Why Are All These Potential Treatments Taking So Long?

[valeri]

Didn't want to derail Autifony thread any further but just wanted to expand on @RCP1 's opinion that it's hard to understand why in 2015. we still have no universal relief (let alone cure) for millions tourtured by noise.

One would think that GSK, for example, would jump on board and do a proper trial of RTG at least.

After results that we witnessed here on board I'm lost for words that nothing came out of it, just some lousy journal publication (by no means I'm dismissive of our team trobalt effort).

Dr TT has been working on an alternative version of RTG for how many years now?

Then we have all sorts of stimulation procedures that have been going on for over 10 years with no conclusive results yet.

Why are these things taking so long is just beyond me?!

 

[jeannie]

i agree Valerie.. no wonder we are all so despondent. there is nothing concrete to help us.. why???? I know inner ears and brain is a very complex area, but so is the heart. I truly hope n pray something happens soon for us that is good news,, what a horrible way to have to live, I know it could be worse. im thankful ,

 

[attheedgeofscience]

After results that we witnessed here on board I'm lost for words that nothing came out of it, just some lousy journal publication (by no means I'm dismissive of our team trobalt effort).

The idea behind getting the results published in a recognized journal is to create awareness. The corresponding author of the editorial is an ENT professor; the article is peer reviewed. These two factors create credibility towards the audience of the journal (which consists of the medical- and pharmacological-community).

So I would say it is too early to decide if "nothing came out of it" (i.e. it has not even been published yet...).

Then we have all sorts of stimulation procedures that have been going on for over 10 years with no conclusive results yet.

Given the 10 year time frame you mention, the achievement of Team Trobalt is all the more impressive. We managed to set up connections with researchers (even though we have no background in the medical field), obtain an MoA of Trobalt in relation to tinnitus, properly research the topic of potassium channel modulators, study the data collected, and submit a manuscript to a recognized journal of pharmacology (with the help of TRI). All in the time span of 2 to 3 months (not 10 years!). The odds that were against us from the beginning means the whole deal was close to mission impossible. But still, we did it.

 

[valeri]

@attheedgeofscience

My question is by no means ment to dismiss the amazing effort you guys put in towards making a change, and I'm sorry if that's the impression you got.

It was simply a disappointing statement, a pure disbelief that 15 years into 21st century there is still one big NOTHING for tinnitus relief.

Lot of this and that, bits and pieces here and there but nothing proven, nothing viable except f....g habituation

 

[MattK]

Valeri,

how much did you think about tinnitus before you were afflicted with it? If you were like most people, probably not much at all. Unfortunately, this is largely why tinnitus isn't taken that seriously. It's generally not life threatening, and to make it worse, it's out of sight, out of mind. People can't see it or hear it, so it just doesn't get the attention it deserves.

It sucks, but I think these are the main reasons it's not taken seriously. Furthermore, if tinnitus is in the brain then you're also talking about the most complicated organ in the body.

As much as we've advanced in some ways, we've also not come as far as we sometimes think we should have.

Think of it this way... The movie Back to the Future 2 came out in 1985. And when Marty traveled to 2015, there were flying cars and hover boards. Obviously this was just a movie, but at the time it seemed plausible in 30 years. But as far as cars and skateboards go, we're basically where we were 1985. We're always imagining that technology will be so much different in the future but it's largely the same in most areas.

 

[CarolinaGuy]

I am no historian of medicine, but it seems that the greatest advances in medical science over the last 100 years have come in preventing and fighting communicable diseases.
We have been able to fight back against the invaders that once killed so many, so young. Even though some of those microorganisms are making a comeback now due to resistance/evolution.
Thanks to electronics and computers, we have also developed much greater tools for diagnosis now.
However, when it comes to treating things that go wrong internally, with the body's own systems, progress is slow.
How long has there been a war on cancer now? Survival rates have improved, but still no cure.
Diabetes remains treatable but there is no cure.

The brain is the least understood of all organs.

