Researcher

My concern would be the potential inadvertent dissemination of misinformation.

smn

 

So who is good? Glynnis is good!!! How do I know? I know because I am good!

So I suggest that you make an appointment to see Glynnis in six months - and cancel if things are great for you by that time as we all hope. You lose nothing by doing that!

Stephen Nagler

 

"If one reads through the posts on Tinnitus Talk, the frequency of posts that support or fail to question scams and discredited tinnitus treatments is almost breathtaking."

Never seen this ? Examples please ?

 

Well should things go south for me, I will. So in 6 months, when an ENT can see me here in BC, I will ask to be referred and wait the additional 4 months after that. No problem suffering for 10+ months. But I feel very confident I won't need to. Sorry, I have no scientific evidence why I feel this way but I feel things will get better one way or another. There are other treatment options in the meantime...and it won't be TRT for now. I will go for treating the source of the problem..and I am confident one of these will work according to the research I read. I am just a lowly lay person with a masters in engineering. so what do I know right??

 

First of all, I didn't know that Glynnis did TRT. All I know is that she is very good.

But beyond that I very much like your attitude and confidence.

Lastly, in BC is it not possible to make an appointment with an audiologist like Glynnis and pay for it out of pocket? She'd be well worth whatever it would cost!

Stephen

 

I'll try, but if she is part of the BC health system, then I might have to go the referral route which is as I said above. But thanks for the referral... That kind of referral through this site is why I come here! I will definitely try to reach out to her.

Thanks!

 

Out of curiosity , what is this Glynnis person good at ? I have very limited options here in the land of ice and snow regarding any treatments at all.

 

She dances well, but I suspect that's not what you are driving at.

I have spoken with Glynnis Tidball on several occasions at tinnitus meetings over the years. She has an excellent understanding of tinnitus, tinnitus pathophysiology, and treatment options. She is highly regarded by her peers. And the two or three people I have come across who have seen her in her clinic were well pleased.

Regarding what approach she might recommend for any given individual, I suspect that would depend on her evaluation of that individual. Best bet would probably be to check out her website for more information and/or give her a call and ask!

Stephen Nagler

 

I think it will be very interesting to start the conversation in another thread (Jim's has been truly hijacked) of what a clinician should fulfil before we would consider them a tinnitus specialist. For example if somebody (I'm not suggesting us) were to run a register, what should the criteria for inclusion be?

 

I agree with moving the discussion. But if anybody tries to run a fair and impartial clinician register, good luck to 'em. They'd have an easier time trying to find a cure for tinnitus.

Stephen

 

You could say the same about wikipedia. We have some examples now of what great resources of information many can come up with when its open to people to contribute and discourse is open with a share of overseeing (from the administration). There will be issues with it throughout its lifecycle, assuredly. I'm supportive of this regardless of any cons that may come from it. The pros seem to me to outweight anything.

[EDIT] Sorry I didn't see Steve's post before I made this. Please move it to the right thread

 

Oh my. I go out to work on some yard stuff (Spring finally arrived today), and then find all this discussion here.

JohnG: I'm not talking about Bayesian statistics, but Bayesian probability. I think a Bayesian probability model could be developed to make a solid gold version of what Steve seems to be talking about--something that would take into account the data on each person and each pronouncement about each target variable. Unfortunately, it would cost so much to build that we should definitely forgo it and get the money to researchers instead.

Actually, that's a pretty good statement of my views on what we should be spending our money for...

Jim

 

I don't have any problem with all posts being left here, but I suspect starting a new topic on clinician evaluation would get more readers and interaction.

 

I respectfully disagree. In health care the dictum is:

Primum non nocere

smn

 

This thread at least got a good discussion going. @Steve. I support what you and Markku are doing 100%, and i think its good to think critically about what you guys are doing with TN. I think the concerns ( which i don't neccasarily agree with) brought up here are legitimate and worth looking into. By thinking about them and addressing them hopefully it pushes TN to be the best it can be.

 

Or - First, do no harm. And yes, I googled that.

I've started a thread to discuss what competency a clinician should have here Assessing tinnitus clinicians

 

You'd probably be better with a machine learning algorithm such as supervised learning model with regularization (perhaps a classification problem). That would be cheap and probably much better than a probability model since it will have a large training set and would have a smaller margin of error over time as more data was collected and the computer corrects the error.

 

Interesting thought. But the machine learning might take quite a while, as outcome or other target data are going to be somewhat sparse. I'd still vote for a Bayesian model, since it can be up and running (quite well) on Day 1 and can be revised in the light of new data quite automatically--every bit as well as a machine learning model.

I wasn't serious about the Bayesian probability model, though. It would take a huge budget to do it right.

