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stringplayer
 #1 
Well, there is a hyperacusis board, and there are two tinnitus boards.  And now there's this new fourth board right here.

I've got some thoughts about what will make this board unique.  Not necessarily better, but definitely unique.

But I'd kind of like to hear what your ideas are before I give you mine.  (That way I get to change mine if I like yours more!!!!)

sp
selahpraise
 #2 
I've expressed this before, but here would be my idea of something unique.  I want to be guided through the type of assistance that you offered to patients when you ran your tinnitus clinic.  R2 had some thoughts before he decided to take a break about helping people with the concepts of TRT.  Yes, I can buy the books and try to decipher these things myself (and have), but it isn't quite the same as having input from someone(s) who have proven that it works in practice, in the real world.  I don't know what the format for this would be:  we would need to be able to save the posts (sessions) for later reference.  And this might be a considerable effort on your part and R2. A lot to ask, I know.

I am personally past the point where I am panicky about this condition, although once in a while the fear creeps back in.  I don't want to leave this world because I'm afflicted with a relentless noise, but I'm not where I know I could be - there is still a quality of life issue and a tendency to give too much thought to t. 

Just some thoughts,

SelahPraise

stringplayer
 #3 
Interesting concept, Selah.  But every tinnitus sufferer brings something unique to the table.  Various treatment approaches are indicated for various circumstances, in my opinion, and the combinations and permutations are nearly infinite!  And even more than that, we have no access on this board to test results, etc.

My thinking is to try to address issues in generalities for the most part, and have individuals glean from the discussion that which would be appropriate in their particular situations.

Appreciate the input.

sp
Birdy552007
 #4 
Hmmmm. Something unique. How about a tumor? A benign tumor, called an Acoustic Neuroma, which sits on the 8th cranial nerve, and causes many problems, including T.
Many people have come to me, in a panic, asking whether or not they should have an MRI to check for this tumor. My answer? No. Why? Because AN's are very rare, and are only found in 1 in 100,000 people. Maybe even more.
Anyone have thoughts about this? Anyone want to share an experience similar to mine? We're all ears. (hee hee)



Hey sp, where's my parrot? Can't post without me Birdy.
stringplayer
 #5 
Birdy, how did you first become aware that you had an acoustic neuroma?  What were the symptoms that led you to make an appointment for an evaluation?

sp
Rob_in_Denver
 #6 
I have two suggestions:

1. An updated FAQ on tinnitus and tinnitus treatments.  So that whenever a newbie asks a question that has been discussed, he/she can be referred to it.  That of course means that it would need to be maintained.  There is the old Bixby FAQ in various places on the Internet, but it has not been updated in some time.

2. Let's all try to stick to the topics of the Board -- tinnitus (and I guess) Hyperacusis -- and even though we may disagree on issues/treatments, let's respect each other as one of the ground rules.

Thanks,

Rob
stringplayer
 #7 
Excellent suggestions both, Denver.

(If it's OK with you, I'm gonna call you "Denver" since Rob x 2 has already registered here as "Rob.")

Regarding an updated FAQ, you are right in that it will take a lot of work to formulate and maintain.  I personally have more than enough on my plate at the moment to take on such a formidable project, but I would be willing to be available in a resource/consultant sort of role.

And you know that I will fully devote myself to making your second suggestion a reality.  Indeed, looking at the subject line of this thread, THAT may well be one of the main things that make this place unique.  I believe if we can truly maintain an atmosphere of respect for one another, the folks who seek out that sort of thing will find their way here and make this board an even more valuable resource.  And the folks who do not give a whit about an atmosphere of mutual respect ... won't want to be here.  Nothing wrong with that; there are other sites where they will likely feel right at home.

I want to copy (with slight modification) something that I wrote elsewhere yesterday:

I've got a good friend who is currently spending a couple of weeks in Kenya doing missionary work. As she was leaving for the airport she said to me that she did not know if she was up to such a daunting task. She was terribly concerned that her presence in Kenya wouldn't have the kind of impact that would make an appreciable difference in the lives of the people there, so great was their misery and so great was their need. So I said to her, "If you are able to bring a smile to the face of even one starving child during the two weeks you are in Kenya, would that constitute an 'appreciable difference?'" Well, that one brought a smile to my friend's own face - and she left for Kenya full of hope.

That's kind of how I see the tinnitus and hyperacusis communities. There's a whole lot of misery and a whole lot of need.  And I figure that if on this board we can help somebody out just a little every once in a while, it will have been worth it.


Thanks for joining the board, Denver.  Good to see you here.

sp
selahpraise
 #8 
I agree with Denver.  I am praying that this board does not go the direction of the others.  It would be so refreshing to not have to watch people one-up each other in the insult department.  I am seeking viable information that will improve my quality of life. And I think it is important to point out that one of the components of tinnitus is often depression so it isn't very uplifting to read nothing but contentious remarks on a support board.

