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AudiologistJohnson

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Reply with quote  #1 

I would like to say that even if you did try TRT once and did not get good results the first time for H, it is still possible to do it again and try again.

That is an important idea because sometimes we might think, well, it did not work the first time, so I won't try it again.

I would suggest that perhaps in the time frame of your first go-round, things might have changed and shifted in the approach, also you might look around and try a different clinician, no negative here for Dr. Becker, who seems like a terrific fellow, but it is  not a bad idea to go along with someone else for a different approach.

I would like to see you give it another whirl, and if you still have your devices, you can use them again, or try nature sounds or something else that is pleasant and nice to listen to....

I do not know much about the details of your case, but I am encouraging you to look around, go visit the TRTA association site.

You can try again, it might be different and you might experience success.  Seems to me that you need someone special, along with some counseling therapy to help you find the light at the end of the tunnel, and trust me, it is there.  Shining brightly.

Ok, Jesse, you know people care about you here.  You can do it, just find the next step on the stairway and hoist yourself up there.

Dr. J

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DanMalcore

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Reply with quote  #2 
Jesse, I am not sure why you took TRT from a clinician who had not been trained by Dr. Pawel Jastreboff.  Perhaps it was because you live in Wisconsin. There are just a truck load of clinicians out there that are saying they offer TRT and know very little about the testing, diagnosis, TRT protocol, and directive counseling that comprises the comprehensive treatment of this specialized sound therapy.

I would agree with Dr. Johnson but this time go with a clinician trained by Jastreboff.  Patients with hyperacusis do not like to travel to find a qualified clinician but it is crucial to their recovery.  Back in 1994 I had to travel from Wisconsin to Maryland.  You can do this if you want your life back...

Dan

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Jesse

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Reply with quote  #3 
This thread is titled "For Jesse" and that is what I want it to be.  A couple of you have made it very clear what your opinions are and what you believe to be fact practically on every thread on this message board so I already know.  This thread is for Jesse from Dr. Johnson and other than Dan I don't want anybody to post anything.  I demand and deserve that respect.  And I don't want this thread to go on forever with qoute after qoute after quoute.

First of all, Dr. Johnson, I am grateful for you to take the time to be on this forum and communicating directly with me right now.  May I ask where you are and maybe a little bit of your background?  The bad thing about a forum is that you don't know really who you are communicating with.  It really could be anybody, although I do believe you are who you say you are.

I am going to continue and have been doing everything you have suggested.  I have requested from the VA that I work long distance with Dr. Henry in Portland who works for the VA.  I am in Wisconsin.  And so there is no argument, he is on the TRT trained list of providers.  I don't know if this is going to happen or not but I asked for it to.  This is going to be extremely difficult because my ldls are much lower than they were originally when I did TRT with Dr. Becker or neurmonics with Jill Metzer.

As far as meds (you talked about in the "To Jesse" thread), I am still going to keep trying them to.  But name the med and I've probably tried it.  The VA (psychologists and doctors)  has crammed a lot of pills down my throat over the last eight years and along with h, I've had every possible side effect of meds possible to deal with.  You want me to list them, I will.  Some are afraid to state meds they have taken or are taking, but I'm not.  I have been on narcotic pain killer for a number of years which makes me wonder how that is going to work with doing TRT again.  I am really between a rock and a hard place.  I want to get better for my kids but I can't get better because of my kids (I mean if I have to go off the pain killers to do TRT.)

I'm not stating all of this to just vent.  I'm stating all of this to bring attention to what you say is the 13% that TRT or neurmonics hasn't worked for.  I actually believe it is higher than 13% but that is neither here nor there.  Maybe the 13% finally got some attention and this new initiative came about because of it ---> http://www.hyperacusisresearch.org/home
The 13% need to tactfully keep making themselves present to the medical community until it is 0%.

And now talking about councelling.  A few years ago a woman from Austrailia on this board said she was actually cured by going through CBT councelling.  I said, "Oh great, I'll try that."  I requested it from the VA and got no where for two years.  I've gotten much louder and I believe they are setting it up for me.  In the mean time, I have read books on it and I hate to sound skeptical but I don't believe just thinking positive is going to make my h any better.  I know your answer is to not be skeptical, but I believe that the 13% has some sort of physiological damage (ASD?) different from the other 87%.  Believe me, I wish it was psychological.  That would mean it can be fixed.  If it is physiological and there is no cure or procedure for this unknown damage then it can't be fixed.  Either way, I am still going to continue to try everything.  I don't believe that woman was one of the 13% and did have an actual type of phobia and that is why it worked for her.

