Suggestions for Good ENT Departments for Tinnitus in London?

[Chinmoku]

Quick question: does anyone in London or UK have good experiences with a particular ENT department in a London hospital for tinnitus treatment?

I would like to have a new referral and will discuss with my GP, but I'd like to have an idea of where I could go.

I saw that the Royal ENT hospital is at UCLH, so perhaps that's a good choice? I wouldn't want to end up with a ENT department where they simply test my hearing up to 8000 Hz and then tell me there is nothing they can do or just advise to do CBT.

I'm ok with doing CBT but would like to have a deeper ENT investigation before giving up the medical side. I would also like to be tested for tinnitus matching, speech recognition difficulties etc.

Thanks in advance.

 

[Ken219]

@Chinmoku I can tell you from experience those two words don't belong together 'good ENT'

 

[Chinmoku]

Getting back to this post to see if there is any further advice?

The team that is treating me is well meaning but they essentially gave up on me and are pushing me to be treated by mental health doctors/therapists. I don't have a mental health problem, or let's say there is a component of that possibly, but the problem is the tinnitus. Reduce the tinnitus and a lot of my stress/anxiety/depression would go away. The other way around is not working too well, I can do all the psychotherapy in the world but as tinnitus keeps worsening and being intrusive I fall into bad mood over and over again. I need to keep the ENT path alive. @Candy, @mcfly_2019, and all other people from London, any suggestions on particular ENTs, Neurologists or tinnitus specialists you had good experience with? I had all standard hearing tests, Cochleography, Otoacustic emissions, a bunch of balance tests, an MRI, I tried steroids in the early days, SERC, antiviral medication, antibiotics... all in vain. Sound therapy does not work. Acoustic neuromodulation is not good for me because my tinnitus is not on a bounded band, is high frequency on a broad band and there is no upper frequency where it ends.
I am on month 11 and the tinnitus has been worsening. I am on a drug called pregabalin. I tried to taper down but couldn't get to zero as the tinnitus became totally incapacitating and I had to increase the medication again. The drug calms me down but I don't know the effects it's having on me. All doctors said it should not be causing or worsening the tinnitus but who knows. It is in some lists of ototoxic medications.

The tinnitus clinic in London seems to offer mostly sound therapies and devices like LEVO that are not that effective for me, and they mostly rely on an audiologist, with an ENT supporting the team. The tinnitus treatment center seems to offer mostly TRT, CBT and the Parasym device. I need primarily a ENT or perhaps a neurologist to understand why my tinnitus keeps worsening, but the ones I talked to so far basically gave up on me. The neurologist didn't even run tests on me and said it was anxiety.

I applied to Lenire but I am not sure when they will get back to me as I ended up in the big 2020 pool.

I could try Neurofeedback, TMS, stem cells... but I don't have infinite resources, I am exhausted, and I don't want to risk making things worse. I need to improve or at the very least to stop the worsening but I don't know what to do next. Any suggestions on tinnitus experts/centers in London, and if not in London in the EU?

Thanks in advance.

 

[Chinmoku]

@Chinmoku I can tell you from experience those two words don't belong together 'good ENT'

I should have written Otologist, maybe! But I suspect you might have the same answer.

I just posted an update and a few more questions above but the thread wasn't bumped, wondering why?

EDIT now it has been bumped, perhaps it wasn't because I had not quoted your reply.

 

[jay777]

@Chinmoku

Have you tried getting on the REGAIN study?

https://www.regainyourhearing.eu/

 

[spinnaker]

@Chinmoku I can tell you from experience those two words don't belong together 'good ENT'

LOL. Why I never went on a regular basis. Looking back I wish I would have at least seen an audiologist just to have track of my hearing.

But every time I have been to an ENT, I have not been impressed.

Saw one recently dues to a feeling of fullness in my left ear. She said it could be inflammation and could be Meniere's disease. Well I have no symptoms of Meniere's disease other than maybe the feeling of pressure. She put me on a regiment of steroids for the "inflammation". No improvement after about a week following her instructions for low salt and no caffeine (both good things) but also no chocolate which is one of the things that keep me sane.

So not feeling well, I went back for a second opinion from her colleague (big mistake), The guy was a total ass. He of course agreed with her findings.

