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!
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