 

[Stink]

THE BRAIN IS NOT UNDERSTOOD AT ALL

alzheimer's

parkinson's

MS

tremors

ALS

Are there cures or 100% effective treatments for those? NO!

how can anyone expect tinnitus to be cured ANYTIME SOON when we SO KNOW LITTLE of the brain and these diseases

we are lucky if there are working treatments for tinnitus in the next 20 years! a CURE is probably 100 years away

please... STAY REALISTIC

 

[NiNyu]

a pure disbelief that 15 years into 21st century there is still one big NOTHING for tinnitus relief.

Lot of this and that, bits and pieces here and there but nothing proven, nothing viable except f....g habituation

They don't care about us! The only ones that do are scammers, trying to sell off the latest fakes.

@MattK has a point, those not afflicted do NOT understand, do NOT care, nor are they capable to comprehend how devastating T is. For them it's not contagious, not life threatening, you can't see or hear it, it's just a sound in the head, thus it can't be that serious. At least that's the reaction I get all the time.

We all know T dwells in the auditory cortex. Neurons in the auditory cortex are organized according to the frequency of sound to which they respond best. The frequency map (tonotopic map), which interacts with the sensory cells in the cochlea, as long as they are still working. If they cease to send data to the auditory cortex the neurons in the tonotopic map go apesh*t.

So, what's the solution here? If you ask me, I'd say lobotomy. Cut out the damn auditory cortex! Get rid of this motherfuc*ing apesh't crazy neurons. Period. It might be risky. So what? Do you really call this life? T is fuc*ing with our senses 24/7 no break. It is a damn sense! Like pain you do feel it in your brain.

@Stink, for some of your mentioned ailments are actually treatments available. For T is nothing there. Just bogus stuff, and of course heavy meds that do NOT address T.

 

[attheedgeofscience]

We all know T dwells in the auditory cortex. Neurons in the auditory cortex are organized according to the frequency of sound to which they respond best. The frequency map (tonotopic map), which interacts with the sensory cells in the cochlea, as long as they are still working. If they cease to send data to the auditory cortex the neurons in the tonotopic map go apesh*t.

That, in a nutshell, is actually pretty much the layman's terms of the theory behind the HIFU procedure which you - the best I can tell - did not really support...

@nills HUFI sounds like science fiction. There are no former T patients that have been cured so far. This is all a theory that there might be a chance to cut about in the brain without performing a lobotomy for an exaggerated price. If that really worked where are the offical clinical trials? Where are all the ex T patients?

 

[NiNyu]

@ attheedgeofscience, if the HUFI procedure works, which I highly question so far. But an old fashioned lobotomy could work.

 

[linearb]

They don't care about us! The only ones that do are scammers, trying to sell off the latest fakes.
Cut out the damn auditory cortex! Get rid of this motherfuc*ing apesh't crazy neurons. Period. It might be risky. So what?

I'd say the biggest risk is that it just doesn't work; completely severing the auditory nerve does not work in most cases. If you tried to remove all the parts of the brain involved in sustaining the signal, you'd be worse than lobotomized; you would probably be insane and the person you'd end up as would not have much in common with the person you started out as.

The best path forward for people driven to try to find solutions beyond simple acceptance, is behaviors or therapies that change brain structure/function through behavioral, chemical or technological means. You could look at my DIY neurofeedback thread over in the alt therapies thread; I think that's a very practical thing to explore, the technology is accessible and has a demonstrated track record of reducing seizures and other unwanted excess neuronal activity. For that matter, so does meditation, based on numerous PET scans. Did you know that tinnitus distress is directly correlated with reduced gray matter density in the right anterior ansula -- and long term mindfulness meditation is direction correlated with increased gray density in the same structure? Chew on that for a while. There's imaging studies to support both claims.

An old fashioned lobotomy is probably as likely to cause worse audio problems as to solve anything, but in any case, you would not be yourself at the end of the procedure.

 

[RichL]

If you tried to remove all the parts of the brain involved in sustaining the signal, you'd be worse than lobotomized; you would probably be insane and the person you'd end up as would not have much in common with the person you started out as.

