HIFU (High-Intensity Focused Ultrasound) Surgery

[yonkapin]

What the professor did not know about me is that I have completed a fair bit of psychological assessment myself: I have done no fewer than 200 properly rated IQ tests, roughly 15 analytical/partial IQ tests, 7 different personality profile tests, and 20 hours of psychological assessment.

If you don't mind me asking, why did you have all these psychological assessments?

 

[bedouin]

Thanks for your detailed report. I don't have that kind of money to gamble with on a maybe. I'm glad you felt it was worth while. That is what counts.

Apologies, the reason I say this is because the 2200CHF is non refundable. Is that correct?

 

[attheedgeofscience]

If you don't mind me asking, why did you have all these psychological assessments?

I have always felt "different". The partial IQ tests revealed some specific narrowly defined (mental) deficits but certainly also some "opportunities". My MBTI profile of INTJ combined with some psychological assessements has helped me steer my career path in the very right direction.

When people realize what they are truly good at, going to work becomes like a hobby. Imagine getting paid for what you enjoy doing. It's true win-win...

 

[attheedgeofscience]

Apologies, the reason I say this is because the 2200CHF is non refundable. Is that correct?

I did not ask. But, I can only imagine that it is not refundable. I cannot see why it would/should be. After all, the professor has provided a service (ie. the diagnosis and EEG). And for that service he needs to be paid, of course.

If a person gets an MRI that comes back "clean", he/she will also need to pay for that service. Same story.

 

[Zimichael]

ATEOS...Fantastically detailed and informative report, as always. You set a high bar. Good!

There is one conclusion professor Jeanmonod has that I wonder about. That is the necessity for an "emotional trigger" to co-initiate tinnitus. I think I would not be wrong in also referring to this as the "stress" component that has come up in a lot in causality ponderings. Indeed there seems to be a number of folks on TT reporting that they got their T while in a "stress" situation. (Glutamate sloshing around maybe???). However, I wonder about this for my first, stage 1. tinnitus, that set the floor for the rest of it later. I was age 6 and having a whale of a time. For sure I was not stressed or "emotional" (if exclude having fun!) as we had an incredible, free range, African childhood. The post firecracker ringing stressed me after the fact as I would gripe to my mother about it for some months I believe, before I got over it.
So in this instance I wonder about Jeanmonod's "requirements"...Any comment?

Rather sobering conclusions there at the end but can't disagree that the brain is complex as hell. Kind of like the "gut", my other nemesis!

Finally, am wondering if your recent periods of near disappearance of T are ongoing 'developments' c/o your stem cell treatments and LLLT, or if perhaps the "Kv thing" is happening with the Flupirtine?...I look forward to your reports.

Thank you! Zimichael

 

[bedouin]

I did not ask. But, I can only imagine that it is not refundable. I cannot see why it would/should be. After all, the professor has provided a service (ie. the diagnosis and EEG). And for that service he needs to be paid, of course.

If a person gets an MRI that comes back "clean", he/she will also need to pay for that service. Same story.

Agreed. However, the cost of an MRI is significantly less. Reel back to the earlier posts on state subsidized treatments and i get it. I just don't have that non-subsidized money to spend on a potential no-go and be told my t is emotional, which would have cost me 1 or 2% that amount. But like i said before, i you got value in it, then that is what counts. Thanks again for sharing your story. I appreciate it.

 

[bedouin]

As mentioned in an earlier post, I had an appointment yesterday with the Swiss Professor of Neurosurgery, Dr. Jeanmonod. The appointment took place in Solothurn (Switzerland). I arrived the day before and stayed at a hotel nearby in order to be ready for the 09:30 appointment and full-day consultation/examination. I was greeted by the professor himself and we spoke briefly for 5-10 minutes about the day's agenda. First item on the schedule was a high resolution EEG scan. The scan is similar to the ones performed by regular neurologists, but instead of using 16-20 electrodes, this examination uses 64 (and can therefore collect more brain wave data). There is hence more preparation time involved as each of the electrodes needs to be covered in jelly-like substance in order to ensure electrical conductivity (x 64!!!). The scan itself took 3x5 minutes (ie. 5 minutes EEG-data collection with eyes closed, followed by a 5 minute scan with eyes open, and then a final 5 minute-scan with eyes closed again).

On a slight side note, I should mention that, the staff – incl. Professor Jeanmonod - is very nice to be around. This is similar to the population of the German speaking part of Switzerland. I have myself lived in the French speaking part of Switzerland for eight years, but despite that, I actually did not do much travelling within the Swiss borders during that time – and hence I am somewhat unfamiliar with much of Switzerland and its culture. Only minor problem (for me) with the German speaking part of Switzerland is the Swiss-German dialect which – even for Germans – can be tough to comprehend at all times.

The EEG-scan including preparation time took approximately 45 minutes to complete; the data was clean and without too much interfering electrical muscle activity from facial and/or eye-movements (patients must remain still during the exam – and no coffee in the morning). Then I had my first chance to really speak with the professor one-on-one. We spoke for 1½ hours. It was mainly me doing the talking, and I gave him a solid overview of what I had been up to in terms of treatments over the past year or so. Those who have followed some of my posts will know that I am no novice when it comes to experimental medicine and tinnitus: LLLT, 2 stem cell treatments, skeletal/muscular Procaine-injections, steriods, potassium modulators – not to mention an endless number of doctors' appointments with ENTs, neurologists, dentists, chiroprators, GPs – as well as attempts to participate in clinical trials.