My audiogram showed poor hearing on both ears, especially the left. So I decided to google it, hearing loss and fullness. Guess what? Hearing loss can cause the sensation like your ear is blocked! They NEVER mentioned this to me.

But I also think something else is going on that they would not listen to me. I have had rhinitis for as long as I can remember. It stopped right around the when this fullness started. The doctor just dismissed it and said I must have grown out of it. Today, the fullness was starting to bother me again. Just had dinner and my nose ran a bit. I blew my nose and boom the feeling was gone!

They think they know everything but they really don't.

 

[Chinmoku]

I should have written Otologist, maybe! But I suspect you might have the same answer.

I just posted an update and a few more questions above but the thread wasn't bumped, wondering why?

EDIT now it has been bumped, perhaps it wasn't because I had not quoted your reply.

@Chinmoku

Have you tried getting on the REGAIN study?

https://www.regainyourhearing.eu/

I thought about it but they have a line saying that if your tinnitus bothers you more than your hearing loss then you are not suited.

 

[Michael Leigh]

Quick question: does anyone in London or UK have good experiences with a particular ENT department in a London hospital for tinnitus treatment?

@Chinmoku

Although tinnitus can appear out of the blue there is usually a reason for it. Please send me a PM and I will recommend a hospital to you in London.

Michael

 

[Michael Leigh]

@Chinmoku

I do understand how you feel for I have had tinnitus for many years. As I have said something usually causes it's onset. If your tinnitus was not "Noise induced" and ENT haven't found an underlying medical problem causing it and you have been referred to Audiology for treatment which is the right thing to do. Whatever treatment you have had at Audiology if it's not helping and there could be various reasons for this. They will recommend referral to mental health doctors.

I advise you not to pursue going private because it cannot match the treatment that NHS can provide I assure you. All they will do is extract as much money as possible from your account and when you run out of cash they will not want to know! Accept whatever help is available on the NHS there is none better in the UK I promise you. If you want to try something like Neuromond then do so when you think it's right, as It might be of help.

Michael

 

[Chinmoku]

Thank you @Michael Leigh .
I have been treated by ENT and Audiology but the tinnitus has not improved, it kept worsening. They basically gave me hearing aids with white noise but then gave up on me. The hearing aids make my tinnitus react, I tried to use them but they don't work well. Also the frequency of my tinnitus is very high but everything stops at 8khz with ents and audiology.
My case is complicated by a medication called pregabalin. We don't know if it is helping or harming me. Doctors are uncertain but in my current state I can't get off it.
What I was looking for was a team with exceptional expertise in tinnitus. In the hospitals I visited they know the standard approach but it looks like they don't know how to handle the difficult non-responsive cases. I fear the tinnitus expertise I'm looking for does not exist sadly, but I would like to try again, there are many hospitals in London. I wouldn't want to restart the referral from scratch but rather move to the next level if this exists anywhere.

 

[Michael Leigh]

I wouldn't want to restart the referral from scratch but rather move to the next level if this exists anywhere.

@Chinmoku

I agree with you and don't think that it will be beneficial to get another referral. Until there is a therapy, device or medication that can completely cure tinnitus, most people will have to learn to live with it which is known has habituation. At the moment treatments that can help with this process are: medication, sound therapy, counselling. All of these come in various forms.

Whether a person is able to get one or a combination of the treatments above ultimately it is about the individual. Tinnitus is largely about self help and learning to have a positive outlook on life even in the downtimes. Not allowing negativity to take hold as this can be detrimental to the healing and habituation process. Continue getting whatever treatment is offered to you on the NHS.

I wish you well.
Michael

 

[Chinmoku]

They think they know everything but they really don't.

Some are like that, indeed, but fortunately there are others who are humbler and admit they don't really know much about this condition and how to treat it, apart from the standard things that often don't work for difficult cases. Sorry to hear you have been suffering such a long time. I hope the cure finally arrives in the next few years.

 

[Chinmoku]

@Chinmoku

Have you tried getting on the REGAIN study?

https://www.regainyourhearing.eu/

Just checking if anyone else has any suggestions? Would like to try one more appointment before giving up, but I am oriented to a neuro-otologist or oto-neurologist, someone who may also be familiar with neurology and related medications. Anyone had good experiences? In case anyone has a good suggestion in London or UK more generally please let me know. Thanks in advance.

