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Micky
 #1 

Hi , well it's two years now iv'e been using a Neuromonics processor, and i'm sad to say that it's not had the desired  affect i was led to believe would happen !. the poster in the clinic window said ' get your life back in six months which you once took for granted'..i know three people including myself on another forum across  town, and three people in Australia.. total six, ...and all have said it has not worked for them and some even said it made them worse ...six times $5000 = $ 30.000, thats a lot of money to find out somethings not going to work !! ..iv'e given it my best shot, and i'm still using it, as i would rather listen to music than my ears howling.. but i do wonder sometimes if a $ 200 i pod with a decent set of ear phones and some specialised digital  nature sounds would be just as good ...Micky ..

selahpraise
 #2 
Micky,

I'm glad to hear this update even if it is disappointing.  Because for those of us who would have to borrow money or be put in a real financial bind to get this kind of help it is imperative to know the truth. 

I'm sorry that Neuromonics did not work for you, but I'm learning more and more that the claims made behind this treatment are just "too good to be true".  And there is probably a lot of truth in the ipod analogy.

Thanks,

SelahPraise

 #3 
On the other hand, I've heard tales from about the same number of people who *have* benefited from NM. Sure, it's all anecdotal. But what do we make of it? Should we really throw the entire treatment "under the bus" based on what I see as pretty flimsy "evidence" (in both directions)?

Two of the patients I know of have had great results very early on, first month or so (probably just outside of the return period though).

Biff

P.S. (gotta love the edit feature) - Micky, I am sorry it didn't work for you. I know what it's like to spend thousands on a treatment that didn't do anything (as probably do a lot of tinnitus sufferers).

CPW151
 #4 
Two of the patients I know of have had great results very early on, first month or so (probably just outside of the return period though).

Biff

 
Biff, as I have posted several times before your comments match my experience with other users.  Like Micky ten it did not work for me.  But several have told me it did work but it worked during the first month or a couple of times I have been told they could tell immediately.  Neuromonics will give you up to a month to get your money back without a problem.  If it doesn't work by then it probably won't work.  I think with a little pushing you could get your money back within two months.  But I really think in one month you will know and would suggest that you not get talked in to "keep using it, it will eventually work."  IMHO.

CPW
 #5 
Thanks, CPW. I may be heading down that road.
selahpraise
 #6 
I hope sp can bring a clinician in for some discussion on this.  I'm not knowledgeable enough to understand who potentially stands a good chance of gaining something from this treatment. 

And is there a way to define WHY it worked for some and not others.  It's just too much of a financial investment - not like a script for xanax to take the edge off.

Very frustrating to not know where to turn.

SelahPraise

Micky
 #7 

Selapraise said in part ..



I hope sp can bring a clinician in for some discussion on this.  I'm not knowledgeable enough to understand who potentially stands a good chance of gaining something from this treatment. 
-----------------------------------------------------------
Just as long as the clinician is not an agent for Neuromonics...as there is only one way the discussion will go, and thats his/her way ..sorry, but yes i am cynical, because iv'e seen it all before ..Micky ..
selahpraise
 #8 
I agree Micky, I don't want to be "sold" I want to be informed.  I'm not sure who might be able to guide us with more information, but I bet sp can find that person.  I'm just frustrated on the bad days and am trying to improve the quality of my life.

I get so tired of researching and comparing notes and coming up with no real conclusions - clarification of just "something" would help me deal, I think.

SelahPraise

 #9 
Micky - you are right about the "agent" part. Sometimes it is hard to separate the marketing from the treatment. The clinic I am visiting just began providing NM as a treatment. They are primarily a neurotology clinic. The audiologist told me they waited quite a while before providing NM; they are not quick to jump on bandwagons as she put it.

Anyway, the two people she is treating are doing quite well. Those are two of the patients I referred to in an earlier post. One of the developed T as a result of being near an explosion - I can't remember the details on the other.

Biff

Rob_in_Denver
 #10 
Micky

At least you tried it.  It did not work for me, either.  And that was a downer at first because the audiologist told me it absolutely would work, and also told me that nothing else would!  Well, she was wrong on both counts.

What is working for me is just letting time pass, relaxation exercises when it gets to me, and once in a while a Xanax to help me sleep. 

I have given up on everything else, and doing that in itself paradoxically seemed to help.  So, as time goes on it is bothering me less and less.  Hours go by during which I am totally unaware of it (even though mine is quite loud).

So don't get down.   Time is the great healer of many conditions -- including tinnitus.