Not true at all, It is already being done to treat epilepsy and has been quite successful!

http://www.healthline.com/health/types-epilepsy-brain-surgery#Hemispherectomy4

http://www.dailymail.co.uk/health/a...n-removed-stop-having-seizures-5-minutes.html

And the slam dunk....http://www.scientificamerican.com/article/strange-but-true-when-half-brain-better-than-whole/

http://singularityhub.com/2013/03/2...ain-removed-and-changed-neuroscience-forever/

Yes half the brain removed and no change to the personality or daily function!

In fact, research is pointing to real positives coming from removal of parts of the brain!

http://www.nature.com/news/2010/100210/full/news.2010.66.html

As far as I can see there is no real reason why we are still waiting for a cure when they have quite an array of knowledge about the brain now, except that Tinnitus poses no real health threat and is, or was, considered nothing worth pursuing for most scientists, thank God that is changed.

 

[attheedgeofscience]

@ attheedgeofscience, if the HUFI procedure works, which I highly question so far.

Great. Nothing wrong with questioning the facts - I do it myself all the time in my line of work. But the important thing is to question the facts on the right basis, and seeing you misspelt HIFU (twice), I start to wonder if you actually know what the professor does? Have you met him? Have you spoken with him?

Can you for instance tell me the single "unifying" diagnosis that the professor attempts to establish for all of his patients? (Hint: it is the same diagnosis i.e. positive finding he looks for regardless of the neurological disorder).

What makes HIFU surgery so uniquely different to other types of brain surgery?

 

[valeri]

@attheedgeofscience

What is the success rate of HIFU in treating t?

 

[valeri]

How long has there been a war on cancer now? Survival rates have improved, but still no cure.
Diabetes remains treatable but there is no cure.

The brain is the least understood of all organs.

Agree but also don't forget that modern medicine is a bussines like any other, money and profit orientated.
Cancer cure would mean a loss of billions of dollars collected for "research", following how many jobs, foundations, associations, organisations..... and all the other bureaucracy expenses.

There is still no cure for a common cold virus, but thats not to say that there's nothing to make it a bit more bearable.

Same goes for other diseases, only tinnitus patients are told to go home and live with it.

 

[Stink]

@attheedgeofscience

What is the success rate of HIFU in treating t?

don't expect answer from him (he only answers what he wants to, he's pompous)

ive read many past threads here and when people ask @attheedgeofscience something , he maybe answers 5% of time.
there is no success rate for HIFU -it's a new treatment of tinnitus! no one knows!

 

[attheedgeofscience]

don't expect answer from him (he only answers what he wants to, he's pompous)

You are too kind.

Anyway... if you were to go to my profile - which you obviously wouldn't - then you would see that I have written more than 1000 posts on this forum and categorized all the information so that anyone can easily find all the unique information I have shared on stem cells, HIFU, LLLT, clinical trials (AM101+OTO311), potassium modulators, and many more things:

Welcome to my profile on TinnitusTalk.

If you are reading this, then you - or someone close to you - is probably suffering from tinnitus. You may of course also have come here because you are specifically interested in "my story". Alternatively, you may be looking for specific information that I have provided, but which you cannot find amongst the +1000 posts of mine here on TinnitusTalk. And so in the rest of this information sheet, I will be dividing it into three sections - one for each of the topics above.


1. Tinnitus

Going into the basics of tinnitus would be pointless in the year 2014. The Internet has been around for almost 20 years, and pretty much any kind of information on tinnitus can already be found by searching the appropriate key words. In this section, I will therefore be focusing on some of the more uncommon pieces of information on tinnitus.