So let's set a new precedent for internet exchange and take the high road here.

Hoping,

SelahPraise

stringplayer
 #9 
Selah posted:

So let's set a new precedent for internet exchange and take the high road here.

...........

Excellent.

That is absolutely the plan, Selah.  And there are very simple safeguards in place to make sure that happens.

Nobody is holding a gun to anybody's head forcing that individual to register and participate here.  But if a person does chose to participate, he or she will be expected to - as you phrase it - "take the high road."

And that most definitely includes Your Host, moi!

sp


stringplayer
 #10 
Here's another thing that might make this board unique ...

After things are really up and running smoothly, and after it is well-established that discussions here are consistently respectful and civil, I think that from time to time I'd like to invite various clinicians and researchers to post their opinions on a topic of interest or possibly answer a question or two that might come up within a thread.

Any thoughts?

sp 
pt
 #11 
Hello everyone. This is peach oid, now posting as pt. I am glad to see tinnitus and hyperacusis connected on one board, because for me they are two sides of the same coin. Actually, pain in the ear canal is the third side of the same coin. So for me they are all very separate and yet very much the same thing.
stringplayer
 #12 
Welcome, Peach!

And, yea.  That's another unique aspect here - tinnitus and hyperacusis given "equal billing" on the same site!

sp
bigfred31
 #13 
good deal because i think i have both now

selahpraise
 #14 
sp,

I love the idea of clinicians and researchers being invited to share what is going on and what we could be doing to more effectively help ourselves.  It is just so frustrating to try to locate people (professionals) who are up on this subject.  It seems to be on the back burner for most ENT's and yet it is becoming an even more widespread problem.  The poor guys who have to listen to gunfire every day of their lives in Iraq - they are the new casualties of this malady.

I totally trust my ENT, but he will be the first to tell you that his priority is surgery.  I'm excited at the prospect of input from people who are out in the field and can give us feedback.

SelahPraise

Rob_in_Denver
 #15 
sp posted:

After things are really up and running smoothly, and after it is well-established that discussions here are consistently respectful and civil, I think that from time to time I'd like to invite various clinicians and researchers to post their opinions on a topic of interest or possibly answer a question or two that might come up within a thread.
=========================================================

What a great idea!  I think all would welcome that.

And, yes, feel free to refer to me as "Denver" to reduce confusion. 

Rob
Birdy552007
 #16 
how did you first become aware that you had an acoustic neuroma?  What were the symptoms that led you to make an appointment for an evaluation?

Well sp, I had no symptoms at all until my family and I flew to Disney world in 1998. The second night of our stay, I went to bed, and felt like I was on a ship. The bed LITERALLY moved from side to side, and up and down. It was horrible. This subsided about 4 days into the trip, but of course, we had to fly home.
Once there, the *ship* symptoms returned. Along with dizzyness, vertigo, and abnormal tinnitus volume in my right ear. After 2 weeks of that nonsense, I went to my GP, who diagnosed an inner ear imbalance from the plane trip. He gave me Antivert, but it did not help. So, I went back, and they ordered an MRI. And, as they say, the rest is history.
As I stated earlier, dizzyness and vertigo does NOT mean that one should run out and have an MRI for a tumor.  There are a dozen reasons why a person experiences these symptoms. IMHO, if these symptoms last over 2 or 3 weeks, with no relief from a GP's diagnosis, then yes, perhaps an MRI is in order.

Birdy
stringplayer
 #17 
Birdy, at what point did you first notice hearing loss?  Was it before or after the radiation treatments began?

sp
Birdy552007
 #18 
Well sp,
I actually noticed it a few years before I was diagnosed. I realized I could not talk on the phone with my right ear. I didn't really give it much thought; just figured it was age related or something. I knew why my hearing was so bad when it was tested, and the tumor detected. (sigh)
And, as you know, it's getting worse. And my appointment with my ENT isn't until MAY!!!!!!!!! Geez, he's popular.

Birdy
stringplayer
 #19 
I wonder what your hearing would be like now if you never had the radiation for your AN.  Possibly it would be no different.  You were already losing your hearing prior to treatment!

Just a thought.

sp
Birdy552007
 #20 
True. With an AN, you can opt for a "Watch and Wait" diagnosis. The Dr will moniter your AN for months, maybe years, to see if it grows larger. Some do. Some don't. Mine *may* have stayed the same size, but like you stated, my hearing would have gone downhill, no matter what. Radiation was the best route for me, as it stopped the growth of the tumor. And there were no promises made to me. I was flat out told that I had a 80% chance of losing my hearing, over time. That's better than waking up from surgery, completely deaf, and having to deal with it right away. At least I've had 10 years to get used to the loss.

Birdy
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