ENT? Neurologist? Psychologist? Who is best?

I keep seeing so many comments that ENTs are not helpful and often not knowledgeable or even compassionate. Beyond checking the ears for possible physiological causes (treatable), do they do any T sufferers any good? Should we be seeing neurologists instead? Does "somebody" need to help neurologists develop a subspecialty for T? Just wondering who has helped most of us the most.

I'm writing this because I live in the huge metropolitan DC area and there is no person or entity to turn to who can diagnose, educate, write Rx, monitor meds, provide therapies, etc. I feel left on my own to find someone to write me a Rx (a psychiatrist?), somebody else to tell me if I have menieres, somebody else (WHO??) to provide TRT, somebody else to help me with hearing tests , etc etc. Why is there no professional to take care of me? Why am I having to flounder about to figure this out? If this is a brain thing, shouldn't a neurologist be doing all this?

Am I missing something? Does this professional exist already and I haven't stumbled over him/her?

 

P.S. I think maybe a Neuroplasticitist?

 

Isabella
Have you tried an audiologist? There are plenty in the DC area.

Mark

 

So far no one can really help us, we have to wait for research and science to come with a remedy or a cure.

 

Yes she was very good at testing my hearing and talking to me about tinnitus. She could not write Rx and felt uncomfortable even discussing benzos, anti/depressants, etc. she did not know anything about TRT or CRT.shebis affiliated with one of the foremost ENT practices in the area. I have a list of "ear" doc with comments by T sufferers who have been to them (came out if a support group). All of us had this same question, if it's about the brain why are we not seeing brain doctors?

 

we're not seing brain doctors because brain medecine is basically at the prehistoric age

 

Isabella 123,

I agree there is no single medical professional to turn to who can diagnose, educate, write prescriptions, monitor meds, and provide therapy. To make matters more frustrating, most ENTs are not well-informed about tinnitus. Still, when tinnitus is new, it is very important to go to an ENT.

Tinnitus is a symptom of a type of pathology in the auditory system. Visiting an ENT, neurotologist or otoneurologist can shed light on whether an associated medical condition explains why we developed tinnitus. If the doctor should find an underlying medical condition, in some cases treatment can also help treat the accompanying tinnitus.

It is also a good idea to be examined by an audiologist as tinnitus can result from problems in the auditory system, an inflammation of the external ear, Eustachian Tube Dysfunction, perforation of the tympanic membrane, hemorrhage of the ear capillaries, and labyrinthitis.

Jane Henry and Peter Wilson’s book for people who are struggling with tinnitus is well known and I suspect has been discussed on this website. These authors wrote another book called The Psychological Management of Chronic Tinnitus, where they noted the need for "independent medical investigation of the tinnitus problem cannot be overemphasized."

After being examined by an ENT and audiologist, Henry and Wilson wrote that, in some cases, a referral to a specialist in neurology, ophthalmology, dentistry, or other discipline may make sense particularly for patients who have had a recent illness or injury or history of previous illnesses, or if the tinnitus is accompanied by "short stabbing aches, continuous head pain, dizziness or unusual physical sensations."

Tinnitus can be symptomatic of Meniere's disease or an early symptom of an acoustic neuroma. It can be associated with diabetes, hypertension, hypothyroidism, or cardiovascular disorders. Tinnitus can also occur in concert with anomalies of the musculature of the head and neck and other myofacial pain disorders. When tinnitus is accompanied by a clicking jaw, facial pain, and headaches, a referral to a dentist can be in order to see if the patient has TMJ.

Some of us may use one consultation as a jumping off point into serial doctor shopping - which is the perfect way to remain overly engaged with tinnitus. For others, going to a doctor and learning one's tinnitus is not explained by another condition can be extremely reassuring. It can also help us move away from explaining the possible causes of tinnitus and toward managing it.

here2help

 

Hi Isabella,

It's a shame about the lack of knowledge from your ENT, unfortunately though it's all too common. I had exactly the same thing myself.

As the medical profession doesn't fully understand tinnitus yet it can be a little confusing when looking for ways to help yourself, and also very confusing when they can't offer you much.

I've been reading 'musicophilia' by Oliver Sacks recently, his writing style is a bit fragmented but the stories are really interesting. All about musical hallucinations, with a few small parts about tinnitus. A lot of the patients had temporal lobe damage or some other brain condition that triggered it, although for many stories it was unexplained.

Whilst reading it does make you wonder why the connection between neurologists and tinnitus treatment isn't a common one. It just feels logical that the brain is the key - to me anyway.