First-Aid

By far the most prevalent cause of tinnitus is noise exposure - either long term or short term exposure (also known as acoustic trauma from eg. exposure to a firecracker or a loud 2-hour concert). Tinnitus which develops from an acoustic trauma has a reasonable chance of going away by itself. Most often with this kind of auditory insult, there will be an accompanying degree of hearing loss which is known as a temporary threshold shift - and that is what is felt as "muffled hearing" (something which is commonly experienced after attending a concert). As the hearing loss begins to recover, the associated tinnitus will be begin to decrease in loudness in too. However, from time-to-time, there are cases where the tinnitus does not go away. At least not immediately - and unfortunately, sometimes not at all. So if you have developed tinnitus from short-term noise exposure, when should you be alarmed? In my (non-medical) opinion, tinnitus is a cause for concern if it persists beyond 24 hours. Many people - including doctors and ENTs - take the approach of "waiting it out" to see if the condition improves on its own. Doing so could quite possibly be the biggest mistake you will ever make in your lifetime. During the first 48 hours after onset, there is a window of opportunity where a course of steriods may be effective and reduce the severity of your tinnitus or even eliminate it altogether. My advice therefore is to seek out an ENT immediately at the 24 hour mark (or before). Get a same-day appointment - or if necessary, seek help from the emergency services.

Audiograms

Doctors and ENTs of today tend to assume that (subjective) tinnitus can be diagnosed using an audiogram. It cannot. Audiograms were invented to diagnose hearing loss in the speech frequency range. Not tinnitus. Often patients are told by doctors: "you have normal hearing" or "you don't have hearing loss" and hence implying that the cause of tinnitus must be related to something else. Tinnitus is almost always related to auditory damage - whether visible or not on the audiogram. The reason is that even small dips of 15-20db of hearing loss is significant. Even if that kind of hearing loss is "normal for your age". Additionally, 99% of all audiograms are only evaluated for the 0-8 kHz range (the so-called speech frequency range). That means hearing loss in the upper frequencies (8-20 kHz) is left undetected.

Lastly, a good piece of common-sense advice: use earplugs! Using the words of Dr. Wilden himself: "The more you use them, the more you will start to appreciate them".

For more information on audiograms and interpretation of results, see this link:

www.tinnitustalk.com/threads/inner-ear-hair-cell-regeneration-—-maybe-we-can-know-more.3131/page-11#post-48135

Children

Tinnitus in children is often described by ENTs as "very rare". Not too much is known about tinnitus and children, but it is probably safe to say that tinnitus in children is more common than we think. Personally, I would neither describe it as "very rare" or "rare", but instead I would perhaps use the term "uncommon".

When it comes to tinnitus, the general public perception is that it is always somehow related to noise exposure. This misunderstanding means that tinnitus in children tends to be an overlooked problem. For this reason, I will list some of the additional possible causes of tinnitus below:

• Ear infections
• High-fever at some point in childhood
• Certain childhood diseases
• Congenital hearing loss
• Head injuries
• Ototoxic medication

2. My Own Story

I developed severe tinnitus on April 23rd, 2013. It was a Tuesday. And it is a day that I - in retrospect - will never forget. The exact cause of my tinnitus is still unknown to me, but I will be providing some clues later on. What isknown, is that after going through the usual examinations with an ENT, chiropractor, dentist, and neurologist, I was left without a diagnosis (of the cause). Idiopathic cases of tinnitus are not uncommon. But without a diagnosis, it is almost impossible to treat "the disease" - not to mention that even if a diagnosis was given, tinnitus is still largely considered incurable. I therefore quickly realized I had no choice but to become my own doctor and apply unconventional approaches if I wanted to hear silence again. And so my journey into the world of experimental medicine began.

My doctors here in Germany left me without any answers. I therefore - like many others - began to educate myself and search for possible "cures" using the Internet. I knew I had to try something different, something unconventional - if I didn't, I would simply be following the footsteps of the many others before me. The "many others" who had failed, that is...

Low-Level-Laser-Therapy (LLLT)

I came across the topic of LLLT one day while researching tinnitus on the Internet. In this sense, I was fortunate to be living in Germany. In Germany there is (or rather, was) the clinic of Dr. Wilden. The therapy was not cheap and had a tainted reputation on the Internet. But with no other options available to me, I decided I had nothing to lose. I have described my own experiences extensively on this forum (as well as the experiences and testimonials of many others). See links in the next section if you are interested in this therapy.

