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Kribu

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Posts: 41
Reply with quote  #1 
Yes, it's panic time again. Everyone asking "Why aren't you better yet?", me thinking, "Am I missing something?" Well, after reading the incredibly helpful *READ IT* (if a bit technical) paper "An Integrative Model Accounting for the symptom cluster triggered after Acoustic Shock"  I thought, I need to find a doctor who could read this and say, "Oh, yeah, I know what they are talking about."  Well, I've made an appointment at The Brain Center in Hudson OH.  After significant disappointment with the Tinnitus Management Clinic in Cleveland, I was hesitant to strike out again.  But after talking on the phone with the Dr. who would actually handle my case, who pulled up the research as we were talking, and understood all the processes and lingo within it (therefore, we could have a productive conversation), I booked it.  Worker's Comp will just have to catch up.  (again). 

I want to query you folks if anyone else has found "integrative neurology" specialists, and your experiences (pos or neg) with it.

BTW: going on two years, hyperacusis, exacerbated pre-existing tinnitus, ptsd (related) For newcomers, hang in there.  There ARE folks out there who care, and some are even providers!
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Margy

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Posts: 167
Reply with quote  #2 
Wow! I can only imagine talking to someone who can understand, and read, the very detailed and difficult article that explains this problem so well.

I have read through it and bookmarked it and wondered if I could ever find someone who knew neurology and was also willing to read and consider this.

You just might get some good answers! Let us know how it goes.
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Kribu

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Reply with quote  #3 
So I had my first exposure to Integrative Neurology today. WOW...ok, this Doctor does a lot with concussion patients, but also has had hyperacusis and tinnitus as some of the symptoms.  Best of all (in my opinion) he is curious, investigative, and holistically applying knowledge of various neurological systems and how they all interconnect or are interdependent.  For example, instead of putting sound in my ears to see what happens,(I squirm, I grimace, etc)  he's working through the vestibular (balance) and occular (eye)systems and cerebral cortex (thinking) to try to narrow down where my connections have gone awry.  Some of the hyperacusis and tinnitus changed slightly (volume, sensation, or type of sound) depending on the various tasks I was asked to do or positions of my head.  He is transparent that change--whether positive or negative--is information that will guide further treatment.  Everyone is different, and every day is different given so many "life" variables.  He also takes into consideration fatigue--neurological (he is getting clues about location of "glitch" (i.e, middle ear, inner ear, nerve branch X, etc) from my responses (left eye jumps when I try to X, balance is better after doing excercise Y) and switching up stuff or giving a break to work or explore a different area/system. What did I do? video "games" (ok, not games) for eye tracking, movements across the midline, "complex" body movements while eyes track a particular path, I have to say some of it was quite challenging yet so simple.  My brain was definitely "working out", and (as I call it) finding the "back door" into the "messed up parts" to strengthen or calm down (depending). Something very different: Laser treatment.Applied to various areas of head, neck, ears.  Sounds weird, but actually felt like very subtle stream of water rippling through my head depending on placement of laser.  Not like tuning fork (surface-ey), this was THROUGH my head.  Interesting.  I spent basically most of the day there, and he started talking about nerves and systems and stuff, and I recognized some of it from the paper I sent him...so he was using it.  He was very positive and excited about the paper's content.  I'm tired now, (its a 2.5 hr drive one way), and back again at the end of the week.  I have homework exercises to do--in specific order and need to track any changes (or not).  My ears aren't worse tonight, so that's a plus.  If interested, check out https://thebraincenterohio.com I'm hopeful.  If nothing else,its interesting and reassuring to "figure out how my brain works".  I'm hoping it might be a candle in the window for others here.
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