 

[volterra]

Just checking if anyone else has any suggestions? Would like to try one more appointment before giving up, but I am oriented to a neuro-otologist or oto-neurologist, someone who may also be familiar with neurology and related medications. Anyone had good experiences? In case anyone has a good suggestion in London or UK more generally please let me know. Thanks in advance.

Did you find anything in the end? I'm also in London, looking for someone a bit more specialised, like a neurologist. The Harley Street clinic can't help me.

 

[Michael Leigh]

Did you find anything in the end? I'm also in London, looking for someone a bit more specialised, like a neurologist. The Harley Street clinic can't help me.

Hi @volterra.

You will get the best help and long-term aftercare for tinnitus under the NHS that no private practice can match in the UK. You will be wasting your money seeing a neurologist, if all you have is straightforward tinnitus with hyperacusis caused by noise trauma.

It is best to be seen at ENT under the NHS for tests. If it is necessary, then referred to Audiology to be treated for tinnitus and hyperacusis if you have it.

Michael

 

[Stuart-T]

You will get the best help and long-term aftercare for tinnitus under the NHS that no private practice can match in the UK. You will be wasting your money seeing a neurologist, if all you have is straightforward tinnitus with hyperacusis caused by noise trauma.

It is best to be seen at ENT under the NHS for tests. If it is necessary, then referred to Audiology to be treated for tinnitus and hyperacusis if you have it.

Agreed. Don't give your money to private ENT.

 

[Michael Leigh]

Agreed. Don't give your money to private ENT.

The private ENT will do a hearing test and possibly an MRI. Tests will reveal everything is normal which is usual with noise-induced tinnitus. Then suggest to give it time, and if you're still having problems, go to the NHS.

The bill, which won't be cheap, will be in the post.

Michael

 

[volterra]

The private ENT will do a hearing test and possibly an MRI. Tests will reveal everything is normal which is usual with noise-induced tinnitus. Then suggest to give it time, and if you're still having problems, go to the NHS.

The bill, which won't be cheap, will be in the post.

Michael

I've had the MRI and audiogram from the private ENT already (30 dB loss at 6 kHz). I've been referred to an ENT with the NHS but I'm still waiting.

I've only had debilitating hyperacusis for the last month and it's getting worse every week. So I'm feeling pretty desperate. My tinnitus is also reactive and changing all the time.

Surely there is a way to get access to some anti-inflammatory or neurological drugs before the referral goes through?

I don't understand how I'm supposed to lose the ability to do so much in life and calmly just wait for a referral. If I'd lost the ability to walk, I'd be in A&E.

 

[Chinmoku]

Did you find anything in the end? I'm also in London, looking for someone a bit more specialised, like a neurologist. The Harley Street clinic can't help me.

So what the private ENT will do are things the NHS don't do, and also provide treatment in a timely fashion that sometimes help. All the NHS will do is tell you to wait a few weeks to see if it goes away.

The private ENT otologist I consulted tested me immediately with hearing test, OAE, cochleography to check the level of hydrops (noisy) and MRI to rule out acoustic neuroma. Also an autoimmune blood test that however I learned later was not actionable, as that kind of test for AIED was too generic and kind of discredited years ago. It just cost money. This was done in a few days. Also, importantly, the private otologist immediately administered a course of oral steroids. That can reverse the hearing loss or stop its progression in some patients and is something one wants to try.

Again the NHS would do nothing.

Privately they also administered antivirals and Betahistine. None of this helped but at least you know you tried, the NHS just waits and referral times are long because tinnitus is not seen as urgent.

Privately they then suggested grommets because they said I might have ETD. I consulted a second private specialist who checked my Eustachian tubes with a camera and told me they were fine and strongly advised against grommets.

Having exhausted all quick interventions, I went then through the NHS. I had no fortune though, even the best specialists with PhD in tinnitus research or oto-vestibular issues couldn't help me, neurologists included, sometimes they wouldn't even try. I managed again privately to try some medication found effective in some studies, but no luck. Then I tried the South Korean nerve blocks but those worsened me. I tried Lenire too. I'm sorry to say nothing helped me but you may have more luck.