Result: Up to 25db reduction of hearing loss (at 8 kHz); before/after audiograms can be found in my introduction (see links in section 3. below).

Stem Cell Therapy

While I did benefit from LLLT in terms of a hearing improvement, the therapy did little for my tinnitus. After two months of therapy I therefore decided to pursue other options. As mentioned earlier on, I knew tinnitus is considered incurable by the current medical establishment and so I had to look for uncommon therapies which had not been attempted before i.e. clinical trials or experimental therapies - essentially therapies at-the-edge-of-science. One day while doing research on the Internet, I somehow ended up reading about stem cell therapy. I don't remember the exact circumstances, but one way or another, I found a link to a youtube video featuring the unique story of Chloe Sohl who - so far - is the most successful stem cell recipient for the experimental treatment of hearing loss (presumably because her condition was triggered by an autoimmune disorder). She had regained most of her hearing from the treatment. But there was no mention of tinnitus in the video. I assumed that she probably had suffered from tinnitus as well (after losing almost all of her hearing). I decided to look into this a little further and I was fortunate to discover that her tinnitus improvement was pretty much equal to her hearing loss gain (i.e. approximately 90% improved some 2-3 months post stem cell injections). This was my most important lead and within a couple of weeks I had found and corresponded with three different stem cell clinics who would be willing to offer me a treatment similar to that of Chloe Sohl. I ended up doing two separate stem cell treatments roughly 5 months apart. I have shared my story for both trips (as a journal on this site) and also my reflections on stem cell therapy in general.

Result: Approximately 50% improvement in tinnitus loudness (both ears).

Potassium Modulators (Flupirtine)

Another treatment option I looked into was the off-label usage of Flupirtine (a muscle relaxant) for the treatment of tinnitus. This idea arose from the increasing interest I developed in the phase II clinical trial of AUT00063 (which uses a first-in-class potassium modulator) as well as the very interesting experience shared by another member of TT who had seen dramatic improvements using another potassium modulator similar to Flupirtine.

Result: I only experienced very minor inconclusive improvements - most likely because I did not carry on with the treatment for a long enough period of time. I decided to discontinue my treatment for other reasons. Update (24/FEB/2015): slight to moderate improvements experienced after 4th round of treatment.

AM101

Being a Dane living in Germany, I was not allowed to participate in the clinical trial of AM101 (sponsored by Auris Medical) even though Germany is one of the "host" countries for the trial. However, I managed to track down two doctors involved with the clinical trial (one in Germany and one in the US), and who would be willing to offer the exact same treatment as in the clinical trial - provided Auris Medical would be willing to release the drug for off-clinical trial purposes. This request was unfortunately denied. Following that, I went through a lot of "red tape" to get the decision overturned. That failed too, however.

Result: None (treatment was not carried out); but I have gained a lot of valuable insight into how clinical trials work. I also remain in contact with the highly competent ENT-surgeons at the Acquaklinik in Leipzig, Germany. I will be seeing one of the doctors there for a possible consideration of trying out procedure similar to the one carried out in the OTO-311 clinical trial.

HIFU

A last option I am considering is the treatment of tinnitus using non-invasive neurosurgery of the brain. As I understand it, the treatment protocol is still under development, but early results have been demonstrated on patients with other conditions than tinnitus. Some of these patients suffered from tinnitus (also) and experienced improvements - along with improvements of their primary condition. The treatment is done in two stages: clinical full day evaluation followed by surgery at a later point in time (provided evaluation confirms that the patient is a candidate for surgery).

Results: None (I am not a candidate for surgery). An account of my full day consultation and evaluation (incl. high resolution EEG-scan) can be found via the links in section 3, below.