Rob
Micky
 #11 

Hi Rob and thankyou , i must say you have always been very positive when i have read your posts in the past .. i'm happy that you are doing well, and hopefully i will be doing well myself one day ! ... at the moment i'm struggling as i'm having a bad time, with 4 days of loud right now, but maybe tomorrow it will give me a break..i cant do the xanax thing , iv'e been there and done that with very bad results..my body is very intolerant of drugs, and i'm still trying to taper off after 22 months of withdrawal hell ..!! ..still onward and hopefully upwards ..thanks again Rob ..Micky ..
CPW151
 #12 
Anyway, the two people she is treating are doing quite well. Those are two of the patients I referred to in an earlier post. One of the developed T as a result of being near an explosion - I can't remember the details on the other.

Biff

Have a question for you Biff.  "Those two patients who are doing quite well"?  Did the patients tell you this or did the NM clinician tell you this?  It does make a difference.  There does seem to be a difference at times when the clinician tells you their patients are doing well and then you talk to the patient.  I have personal experience with this and what the clinician heard was rather different than what the patient actually told me.  Clinicians, I think, have a way of hearing a little of what they want to hear.  Several times I had to respond to questions that were leading where they wanted the answer to go.  I got pretty politely blunt at times when I heard in interpretation of what I had said changed just slightly enough that it would have them believe it was working.  I encourage you to try it - but it's an awful lot of money and YOU decide if it works for you.  You WILL know very quickly.

CPW


CPW151
 #13 
Just another thought on this subject if you will bear with me.  I agree that we sure would like someone to tell us about Neuromonics but not a clinician or someone who has any sort of vested interested in NM or for marketing any other treatment, i.e. TRT, etc.  The big question is, where are you going to find someone who is clinically knowledgeable that can be completely unbiased.  I personally like to hear from the users themselves.  From my very limited exposure to other NM users I get very different responses. 

CPW
 #14 
CPW - I paraphrased her comments but she told me they are doing very well. They are seeing substantial results. That's all I can tell you because that's all I know.

I have considered asking her for their contact information, but with all the privacy stuff going on, that probably isn't going to happen.

At some point, you have to trust someone I guess.

Biff

pt
 #15 
CPW and RobDenver,
What is the cause of your tinnitus? Disease, noise exposure, etc?
CPW151
 #16 
I have considered asking her for their contact information, but with all the privacy stuff going on, that probably isn't going to happen.

At some point, you have to trust someone I guess.

Biff

Biff, you are right that the clinician can not give you any information.  BUT the way to handle this is to give your permission, written if necessary (ROI), so she can give it to her patients and ask them if they are willing to get in touch with you.  If clinician's really wants to have a successful patient talk to another prospective patient the privacy they can get around.  I know.  I have written confidentiality regulations for a state agency and those had to comply with federal statues as well. 

CPW 


CPW151
 #17 
pt asked: CPW and RobDenver,
What is the cause of your tinnitus? Disease, noise exposure, etc?

pt I have no idea.  My guess is noise exposure but then again I have always been careful to use hearing protection.  I do know that when my tinnitus started in 1994 my audio gram showed a small SHL bilateral and equal.  Those were just cricket sounds and didn't bother me much at all.  Then in 2006 I herniated a disc, had facet joint injections w/o sedation (!) and within 24 hrs. I got TINNITUS.  However, my current audiogram drops off at 2000 hrtz and drops almost straight down.  No one can explain how I can hear as well as I can without hearing aids, amplification, etc.  So to answer your question?  I don't really know.

CPW


 #18 
CPW - thank you for the tips. I may do just that.

Biff

stringplayer
 #19 
Micky posted [in part]:

Hi , well it's two years now iv'e been using a Neuromonics processor, and i'm sad to say that it's not had the desired  affect i was led to believe would happen !

..........

There are several possible reasons for that, I suppose.

One reason, of course, is that ADP (the name for the Neuromonics treatment program) might not have done for you what it was supposed to have done for you.

Or perhaps what you understand to be the goal of treatment is not what the goal of treatment is actually supposed to be - due to some sort of communication mishap along the way.

Or maybe your clinician did not do his or her job properly.  Maybe you didn't do yours.  (It happens, you know.)

Or maybe you have improved according to, say, the TRQ, THI, or some other testing parameter, but just have not realized it.

Also, it is important to realize that the above little exercise pertains not only to ADP, but to any tinnitus treatment strategy.

sp


stringplayer
 #20 
Micky, what is your understanding of the goal of ADP (Neuromonics), and according to what specific parameter(s) was that goal not achieved? Maybe if I knew that, I might be able to shed some light.

sp

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