However, there isn't a specific center I would recommend, although Guy's hospital is good. Some might provide you with hearing aids if you have also hearing loss. In the end everyone gave up and referred me to the mindfulness course of Dr. McKenna, who is excellent but wasn't able to help. I did the course religiously and was already an experienced meditator pre tinnitus, but mine is constantly worsening and catastrophic. However, I hope yours is helped by intervention. Mindfulness for example is effective for many people, Dr. McKenna has a published paper on that.

Good luck and fingers crossed.

 

[volterra]

So what the private ENT will do are things the NHS don't do, and also provide treatment in a timely fashion that sometimes help. All the NHS will do is tell you to wait a few weeks to see if it goes away.

The private ENT otologist I consulted tested me immediately with hearing test, OAE, cochleography to check the level of hydrops (noisy) and MRI to rule out acoustic neuroma. Also an autoimmune blood test that however I learned later was not actionable, as that kind of test for AIED was too generic and kind of discredited years ago. It just cost money. This was done in a few days. Also, importantly, the private otologist immediately administered a course of oral steroids. That can reverse the hearing loss or stop its progression in some patients and is something one wants to try.

Again the NHS would do nothing.

Privately they also administered antivirals and Betahistine. None of this helped but at least you know you tried, the NHS just waits and referral times are long because tinnitus is not seen as urgent.

Privately they then suggested grommets because they said I might have ETD. I consulted a second private specialist who checked my Eustachian tubes with a camera and told me they were fine and strongly advised against grommets.

Having exhausted all quick interventions, I went then through the NHS. I had no fortune though, even the best specialists with PhD in tinnitus research or oto-vestibular issues couldn't help me, neurologists included, sometimes they wouldn't even try. I managed again privately to try some medication found effective in some studies, but no luck. Then I tried the South Korean nerve blocks but those worsened me. I tried Lenire too. I'm sorry to say nothing helped me but you may have more luck.

However, there isn't a specific center I would recommend, although Guy's hospital is good. Some might provide you with hearing aids if you have also hearing loss. In the end everyone gave up and referred me to the mindfulness course of Dr. McKenna, who is excellent but wasn't able to help. I did the course religiously and was already an experienced meditator pre tinnitus, but mine is constantly worsening and catastrophic. However, I hope yours is helped by intervention. Mindfulness for example is effective for many people, Dr. McKenna has a published paper on that.

Good luck and fingers crossed.

Thanks a lot for the detailed response @Chinmoku.

Do you reckon it's possible to go to a private ENT and ask for a course of steroids?

Do you have hyperacusis or just really bad tinnitus?

 

[Michael Leigh]

So what the private ENT will do are things the NHS don't do, and also provide treatment in a timely fashion that sometimes help. All the NHS will do is tell you to wait a few weeks to see if it goes away.

I am sorry to know of the difficulties that you have been going through with tinnitus, but respectively disagree with your comments about the NHS, which is a wonderful healthcare system in my opinion, and I have had very good treatment for my tinnitus for the last 26 years as an out-patient. I know you have been seen by many healthcare professionals in the private sector and yet you are still having difficulties.

Hope you get some relief soon,
Michael

 

[Michael Leigh]

I've had the MRI and audiogram from the private ENT already (30 dB loss at 6 kHz). I've been referred to an ENT with the NHS but I'm still waiting.

Do you reckon it's possible to go to a private ENT and ask for a course of steroids?

I strongly advise you not to seek any private help for your tinnitus and wait for your appointment. I say again, you will get the best help and long-term aftercare for tinnitus under the NHS that no private practice can match in the UK. I hope the bill from the private ENT wasn't too much.

With straightforward noise induced tinnitus which is what I believe you have and possibly hyperacusis, there should be no rush to be seen at ENT, providing you don't have additional symptoms: acute pain in your ears, dizziness, balance problems and deafness. The correct way to do things is to wait for your appointment at ENT, which ideally should be at least 4 preferably 6 months after the onset of tinnitus.