As a final note in this section, I will provide a link to a post in which I offer some clues as to the possible causes behind my recent and life-long tinnitus:

www.tinnitustalk.com/threads/severe-tinnitus-people-—-describe-your-tinnitus.6045/#post-64376


3. Important Links

LLLT

www.tinnitustalk.com/threads/low-level-laser-therapy-lllt-for-tinnitus-dr-wilden.295/
www.tinnitustalk.com/threads/my-introduction.1862/

Stem Cells & Clinical Trial Information

www.tinnitustalk.com/threads/my-trip-to-bangkok-stem-cell-treatment-comments.1891/page-6#post-54877
www.tinnitustalk.com/threads/my-trip-to-bangkok-stem-cell-treatment-journal.1884/
www.tinnitustalk.com/threads/my-trip-to-bangkok-stem-cell-treatment-comments.1891/page-7#post-59803

Potassium Modulators (Flupirtine & Trobalt)

www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-general-discussion.5074
www.tinnitustalk.com/threads/flupirtine-another-potassium-channel-opener.5642
www.tinnitustalk.com/threads/flupirtine-another-potassium-channel-opener.5642/page-2#post-95882

AM101

www.tinnitustalk.com/threads/am-101-tactt1-results-released.1994/

AUT00063

www.tinnitustalk.com/threads/autifony-therapeutics-phase-i-study-for-aut00063-for-the-treatment-of-hearing-loss-and-tinnitus.1607/

HIFU

www.tinnitustalk.com/threads/new-upcoming-treatment-hifu-high-intensity-focused-ultrasound-surgery.276/page-8#post-75063

OTO-311

www.tinnitustalk.com/threads/otonomy-starting-phase-2-trial-in-2015-for-tinnitus-—-no-limit-on-your-onset.6365/page-2#post-88374
www.tinnitustalk.com/threads/otonomy-starting-phase-2-trial-in-2015-for-tinnitus-—-no-limit-on-your-onset.6365/page-3#post-93572

Complete Review of All Otology-Related Clinical Trials

www.tinnitustalk.com/threads/overview-promising-treatments-for-tinnitus-and-hearing-loss.3982/page-3#post-87702


attheedgeofscience
24/FEB/2015

(I am no longer with TinnitusTalk).

The difference between me and 99,9% of members on this site is that I have not only read about the science, I have actually done it!

ive read many past threads here and when people ask @attheedgeofscience something , he maybe answers 5% of time.

Perhaps that was because I have been busy working on behalf of the tinnitus community (along with the rest of Team Trobalt) in getting a study published on a possible pharmacological treatment for tinnitus. Personally, I have put in well over 200 hours in that project.

I have also been busy with Team Awareness tracking down the very latest info from Otonomy and Auris Medical (both were my own initiatives). See Q&A thread elsewhere on this site.

 

[linearb]

Not true at all, It is already being done to treat epilepsy and has been quite successful!
As far as I can see there is no real reason why we are still waiting for a cure when they have quite an array of knowledge about the brain now, except that Tinnitus poses no real health threat and is, or was, considered nothing worth pursuing for most scientists, thank God that is changed.

Then you're dramatically overestimating the degree to which tinnitus is understood. We have some pretty good models now that appear to be supported by fMRI studies, but they are only models. Epilepsy is relatively straightforward in comparison.

If you guys want to be first in line to get part of your brains chopped off, though, be my guest!

I had a researcher in LA offer to fly me out there to participate in a deep-brain stimulation study last fall. God bless the people who do end up being the test subjects! I might be a bit batty from my T, but I think I'd need to be whole-hog bonkers insane to line up for experimental, voluntary brain surgery -- the risks of creating problems much more terrifying to me that tinnitus, are real and perhaps double-digit in the cases of many of these treatment attempts, especially HIFU and other brain ablation techniques. If you can't imagine anything more terrifying than T, it might be instructive and useful for all kinds of reasons to spend some time volunteering with people who have had massive TBIs and stuff.

The brain is awesome, and I like mine a lot. I'm obviously not nuts about all the noise, but I don't think I'd cut off my auditory cortex to spite my anterior insula...

 

[Jesse Pinkman]

They don't care about us! The only ones that do are scammers, trying to sell off the latest fakes.