Dont get too disheartened by your experiences in medicine; take the tests you need to rule things out, get the right consultation, but then I think the best bet is to look for yourself at the treatment options that work for you - with medical help where you need it.

You'll probably find that you're the best judge of what helps you, it is after all our perception of T that causes the most distress.

 

Isabella, this one's easy. Dr. Gail Brenner is an audiologist who happens to be one of the three or four top tinnitus clinicians in the US. She is highly competent, knowledgeable, and experienced. Her integrity is beyond question. And she is one of the most pleasant people you will ever encounter anywhere! Plus, Dr. Brenner's office is in Philadelphia - only a two-and-a-half hour drive from Arlington. Ask her to evaluate you and make recommendations. If she thinks you need to see any other specialists as part of your evaluation, she'll let you know.

Stephen Nagler

 

Hi, Isabella:
I pretty quickly figured out, after my tinnitus onset, that I needed a team approach to my doctors. Tinnitus is a complicated condition, one that has a both a psychological and physical component to it. The professionals you need depends greatly on how you are reacting to your tinnitus, how you got it and prior medical history.

I agree, many patients don't initially know that tinnitus is really more of a brain disorder than an ear disorder. A primary ENT can only take you so far, although you do need one.

(And a good one. FYI: My primary ENT for years got fired from my team right away after he gave me the typical "live with it" response following my diagnosis, and then got annoyed with me when I kept asking questions and became increasingly upset. "What do you want me to do, give you a nerve section now?" he snapped. This before I even knew what a nerve section was. What a gem. And he had just gotten some big fat award from a medical association, so I assumed he was a top doctor. Wrong.)

Oh, and maybe some other TT folks have some ideas about qualifications for team members and which professionals should be on your team. I would love to hear from others.

Anyway, here are my requirements for a doctor to be on my team. By the way, I pay one of them out-of-pocket because he doesn't take my particular insurance. But I don't care because he is a great member of my team and I trust him:

Supportive, wanting to work with me and not annoyed by my questions.

Prior experience with patients who have tinnitus. This can be tough to find in some professions.

Open to at least discussing alternative treatments.

Preferably, a personal good reference from another tinnitus patient, or others you trust. For example, @Dr. Nagler gave you a reference to an audiologist. I would go check her out.

Good credentials -- although I have learned that graduating from a top medical school, or similar things, is no indication of quality. I went to a guy early on who claimed to be a tinnitus cognitive behavioral specialist, recommended by later fired ENT, who had a PhD from Cornell. He was a total quack. One session was all it took for me to figure that out, fortunately.

And finally: Professionals on my team are ones who feel "right" for me. Trust your gut here. If it feels wrong, grab your wallet and run.

So which professionals should be on your team? Here is who is on mine. But your members will depend on your particular condition and symptoms. And some of these professionals will not be on your team indefinitely. You will no longer need them, as you figure out what is going on and move toward habituation.

Also: I have found I have better luck with professionals affiliated with good university research institutes than with large ENT practices. But that is just my experience. So my team members are/were:

A primary care ENT: Yes, despite all the ENT bashing on this board, you do need one. You may need to get your eustachian tubes checked before flying, wax removal, infection treatment... our ears are hypersensitive because we have tinnitus so we need to be extra careful with our maintenance. My baraotrauma specialist (I got tinnitus through barotrauma) became my primary ENT because he also does general ear medical care, understands T and is a good guy.

An audiologist: Your audiologist should be a tinnitus expert, and certified in treatments like Neuromonics, TRT, etc. He/she preferably should be at the doctorate level, although that's not a non-negotiable for me. Your audiologist also should be working with an ENT that can check for vestibular problems, things like Meniere's (have you had a VNG test done?), etc.

A neurologist: I would at least have an exam done to rule out any serious brain problems, like tumors, that might be impacting your tinnitus. I believe there are neurologists who specialize in the brain's connection to the ears. I went to my regular neurologist, as well as a neuropsychologist, because I had a prior stroke and was concerned about an area of brain death and how it might be tied into my tinnitus. They couldn't do much for me. But it only took a couple of visits to figure that out, and I was able to move on and concentrate on other treatment areas. Neurologists also are more familiar with medications that interact with your brain chemistry, and might help you, than ENTs.

A psychiatrist: This doctor is critical if you have having an anxiety (or depressive) response to your tinnitus. The psychiatrist will be the one to discuss things like benzos, medications, etc. I would use a psychiatrist vs. a primary care doc for these drugs. You want someone who will give you choices but refuses to over-prescribe and gives you clear instructions.