Please click on the link below and read my post: Tinnitus, A Personal View, which explains the reasons why the ears and any treatment for tinnitus should be left alone and the importance of waiting to see what happens, because if things are rushed, some treatments can easily make tinnitus worse.

I believe @Chinmoku has additional medical conditions that affect his tinnitus that have made treatment and habituation difficult. His situation is completely different from yours.

Be very careful with what you are doing.

Michael

Tinnitus, A Personal View | Tinnitus Talk Support Forum

 

[Diego LR]

So what the private ENT will do are things the NHS don't do, and also provide treatment in a timely fashion that sometimes help. All the NHS will do is tell you to wait a few weeks to see if it goes away.

The private ENT otologist I consulted tested me immediately with hearing test, OAE, cochleography to check the level of hydrops (noisy) and MRI to rule out acoustic neuroma. Also an autoimmune blood test that however I learned later was not actionable, as that kind of test for AIED was too generic and kind of discredited years ago. It just cost money. This was done in a few days. Also, importantly, the private otologist immediately administered a course of oral steroids. That can reverse the hearing loss or stop its progression in some patients and is something one wants to try.

Again the NHS would do nothing.

Privately they also administered antivirals and Betahistine. None of this helped but at least you know you tried, the NHS just waits and referral times are long because tinnitus is not seen as urgent.

Privately they then suggested grommets because they said I might have ETD. I consulted a second private specialist who checked my Eustachian tubes with a camera and told me they were fine and strongly advised against grommets.

Having exhausted all quick interventions, I went then through the NHS. I had no fortune though, even the best specialists with PhD in tinnitus research or oto-vestibular issues couldn't help me, neurologists included, sometimes they wouldn't even try. I managed again privately to try some medication found effective in some studies, but no luck. Then I tried the South Korean nerve blocks but those worsened me. I tried Lenire too. I'm sorry to say nothing helped me but you may have more luck.

However, there isn't a specific center I would recommend, although Guy's hospital is good. Some might provide you with hearing aids if you have also hearing loss. In the end everyone gave up and referred me to the mindfulness course of Dr. McKenna, who is excellent but wasn't able to help. I did the course religiously and was already an experienced meditator pre tinnitus, but mine is constantly worsening and catastrophic. However, I hope yours is helped by intervention. Mindfulness for example is effective for many people, Dr. McKenna has a published paper on that.

Good luck and fingers crossed.

I agree with you.

The NHS did not offer anything to me, apart from a hearing test and an MRI. At least, my private psychiatrist and neurologist (back in Spain) offered some drugs that are helping me.

 

[volterra]

I strongly advise you not to seek any private help for your tinnitus and wait for your appointment. I say again, you will get the best help and long-term aftercare for tinnitus under the NHS that no private practice can match in the UK. I hope the bill from the private ENT wasn't too much.

It was free. I have some private medical insurance with my employer which covered everything. It would have been at least £1000 if I had paid for it all myself.

Although looking back, I wish I had done nothing as the MRI was loud and the microsuction before the hearing test also worsened me. But I did the best I could at the time.

I at least want some acknowledgement from a doctor of how serious my situation is.

 

[Chinmoku]

Thanks a lot for the detailed response @Chinmoku.

Do you reckon it's possible to go to a private ENT and ask for a course of steroids?

Do you have hyperacusis or just really bad tinnitus?

I have some hyperacusis but minor. I have progressive hearing loss. But what is killing me is the tinnitus, it's unlivable.

I think the NHS is ok except in the acute phase. I also have another bad diagnosis now and the NHS has been exemplary, but for acute hearing problems it is wait and see. The private sector is much more proactive and this is a fact.

For oral steroids, they may help in the acute phase but they can also make tinnitus worse. In the chronic phase they might help if you have AIED but it's a crapshoot. You could try intratympanic injections, but you need to go private. Ask for the risks before, less systemic problems than oral but again a crapshoot.

If you go to a private ENT, they may be willing to prescribe steroids in the acute phase or, if you insist, he may even prescribe them in the chronic phase although that's less likely.

NHS guidelines assert steroids are ineffective I believe, so they never prescribe them.

I wish you the luck I didn't have.

 

[Chinmoku]

I strongly advise you not to seek any private help for your tinnitus and wait for your appointment. I say again, you will get the best help and long-term aftercare for tinnitus under the NHS that no private practice can match in the UK. I hope the bill from the private ENT wasn't too much.