Other things I've tried are inpatient (three weeks long) and outpatient pain clinics, acupunture, and reflexology.  And I do want to state that I have not totally relied on the VA to get help.  I've spent 1000's and 1000's of my own dollars to do what was suggested to get better.  As you can see by my examples the VA just doesn't give you what ever you want nor does any other health system.

Dr. Johnson, again, thanks for being here and thanks for your kind words, compassion, and caring.  I will be following your advise as I already was doing these things.

Jesse


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Jesse

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Reply with quote  #4 
Dan,

To answer your question of why I went to Dr. Becker, it was for the same reason that anybody with a health issue goes to a doctor.  To make it short, I went to a doctor who told me just to wait, went back to him, he sent me to another doctor, who misdiagnosed me with recrutment, and then went to another doctor, who sent me to another doctor.  Isn't that how it works?  I didn't even know what h was until I got to that last doctor.  It took me a week to learn how to remember how to properly pronounce hyperacusis.  Nobody has ever heard of it (except of course us).

I really hate to do this but I am going to have to quote someone in order to not allow anyone to start going on a tangent.  Dr. Becker states,
"A.  I did go through TRT. About nine years ago."  People can tear this sentence apart 100 different ways.  OK, so is he trained or not?

Dan, I give you all the credit in the world for what you have gone through with h and this wonderful web page that you created and evolved that I believe started back even before there was an actual Internet.  What if TRT had not worked for you and you were still one of the 13%?  Would you be looking at things from a different angle?  I understand that you want to help as many people with h that you can but don't forget the 13%.

Jesse
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DanMalcore

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Reply with quote  #5 
Jesse, to the best of my knowledge Dr. Becker has never been on the referral list.  Nonetheless, lets move on.  That was in the past and this is now.  Like the Eskimo proverb says: 'Yesterday is ashes, tomorrow wood. Only today does the fire burn brightly'.  The important thing now is that you work through a clinician who really knows how to take care of you.

As far as the 13%, any data I have ever seen on the success rate of TRT has never stated 13% as a failure rate.  Even the sampling within our network years ago showed a 91% success rate of TRT.  Whether it's 13%, 9% or whatever the percent might be, you are correct to hope, like all of us, that someday it will be a 0%.  If that day comes in my lifetime I will gladly thank everyone for the time and effort they have contributed here and close up the network and message board.

What if the TRT had not worked for me and I was one of the few that still had significant hyperacusis?  I would do just what Audiologist Johnson and I have been encouraging you to do - do it over with a qualified clinician.

You have much to be hopeful about in doing TRT over again with a qualified clinician.  On another note, who is that sweetheart giving you a kiss producing that great smile on your face?

Dan

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Jesse

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Reply with quote  #6 

That would be my Emily.  1/3 the reason I have to get better.  The other 2/3 are Allison and Zachary.

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Jesse

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Reply with quote  #7 
Well, I've talked to Dr. Henry in the Portland VA Med Center and he states he is not a clinician to do TRT.  He states he is a researcher.  Might want to take him off that list then.  He is going to send me some literature that he wrote on TRT and have me put in a VA study for t.  Although t is not really my biggest issue, I'll take what ever I can get.

So this puts me back to the starting point.

Dan, maybe you were in a position to go to Maryland for a period of six months to two years, but I am not.

Dr. Johnson, since Dr. Henry can't do TRT with me long distance with me then can you?  Since I've already been through it and have had h for eight years, I don't think this would be difficlut to do.  I know I have stated that I believe the problem is some unknown physical issue, but I WANT TO BE PROVEN WRONG MORE THAN ANY THING IN THE WORLD AND GET BETTER. If it works then that is great.  If it doesn't then I know to move on.   Like I've said before, if I never go to a concert, hunting, a festival, wedding reception, etc., etc., again then that is fine.  I just want to be able to talk to my children and do the basic things in life without being bed ridden for doing it.

Jesse
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DanMalcore

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Dan
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Reply with quote  #8 

My appointment in Maryland lasted two days not 6 months to two years.  Back in 1994 that was the only place I could go to find treatment.  There was nothing else.  If I wanted to recover I had to go there. 

 

If you look at the referral list, there is a qualified clinician that is only two hours from where you live.  This clinician has been trained by Dr. Jastreboff.  This is the best thing for you Jesse. 

 

Dan

 


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smn

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Reply with quote  #9 
Jesse, earlier in this thread you *demanded* that nobody offer an opinion besides Dr. Johnson and Dan Malcore. I happen to have an opinion. Just wanted you to know. If you would like me to post my opinion, fine. Just say so. If you want my opinion but don't want it to appear in this thread, you can e-mail me at:

opinion at tinn dot com

I assure you that the e-mail will reach me.