I dont think the problem is lack of effort and not caring. They may not care about us, but they care about making money. With tinnitus being as common as 10-15% og the general population, finding a cure or good treatmensts could be a billion dollar industry. Im pretty sure they want to find a cure. The problem lies rather in capabillity. Tinnitus is a brain problem and the brain is very complexand poorly understood.

 

[RichL]

Then you're dramatically overestimating the degree to which tinnitus is understood. We have some pretty good models now that appear to be supported by fMRI studies, but they are only models. Epilepsy is relatively straightforward in comparison.

No I'm not, I simply proved the inaccuracy of your statement quoted here....

If you tried to remove all the parts of the brain involved in sustaining the signal, you'd be worse than lobotomized; you would probably be insane and the person you'd end up as would not have much in common with the person you started out as.

They know allot more about Tinnitus than you are giving them credit for!

 

[NiNyu]

What makes HIFU surgery so uniquely different to other types of brain surgery?

The difference between me and 99,9% of members on this site is that I have not only read about the science, I have actually done it!

Where are the facts? Where are the clinical trials? Where are the high intensity focused ultrasound cured T patients?
nills called it HUFI hence I wrote HUFI. But honestly, who cares? Are you associated with the prof in Switzerland?

You actually done it? And you still ask me questions?

 

[linearb]

I doubt it, reading the research is one of my hobbies and I have talked to a lot of the people doing the research.

Either there's a vast conspiracy to hide tinnitus cures, or the science isn't quite there yet... Or else we'd have a cure!

Conspiracies are not very likely.

 

[attheedgeofscience]

Where are the facts? Where are the clinical trials? Where are the high intensity focused ultrasound cured T patients?
nills called it HUFI hence I wrote HUFI. But honestly, who cares? Are you associated with the prof in Switzerland?

You actually done it? And you still ask me questions?

Have you never been taught not to answer a question with a question?

I simply wanted to establish whether you actually know anything about the HIFU-procedure that you posted two factual statements about:

@nills HUFI sounds like science fiction. There are no former T patients that have been cured so far. This is all a theory that there might be a chance to cut about in the brain without performing a lobotomy for an exaggerated price. If that really worked where are the offical clinical trials? Where are all the ex T patients?

However given that you are unable to answer my (basic) questions about HIFU (the answers to which are easily available on this site and elsewhere), I somehow doubt that you know very much about the procedure (and consequently I do not see how you could write what you were quoted on above...). There is no need for armchair critics or wannabe experts on TT. If you do not know the subject matter at hand, why not just stay out of the discussion altogether?

However, since you were unable to answer my questions, I guess I will have to answer them myself.

Can you for instance tell me the single "unifying" diagnosis that the professor attempts to establish for all of his patients?

Prof. Jeanmonod's basic diagnostic aim is to look for a clinical manifestation called thalamocortical (brain wave) dysrythmia. A positive finding looks like the following:

https://www.tinnitustalk.com/thread...sed-ultrasound-surgery.276/page-10#post-94538

(Red line - indicating a pathological condition - is above the green line; green line = control group).

Compare that with my own image (which shows only a weak clinical manifestation of TCD):

https://www.tinnitustalk.com/thread...used-ultrasound-surgery.276/page-8#post-75063

What makes HIFU surgery so uniquely different to other types of brain surgery?

Prof. Jeanmonod is a world class neurosurgeon who operates using high intensity focused ultrasound (HIFU). This - uniquely - means that he does not operate by drilling a hole in the patient's skull. No one else can do this. The procedure is therefore less invasive than regular brain surgery (and less risk of complications with e.g. post operative infections).

Where are the high intensity focused ultrasound cured T patients?
nills called it HUFI hence I wrote HUFI. But honestly, who cares?

HUFI or HIFU? I agree - who cares. I mean who cares if someone drives a BMW or a WBM. Makes no difference...

 

[NiNyu]

So @attheedgeofscience you went all the way down to Switzerland, did all the fancy tests, spoke to Prof. Jeanmonod a world class neurosurgeon, and you were told that you are not an eligible candidate for the HIFU surgery 'cause your brain wave activity wasn't that significant? But he suggested it might be ENT-related (cochlea & co), or you are in need of a lush Thai-massage, or it's all just a mental problem (emotional)? Honestly, I could have told you this for less than EUR 2200.