With straightforward noise induced tinnitus which is what I believe you have and possibly hyperacusis, there should be no rush to be seen at ENT, providing you don't have additional symptoms: acute pain in your ears, dizziness, balance problems and deafness. The correct way to do things is to wait for your appointment at ENT, which ideally should be at least 4 preferably 6 months after the onset of tinnitus.

Please click on the link below and read my post: Tinnitus, A Personal View, which explains the reasons why the ears and any treatment for tinnitus should be left alone and the importance of waiting to see what happens, because if things are rushed, some treatments can easily make tinnitus worse.

I believe @Chinmoku has additional medical conditions that affect his tinnitus that have made treatment and habituation difficult. His situation is completely different from yours.

Be very careful with what you are doing.

Michael

There is some truth in what you say Michael, and I don't disagree entirely. The private sector often tries to sell you useless and non-actionable or even harmful things (discredited autoimmune blood test and grommets in my case) but you want to be at peace that you tried everything and steroids do help some people in the acute phase. This is all I'm saying.

As for the NHS being wonderful, it depends on the situation entirely. Mental health is in shambles, and let's all remember what the NHS did to poor Joe Battams, may he rest in peace.

 

[Michael Leigh]

As for the NHS being wonderful, it depends on the situation entirely. Mental health is in shambles, and let's all remember what the NHS did to poor Joe Battams, may he rest in peace.

I am sorry know that you are still in discomfort @Chinmoku and mean it when I say, I hope that you find some help and relief soon for your tinnitus, hyperacusis and other medical conditions.

The NHS isn't perfect and has its problems. I used to work in an NHS psychiatric and general hospital, doing maintenance as a carpenter and joiner. I stand by what I have said, it is a wonderful healthcare system in my opinion.

I wish you well,
Michael

 

[Michael Leigh]

I at least want some acknowledgement from a doctor of how serious my situation is.

ENT doctors treat underlying medical conditions that cause tinnitus within the auditory system and there are many. However, they do not treat tinnitus because this is not their area of expertise. I will assume your hearing test and MRI scan were normal which I previously mentioned would likely to be the case, with noise induced tinnitus.

ENT may refer you to Audiology if it's necessary. Here, you will see either an audiologist or hearing therapist that specialises in tinnitus and hyperacusis treatment. These are the correct healthcare professionals to see. ENT may advise that you wait a while before referring you to Audiology, which I have explained the reasons in my post: Tinnitus, A Personal View.

Try to relax and wait for your appointment.

Michael

 

[volterra]

ENT doctors treat underlying medical conditions that cause tinnitus within the auditory system and there are many. However, they do not treat tinnitus because this is not their area of expertise. I will assume your hearing test and MRI scan were normal which I previously mentioned would likely to be the case, with noise induced tinnitus.

No, my hearing test shows a 30 dB notch at 6 kHz, the MRI is normal.

My noise trauma was 3 months ago, after getting all these tests done 2 months ago I tried to live a normal life as the ENTs did not think it was serious. I ended up making things worse and now I'm struggling with having normal conversations.

If the trend continues, I won't be able to have a shower in a few weeks. I don't understand how you expect anyone to relax under these conditions?

Isn't it rational to seek out as many experts and treatments while I can still speak?

I'm trying to minimise my general noise exposure, as silence is the only thing which slows the worsening. But of course I still need to speak to people at least once a day to keep myself sane.

I know you are trying to reassure me @Michael Leigh but I feel like you are not looking at the specifics of my situation.

 

[CRGC]

No, my hearing test shows a 30 dB notch at 6 kHz, the MRI is normal.

Is your notch bilateral or unilateral? I saw in your introductory thread that you think an impact to your head/ear could have contributed to your issues. If the hearing loss is only on the side of impact, my hunch is that it could hint towards physical damage. I'm not a doctor nor a health professional though, so take that with a grain of salt.

My hyperacusis was also at its worst about 1-2 months after trauma. It has since slowly improved, although it is still a problem and fluctuates a lot. Your custom earplugs will hopefully help you resume some normal activities once you receive them. Hang in there.