 

Just to add a non-scientific view, I appreciate all the above points and think they should be taken into very careful consideration. I have often thought to myself that I need to respond when people are being told they can't drink coffee or eat chilli etc, when obviously that's not always the case. I hope the Tinnitus Network will go some way to addressing this issue. However, TT performs an essential function in that it lets people know that there are treatments available (effective, ineffective or scam) and research is being conducted.

My doctor told me to go home take an aspirin and there's nothing more that can be done - for some people that's a suicide note. Just a little positivity goes a long way.

 

Given that I am amongst the first handful of patients to ever attempt to "cure" cochlear tinnitus using stem cells, I believe it is statistically safe to assume that your comment about the stem cell treatment in Thailand was directed at myself. I agree with you that the section called "treatments" are not really treatments (since there is no treatment for tinnitus except for a few specific instances). But Markku asked if I would do a journal about my trip - and I agreed - after which the content was put into that section.

As for your comment "Does stem cell treatment in Thailand represent an opportunity for a cure? You can infer my take on that.", I assume you are not too positive about it. Well, here is the deal: when I developed tinnitus in April last year, I knew I was in trouble. I also knew there was no cure for it. Albert Einstein once said "If you do what you always did, you will get what you always got". An indirect implication of that statement is: there is not much point in following the footsteps of all those who failed. That is why I decided to attempt something different, something which hadn't been done before... after a fair bit of research, of course. One should also remember that, back in the summer of 2013, AM101 was an insignificant spot on the radar. Had I known how things were to develop - then - perhaps I would have approached it all differently. But, AM101 is still in clinical trial, and there is no way to really tell when the product will be available (if at all - although I believe it will be successful).

Has my tinnitus been cured? No, but it has definitely improved. Can I prove that it was due to the stem cells. No, I cannot. But then again, one should not forget: that is not my job. I am a patient, not a doctor or a scientist. It is not my job to prove anything. Regardless of that, I have nonetheless tried to be as scientific about it as I can. I am one of the very few members on this board who actually post audiograms before/after treatments:

https://www.tinnitustalk.com/threads/my-introduction.1862/#post-39035
https://www.tinnitustalk.com/threads/am-101-tactt1-results-released.1994/page-20#post-38164

as well as explaining certain themes about tinnitus to a somewhat higher standard than just about any doctor would be able to:

https://www.tinnitustalk.com/thread...ng-loss-how-is-this-possible.4116/#post-39397

Given that the scientific progress of the medical community moves at the speed of an average Sunday-driver, I had to take things into my own hands last year. I shared my story. No more, no less. I keep reading (Western) doctors saying stem cell technology is unproven. Well, why is it still unproven? Mesenchymal stem cell treatments have been around for almost 10 years now. How difficult would it have been - in that timeframe - to take groups of patients, suffering from different conditions, and put them through a stem cell treatment and find out the truth? I managed to complete 2 stem cell treatments in 6 months...!

Incidently, a stem cell treatment centre has finally opened in the US (http://www.intellicellbiosciences.com/). So perhaps even Western doctors are beginning to understand the concept. Indeed, when it comes to human beings and new concepts, it seems that the German philosopher, Arthur Schopenhauer, got it just right:

"All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident."

 

@attheedgeofscience -

Here's how I look at it, Jakob.

You developed tinnitus a year ago, and over that year your tinnitus improved, as is most often the case. (It is not most often the case on support boards, of course, because support boards typically attract those who have not done particularly well - or they wouldn't be looking for support in the first place. So the population on such boards is skewed.)

Anyway, among the things you tried during your first year in order to get better was stem cell treatment in Thailand, a treatment that has not been studied in tinnitus. And, as noted above, your tinnitus has improved.

You are honest enough to state that you do not know whether or not the improvement was due to the stem cells. But I suspect you don't care. You are just happy that you have improved.

And so am I. So first, I want to say how truly happy I am for you. I think it's GREAT!!!!

My concern is somewhat along different lines. People make decisions in the interest of their own health care all the time. These decisions are personal. Nobody can tell another what to do. But I would like to in the strongest possible way discourage folks from going on what will for them likely be a very expensive wild goose chase based solely upon an anecdotal report from somebody who has improved during their first year as most do on their own anyway!

And should I ultimately be proved wrong - should stem cell therapy turn out to be truly the holy grail of tinnitus - then nobody will be happier than I as I consider all the good it would do for so many. But at this point I'm just not buyin' it.

Stringplayer's Second Law:

"The degree to which a person will apply common sense and logic in search of relief from a malady is inversely proportional to the square of that person's misery and desperation."

But to you, Jakob. To you I wish nothing but success for continued improvement.

Stephen Nagler

 

Jacob, I appreciate your note here. I do find that I agree with Stephen's post just above, however.