No, no I think you were the only patient at the clinic that day 'cause no one else was willing to pay such an exaggerated price for a mere consultation. Seriously, how much money have you burned so far on treatments that did not work?

Prof. Jeanmonod is a world class neurosurgeon who operates using high intensity focused ultrasound (HIFU). This - uniquely - means that he does not operate by drilling a hole in the patient's skull. No one else can do this. The procedure is therefore less invasive than regular brain surgery.

And there's nothing new under the sky. HIFU is so unique that it isn't just applicable on every skull/brain. Again, where are the studies? Where are the cured T patients? Where are the clinical trials? All I see is someone that claims something for big money without any legit proof.

 

[attheedgeofscience]

Honestly, I could have told you this for less than EUR 2200.

I doubt you can even tie your own shoelaces.

 

[svintegrity]

@attheedgeofscience I have been watching this thread with interest. Might I ask what is your line of work? I have been a researcher and professor in the health sciences for over 25 years. I would be interested in learning more about what you have done and published. I would be interested in helping with any research, publishing, getting the word out, on tinnitus should there be a need with your "team." But I understand if not. I would still be interested in learning more about what you have done. I have an all new appreciation for tinnitus since way back when, when one of my fellow graduate students did her PhD dissertation on tinnitus and biofeedback in the 1980s. I knew nothing about tinnitus, but I remember thinking back then, I hope I never get that! I am finding now that over the past year that T & H have brought me to my knees. I tried to PM you, but your settings do not allow for that.

 

[NiNyu]

@attheedgeofscience, what are shoes? xD
Seriously though, you are NOT being rational here. I am more than certain if a decent neurosurgeon cut out your auditory cortex, w/ or w/o HIFU or HUFI your T would be gone as well; no matter your brain wave activity. But perhaps Prof. Jeanmonod (a world class neurosurgeon) would disagree and claim that even w/o auditory cortex Mr. Edge-effect would still hear something. But then again I am not a world class neurosurgeon that charges ridiculous fees w/o having any substantial proof.

 

[attheedgeofscience]

Might I ask what is your line of work?

Finance; data analysis; mergers & acquisitions; complex project management in super-size organizations.

I would be interested in learning more about what you have done and published.

If you wish, you could have a quick read of the following publicly available information:

https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-petition-to-the-ata.6896/

Especially page 4 (and onwards) are relevant. We also have a non-publicly available Team Trobalt section here on TT (with about 500 posts in total). That section is a lot more detailed but also contains slightly sensitive information. You are welcome to try to get a sense of the scope of the project via the public thread and then get back to myself or another member of Team Trobalt.

I don't mean to sound difficult, but generally access to non-public information is on a need-to-know basis only (i.e. someone joining the team, basically). For reasons, I do not wish to get into in public, I would suggest you post a brief response in this thread if you feel Team Trobalt is something you would like to consider. I can disclose more details in a PM following that.

 

[attheedgeofscience]

I am more than certain if a decent neurosurgeon cut out your auditory cortex, w/ or w/o HIFU or HUFI your T would be gone as well;

...Agreed. Along with your entire hearing capability, that is.

My friend: it is way past your bedtime. Please make sure you attend school tomorrow; you sure could use a few lessons in a subject not-so-often found on the curriculum: common-sense.

 

[NiNyu]

...Agreed. Along with your entire hearing capability, that is.

Of course, your hearing would be lost too. But now ask yourself the question why did Prof. Jeanmonod dismiss your case? Those three additional explanations that Prof. Jeanmonod threw at you I have heard several times before from other incompetent ENTs. So much to common-sense. As said, try a lobotomy and your T is gone.
I presume you have done an MRI so you can exclude ENT-related. You have been to Thailand? Bet you got a good massage there, so you can cross that off your list as well. Now go and figure.