If you don't want my opinion (or anybody elses besides Dr. Johnson's or Dan's), then that's fine, too. I guess. It's *your* auditory system.

Kind regards -

smn
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Jesse

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Reply with quote  #10 
smn,

No that is fine to give me your opinion.  I was just frustrated with other posts where people forced their opinion, and forced, and forced, and forced it.  Their is a difference between giving your opinion and forcing it.  I would love all the help I can get, but in a tactful and cooperative manner.  Thank you, smn.

Jesse
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Jesse

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Reply with quote  #11 

Dan,

 

I can go somewhere for a few days, that wouldn't be impossible, but of course months or years would be.

 

I really hate to quote on this message board because I've seen that get out of hand but I am quoting myself from the ‘To Jesse’ thread:

 

 "I went to an on the list TRT trained provider for neurmonics, why didn't she tell me I wasted my time?  I showed her both the smaller replaceable WNG's I got from Dr. Becker and the bigger ones (looks more like a hearing aid) I got from the VA.  The only thing she said about the WNG's is she suggested I get the volume knob (that had to be turned with a screwdriver) changed out to a knob I could turn with my thumb and forefinger.  She said to keep using them as much as I could along with the neurmonics. Why wouldn't an 'on the offical trained list TRT provider' not tell me I wasted my time with TRT because it was done wrong and give no other advise except continuing to listen to them as much as I can along with the Neurmonics?  She did not say at what volume to listen to them or anything else except keep using them as much as you can.  That doesn't sound like it took a whole lot of TRT training to just tell me that.” 

I have been to the clinician two hours away from me as you can see above and this was my experience.  It was a $6000.00 on my credit card bad experience.  I’d rather pay Dr. Johnson for this actually THIRD time around with working with a clinician.  I’d even take an initial trip out to Portland which is where I found out where she is from.

 

Jesse

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smn

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Reply with quote  #12 
Jesse, just a few quick thoughts.

Regarding your Post #10, this is an Internet message board. YOU have all the control. NOBODY can force you to do anything. If you don't like somebody's opinion, just ignore it. Or stop reading.

Second, being an Internet message board, you really don't know who anybody here is (most assuredly including me). What might make perfect sense to you could be coming from a person who knows little more than you do - or even less than you do! Just because it makes sense doesn't make it correct.

Those disclaimers out of the way, in my opinion you should absolutely be re-evaluated *in person* by a knowledgeable and experienced audiologist, one who really understands sound sensitivity. The rest can be handled long distance, but you need to be seen once so that a proper diagnosis can be made and so that a treatment plan can be designed for you based on that diagnosis.

Given what I have read here, I would *unconditionally* recommend Dr. Gail Brenner in Philadelphia. Call her, discuss your history and situation on the phone with her, and ask her if she thinks she can help you. If you cannot find her contact information on line, e-mail me - and I'll be only too happy to give it to you. You may feel free to use my name, Dr. Stephen Nagler, as a means of "breaking the ice" with Dr. Brenner at the start of your call. (But wait ten days or so before calling, because she and her husband have just left the country on vacation.)

Hope this helps.

smn
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Jesse

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Reply with quote  #13 
Thanks Dr. Nagler.  From what I hear and read, u da man!  I'll look into this.

Jesse
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smn

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Reply with quote  #14 
I may or may not be "da man." It's the Internet, remember. So ALWAYS maintain a degree of healthy skepticism regarding what you hear and read! My posts are no exception.

(That said, you'll be in fantastic hands with Dr. Brenner!)

smn
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Jesse

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Reply with quote  #15 
I'm originally from Chicago.  That's my accent coming out  DaBears.  DaBulls.

Jesse
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Jesse

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Reply with quote  #16 
I think I say this on behalf of a lot of us when I thank people like Dr. Johnson and Dr. Nagler for getting on this board.  It makes me feel more comfortable knowing that proffesionals take the time to see what we are going through and put their educated two cents in.

I've started the process to see Dr. Brenner.  I guess this is the next step I need to do just to make sure I've crossed my t's and dotted my i's.

I do want to say to proffesionals and patients though, don't tell someone with h that they will be 100% better and they will go on with life as before.  Once you've had h, precations should always be taken as I've personally learned from my first go-round with TRT.

I read all of your threads and I don't have much to say.  It's not like I've found the answer and can give great advise.  As I've seen, we all also don't have exactly the same situation.  I do keep you all in my thoughts and prayers though.

Peace,

Jesse
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