I have read--somewhat quickly--the links you provided. It would be dishonest of me not to say that my reaction to your explanation to ENTs of why a 10 dB hearing loss is so severe leaves me feeling the way your ENTs felt. I think your (or maybe Dr. Wilden's?) math, physics and psychophysics are incorrect. In particular, many sensory systems must function very, very well over enormous ranges in stimulus intensity. In fact, this is why a logarithmic scale like Bels is usually used to measure stimulus intensity in psychophysics. You don't just need to hear a snake moving across a quiet forest floor, you also need to hear a shout from a partner, the crack of a nearby tree or a crash of thunder. In that respect, a 10 dB increase in the threshold of hearing represents almost no compromise of the auditory apparatus whatsoever.

As to the audiograms that show improved hearing (from the stem cell treatment?), were they measured by an independent clinician?

I do agree with you that stem cell treatments are likely to revolutionize medicine. I just don't think we are there yet except for a couple of conditions where a good start has been made. And I simply don't know if restoring "normal" hearing will correct tinnitus. No one has shown whether it will or won't.

I share Stephen's pleasure regarding your improvement, and I hope it continues.

With respect,
Jim

 

Regardless of the philosophical implications of your treatment adventures, I applaud your efforts and appreciate your desire to continue posting your experiences here on our board. Thank you for your contributions.

 

@Dr. Nagler and @jchinnis - I actually agree with both of you, more or less (believe it or not...). I have myself warned people about repeating my experiment in some of my other posts and I have (also) not posted information about where I was treated (except for disclosing it to Markku in order to document that this was really happening, and not a "bad joke" of some kind). The real question, I suppose, is whether there really is a justification or a need for having a tinnitus forum. From a treatment point-of-view, I think the answer is self-evident. From a support point-of-view, the answer is more "greyish". Some people find it helpful to have online support. Personally, it brings me no value what-so-ever to know that someone across the globe sympathizes with me (or not). Indeed, I would not normally have joined an Internet forum; this is the first one I ever joined.

Supporting other forum members with information is also "tricky" when it comes to tinnitus (since it is not fully understood). Members are free to write and share what they want. I can therefore do the same. What probably sets me apart from most members of this forum, is that I have seen around 35 doctors over the past year. Some of those visits have been useful, and I am willing to share my insights. I am mindful of what I know and... what I don't know. My posts reflect that.

The audiograms were done in Germany. The stem cell treatments were done in Asia (Thailand and China). And as it happens, I have had tinnitus not just since last year, but all of my life. The stem cell treatments have had an impact on both. About 2-4 weeks after each stem cell treatment, I would begin to experience significant fleeting tinnitus incidents that would come in "waves" of 2-3 days at a time. Slowly thereafter I would see an improvement. This was a common denominator in both treatments. I therefore attribute the effect to the stem cells.

Since my hearing was normal to begin with, I would not have expected to feel a difference in everyday situations with the 20-25db improvement I obtained at 6-8kHz. But, I was wrong. I can clearly feel that I have had to adjust the volume down when eg. listening to headphones (and I have always been careful with my hearing otherwise). However, in everyday conversations, it makes no difference (in my case, at least).

If my stem cell journal posts bothers you, feel free to have it taken down. I honestly and sincerely do not mind. The only reason I posted it is because I have done something which "not just everyone has". Indeed, to follow me in my footsteps would be pretty difficult. The reason is that just about no treatment centre - anywhere - will carry out a stem cell treatment for tinnitus. They will only do it for conditions for which there is a known treatment protocol. So to do what I have done, is actually pretty difficult. Trust me. I know.

 

Can't speak for anybody else, but they don't bother me at all.

In fact, I've heard you posted a journal - but I don't know where on the board it is. Do people comment within it? Or is it similar to my Doctors' Corner forum, where folks ask questions and I answer - but where nobody can comment on my answers?

I think that if you are going to sort of blog on the board about such a controversial topic, folks ought to be able to comment on your posts within the blog.

Stephen Nagler

 

I think this is what you are looking for:

https://www.tinnitustalk.com/threads/my-trip-to-bangkok-stem-cell-treatment-comments.1891/
https://www.tinnitustalk.com/threads/my-trip-to-bangkok-stem-cell-treatment-journal.1884/

 

@attheedgeofscience I'm certainly not in favor of removing your journal. I think you are uncommonly clear and uncommonly civil in discussing something so fraught with controversy. It bothers me not at all.

I think it would have been better if Tinnitus Talk had others' comments in the same stream and had done everything to encourage an open discussion of all sides.

I think that providing a place for (civil) open discussion is the main value of boards like this.

Jim

 

What Jim said.

smn

 

I would "kill" for a 20 dB improvement in my hearing, I am an audio engineer and every dB counts.

 

Thank you for your postings. I read them with great interest and appreciate you taking the time to describe in detail your experiences. It is a pity that some detracted from your posts with cynical responses - scientific "discovery" occurs along the lines of any "discovery" - risk and creativity and finally sharing. I hope you continue to write.