I just keep trying to move forward one step at a time.

Do stuff that can take your mind off T, even if for a while. I kept up with several series on Netflix, better to watch "Strange Things" than stay alone in a corner fearing the worst.

Best,
Zug

 

[brownbear]

I loved Stranger Things!

Thank you for the support

 

[brownbear]

Thank you glynis, that's very kind. I have really noticed how my mood can change for the worse so quickly right now, often only moments after feeling I can manage.

 

[Candy]

@brownbear it's a journey and a quite an experience, I've had mine since the first week of June, my mood has improved over all but there are still difficult moments, the kids and work keep me busy. My mood predictably changes according to volume.
Good to have u on board, here in the UK after the MRI you wouldn't get any other tests but I think we owe it to ourselves to work out the possible medical causes. Then move on to habituation...thanks for posting, and one day at a time.

 

[Zug]

I loved Stranger Things!

Thank you for the support

It took me several months to bring myself to read a book, but if you can, "When breath becomes air" helped me a lot. The author was a surgeon, about my age, who was diagnosed with terminal cancer. Made me realize that if other people can face much more aggressive conditions, I could live with T. Here's a link to a short article he wrote before the book:

http://stanmed.stanford.edu/2015spring/before-i-go.html

 

[Michael Leigh]

nnitus is not the end of the world. How about the poor people who suffer from Muscular Dystrophy for example? Jerry Lewis MC'ed a telethon every Labor Day for over 50 years and there is *still* no cure for it.

@MikeL1972 You have never suffered from loud intrusive tinnitus sustained for a length of time, otherwise you might have thought twice before coming out with the above statement. In my opinion, tinnitus can be just as severe and debilitating as any other medical condition, simply because of what it's able to do to a person's state of mind. One only has to type tinnitus into any search engine to see what a person is capable of doing when this condition is severe and intrusive. Just because tinnitus cannot be seen like a physical disability, or its severity cannot be measured on any medical equipment, doesn't mean a person cannot be suffering when it's severe; otherwise, there would be no need for this forum.

 

[Stakovic]

@brownbear live with it as you say to your patients

 

[brownbear]

@Stakovic - your message brought I smile to my face! But I promise I have NEVER said that to anyone.

 

[Stakovic]

@Stakovic - your message brought I smile to my face! But I promise I have NEVER said that to anyone.

I have had this shit since 1998 and the most of Ent that I have seen told me go home and live with it ,I hope that you will tell to your colleauge don't say to your patient LIVE WITH IT

 

[brownbear]

@Stakovic - Agreed, I think this is a seriously damaging thing to say to people.

 

[Foncky]

Hi brownbear, keep going.

You'll certainly be able to answer many questions TT members have about hearing matters, if you want to. Like cochlear hydrops ! I was told I may have that, but I had no further explanation.

Do you think having T will change something in your practice as a doctor ? (even if you're a surgeon and T is not directly your field)

 

[brownbear]

Hi Foncky. I hope I have always been sympathetic to patients with tinnitus as I see the distress it causes every week of my life. I do think that experiencing it will change me professionally however. I am in such a fog at the moment that I am not sure how it will manifest itself, but i would like to see something positive come from this.

Regarding cochlear hydrops - I am not an expert (who is?!) and it seems to me to be a difficult diagnosis to make as some of the symptoms overlap considerably with much more common diagnoses like eustachian tube dysfunction. In my view the characteristics of cochlear hydrops would be aural fullness, tinnitus and hearing loss (usually low frequency). It can come and go much like Meniere's, but without vertigo. If we make the assumption that it is on a spectrum with Meniere's, then it makes sense to try to treat it similarly to Meniere's (i.e low salt, no caffeine, betahistine). I should say though that the medical evidence for a lot of this is quite weak from my reading.

 

[brownbear]

P.S I think all ENT surgeons should be able to council patients properly regarding tinnitus, even if it is not their area of special interest. It is too common a condition not to, and we are the first port of call for patients.

 

[MikeP505]

@brownbear

Sorry to hear about the onset of your tinnitus. This is an ugly condition for anyone, mild or serious. Much research is in the works and hopefully in time there may be a treatment that will help most of us.