A psychotherapist: Again, this person is helpful if you are having trouble coping with your tinnitus (anxiety, depression, etc) and works in conjunctive with psychiatrist (although they don't need to be in the same practice) Try to find someone with tinnitus experience, although it can be hard. Cognitive behavioral therapy, coupled with help from a good psychiatrist, saved me in my early days. CBT and mindfulness training are the two most popular therapies for tinnitus right now, but certainly not the only ones. And indeed, they don't work for everybody. But a good therapist can give you skills you can use throughout your life, and will help you leave behind the drugs more quickly.

Any alternative therapist that you find help you: I have done acupuncture and probably will try cranial sacral therapy. Be aware, however, that most of these therapies are not scientifically proven... its up to you if you want to spend your money.

Gosh, sorry this ended up being so long. But really, building a good professional team to support you is key, Isabella. It will empower you to feel in charge. Good luck!

 

LadyDi, you always give such good responses. So helpful, thank you for taking the time and making the effort!

 

Hi,

How do you find a baraotrauma specialist? Some of my symptoms seem to fit this problem. Thanks.

 

Hi Isabella,
I totally get where you are coming from. Very frustrating. Some really helpful responses on this thread, especially from Here2Help, Dr. Nagler and LadyDi.
I have been to see so many different specialists already.
Unfortunately, the neurologist had no experience with t. The neurotologist was not compassionate and checking patients through like numbers. My ENT was the one who wrote the prescription for the RX. My GP wouldn't.
I know my onset was due to intranasal lidocaine. But I want to find out what it may have effected. I am pretty sure it is the CNS/Auditory Cortex, as lorazepam makes the sounds die down to a bare minimum. But also I wonder about nerve irritability or damage also.
So my next step is to get an MRI of the outer and inner ear canals, as well as the VIIIth cranial nerve/brain to see for further damage. My ENT will write out a prescription for the ear canals, and the neurologist for the rest.
With you, maybe also a cervical and tmj related MRI may be helpful too. For me also, come to think of it.
A great audiologist, like the one StringPlayer mentioned would be able to refer you out to others and also help with habituation through TRT and various therapy avenues. Plus the audiologist can carry out extensive tests to test the hair cells, high frequency audiogram testing and a host of other response testing.
Phew - yes there should be a tinnitus specialist who can carry all this out for us. If about one fifth of the population or more have this, then surely they would get enough work.
Lisa

 

Hi Lisa any advice on what I should do really confused about which way to go with this but first a quick summary of my story about 2 months ago I was exposed to fairly high frequency noise which made my ears go crazy had like an electrical pulse going up through the back of my head which was followed up by a loud pop in the back of my head a few days later.Ive since developed H but a really confusing type of H.When Im around sound the back of my head gets very tight and sore but its defenitely not tension and also where the pop happened in the back of my head there is still pressure there which worries me.Ive been to an audiologist who says my hearing is perfect he tested my middle ear which is perfect he even done the haircell test which came back good.Ive also been to see an ent doctor yesterday which was pointless as she said without even looking at me that it was ETD which is bull as my tubes arent blocked as I can open them easily so what can it be as I write now I can still feel this electric tingling and pressure in the back of my head??who should I go see next??Thanks

 

Hi Bill, not sure if you have tinnitus with this too? There are doctors on here that would be more equipped to answer your query. Possibly Dr. Nagler or Here2Help.
I wonder if it was a stress response to the high frequency? Hyperacusis often fades with time. I know the back and base of the head is where we hold a lot of anxiety response.
If the pressure is at the back of your head, I wonder if a neurologist would be your next move, or possibly a neurotologist. Having them prescribe an MRI would be a good idea too, to rule anything out.

 

Thanks for your response Lisa yeah I have T for a few years but was completely habituated it has since changed since recent exposure I had an MRI a few years ago which was clear but should I consider getting another one??

 

I would definitely talk to a neurologist who also is very familiar with t and hypercusis and see what s/he suggests. Maybe get a referral by a good ENT for a neurologist.

 

I know this might sound crazy, but sometimes I put a covered hot water bottle on my pillow at night and lay on my back with the base of my head against it. It is so calming. Maybe it will help relax the stress response. I am sure it will go away with time, but the neurologist would just be to be on the safe side.

 

Ha a good ENT in Ireland simply doesnt exist they pretty much do nothing to help they just love prescribing antihistamines and sending you on your way its ridiculous but my audiologist is also a professor in Irelands top eye and ear hospital maybe he could help with this anyway thanks for the advice Lisa