I had mild tinnitus that started in 2005. Mostly from my musical performances and lack of proper hearing protection. In early 2011 I was beginning to feel ill for some reason. Went to see my GP and had bloodwork and physical examinations etc. No markers in the blood and no real cause detected for my fatigue. Was given a B-12 shot. The next month I was gradually getting more tired and weak. Returned to my GP and given an antibiotic for whatever reason? Still days and months passed and I'm very weak now. To the point I stopped working and seeking help at hospitals. Bloodwork comes back normal and given useless meds for what ever. FINALLY got to the point I needed help to get to the hospital. They found my body in much distress. Did an EKG and bloodwork and xrays. Bloodwork finally came back that lead the attending physician to order a CT on my kidneys. I told the physician I only had one kidney (L) and the other one was damaged in an accident when I was very young. Sure enough my left kidney was blocked from so many large stones it was no longer working. I was literally being poisoned by my own body. Had emergency surgery (keyhole thru the back) to remove the boulders and sent home to recover after one night stay. The next morning I wake up and my ears are plugged and tinnitus is screaming loud. I'm sure it's just wax right? But a soft bulb and was drops for ears and did as instructed. Used the drops, 6 hours later a warm water flush in each ear with a soft bulb and NO WAX! I freaked!

What I learned is they may have used a (slow push) medication that they give to patience with renal failure. If they push this in too fast, it has been known to damage hearing etc.

So today, 3 years later, I am now completely deaf, super high pitched screech in each ear from tinnitus and my life did a complete 360 from what it once was. I hate to say it but, I wish EVERY ENT suffered even mild tinnitus and or hearing loss. They sure would understand what we are going thru much better.

This noise is nasty, debilitating at times, and add in deafness can cause you to be out of work and live in complete poverty. This takes place all over night for some of us. Yesterday was living a normal life, working making a good living, today living in poverty and sheltered from the world. Can't even pay rent so must live in shared accommodations. Sleep patters are horrible. Future looks dim. Most ENT's cannot even grasp the real effects on us.

 

[brownbear]

There are many medical problems that people have unquestioning sympathy for such as cancer, stroke etc. A person does not need to have direct experience of those things to be sympathetic. It would be good if health professionals (and the general public for that matter) could reach that point with their understanding of tinnitus (without having to actually have it!).

 

[rid0871]

hello brownbear
I have been too 6 ENTs all shrugging there shoulders. overing no help at all. mt T and H started May 2015 when my neck was adjusted, i have had some many scans and it shows nothing. My buzzing, sizzling, ringing is so very LOUD I can hear it over anything. what i dont understand and know one can explain is why the off balance or the fact that i cant watch tv as the motion makes my eyes not keep up.

 

[Marie79]

I'm so sorry you are going through all of this. Stress and anxiety make T worse.

 

[GregCA]

@Stakovic - Agreed, I think this is a seriously damaging thing to say to people.

Try "you'll get used to it" or "just don't think about it" or "run a fan at night" or "go on with your life, pretend it's not there"... all of this without having a clue how it impacts you (its severity).
Your profession needs a real kick in the butt to understand this condition better (if not to treat it better). It's sad that you'd have to get it to understand it, and I certainly am not happy that you were among the "chosen ones". I don't wish this on anyone.

But since you are a live example of an ENT surgeon who got T, I'd love to get an idea of what your understanding of tinnitus was prior to your getting it. Did you think your T patients were experiencing what you are experiencing right now, in terms of sensation, severity, despair, etc?

I'm neither an ENT nor a surgeon, and while I knew what tinnitus was, I certainly didn't think of it in terms of such severity and life impact. I basically thought I was experiencing it the handful of times I went to a loud party when I was young and came back with "sore ears" until the morning. How wrong I was!

Do you have any thoughts/ideas on how to educate your fellow ENT doctors better? (not blowing a horn directly in their ears of course)

 

[GregCA]

There are many medical problems that people have unquestioning sympathy for such as cancer, stroke etc. A person does not need to have direct experience of those things to be sympathetic.

You will find (maybe the hard way) that tinnitus is a bit special in that regard: it's completely invisible, and hence draws very little sympathy.
The friends/acquaintances I meet keep telling me "you look great!" - they have no clue what's going on in my head, and offer no sympathy (because they don't "see it").
They think everything's ok.

When you tell them what you have, even then the sympathy is limited because nobody really knows what tinnitus is until they experience it. They think it's the "ear soreness" after a party. So they think it's no big deal.