Now, Prof. Jeanmonod is of course a neurosurgeon. But it became clear to me during the morning consultation that he also has some amount of schooling and/or interest in psychology. Therapeutic and diagnostic psychology. During the consultation, I therefore knew I was being "observed" from more than just the neurological point-of-view. I therefore also knew that my unrestrained criticism of TRT and limitless insults of the ENT-community might well backfire with a withheld verdict from professor along the lines: "Mr. Hansen, I think there is a lot of anger inside of you".

A good 2½ hours had passed since my arrival at the clinic, and we broke-up for lunch and the professor suggested we reconvene 2 hours later (by which time the data assessment of my EEG scan would be complete). Some members on this board have questioned the price of the consultation (ie. EUR 2200,-). It is certainly a lot of money, but I should mention that I was also the only patient at the clinic that day – and essentially the professor and his staff had cleared their whole day schedule just for me (similar to what any other patient seeking his help would get).

We got going again at 2:30 in the afternoon. By this time the EEG data had been compiled and I was ready to receive my "verdict". This time it was mainly the professor doing the talking. Now, I am normally quite comfortable relaying medical information in general (even as a non-doctor), but the brain is an exception. And the follow-up consultation most definitely did involve the (human) brain. So forgive me if not everything is 100% correct. The kind of tinnitus that the professor can diagnose (and treat) is a case of tinnitus where a loss of auditory input to the brain has been established resulting in abnormal brain wave activity known as brain wave dysrhythmia (see my EEG results further down). The way this dysfunction arises is something like following: auditory input (from the ear) is passed on to the thalamus. Between the thalamus and the auditory cortex, there is a mapping/exchange of information which can become dysfunctional when a loss of auditory input occurs. The culprit/explanation of this is something known as the "edge-effect".

In my case, abnormal brain wave activity was observed, but not in a statistically significant manner. I am therefore not a candidate for surgery. Professor Jeanmonod then offered me three additional explanations as to why tinnitus might be present in a person – he referred to three topics informally as:

1) ENT-related (ie. tinnitus having an origin within the domain of an ENT – could be cochlea related, pulsatile-related and/or objective tinnitus).
2) Muscular-tension related; a focus area involving the understanding of trigger points – and an area of medicine which is receiving an increased amount of focus.
3) Emotional tinnitus; a type of tinnitus which the brain itself is "responsible for" and without any objectively measurable reasons (ie. audiograms without significant hearing loss and/or normal EEG scans).
The above three etiologies do not have a formal diagnostic method. It is therefore a "best guess" which category the patient belongs to.

At this point we went next door to a very simple examination room for a short series of neurological tests – the kind any neurologist will perform on you (but there were no gait tests involved here). Additionally, I was asked to complete a very symbolic psychological test: it consisted of a white rectangular pad roughly 15 x 25 cm; on it was a yellow circle at the bottom right hand corner (about 7 cm in diameter). I was then asked to place circular magnets on the magnetic pad (in relation to the yellow-filled circle). The pad represented myself and my environment; the yellow circle represented me (as a person), and the coloured magnets represented areas of focus in my life eg. friends, work, tinnitus, and social activities. Apparently, this simple test can reveal a lot about a person. I decided to complete the test in a way that would (hopefully) confuse any psychologist. [What the professor did not know about me is that I have completed a fair bit of psychological assessment myself: I have done no fewer than 200 properly rated IQ tests, roughly 15 analytical/partial IQ tests, 7 different personality profile tests, and 20 hours of psychological assessment.]

Based on the above as well as my own account of my tinnitus history, the professor concluded my tinnitus is probably best explained by an "emotional-origin". From then on, we had a bit of a back-and-forth exchange of ideas. I will list them below – as well as some of my own ideas/theories.

1) The professor's #1 theory/model on tinnitus as being caused by a loss of auditory input to the brain assumes that the person, a) has had a loss of auditory input, and b) has had a stressful event in his or her life later on. A loss of auditory input per se, is not sufficient to create tinnitus in this case. Now the professor – with more than a decade of study – may well be right, but his model almost certainly assumes that the loss of auditory input to the brain is maintained. In my case – due to my experimental treatments – I have managed to restore a fair bit of auditory input, and brain plasticity may be setting in as a consequence. Essentially, I am wondering if – in simplistic terms – I would have tested differently on the EEG scan had I showed up at the clinic before any of my LLLT and stem cell treatments.

2) I should mention that prior to developing tinnitus in April 2013, I had one month before that developed a case of so-called micro eye-floaters. Due to my young-ish age (35 at the time), I knew that the eye floaters were most likely micro-floaters and consequently inoperable (or likely so). I sense within myself that perhaps that episode may have triggered "something" within me (ie. the so-called stressful event that the professor mentions is necessary for tinnitus to occur in the brain). For sure I was annoyed by the floaters themselves (still am) – but also by the fact that I had seen my GP and a number of eye specialists for my constant eye inflammations during the two years prior to the eye floaters occurring (the inflammation being the culprit). I hold them accountable for basically not doing their job ie. not diagnosing me and treating me for the underlying cause of the constant eye inflammations I was having back then. In relation to this, I have provided insights on this board into the use of stem cells and autoimmune diseases [see thread: tinnitus in one ear].

3) There was also a surprise for the day's consultation: it turns out that Prof. Jeanmonod himself has tinnitus. In a previous life, he had played in a band. He did not develop tinnitus from that alone, but from a stressful period later in life. But as he had explained to me earlier: there are two components that must be fulfilled in order to develop tinnitus according to his model: loss of auditory input to the brain and an emotional trigger. He mentioned it had been a problem for him for a couple of months post onset and then he moved on. His own tinnitus was a non-issue for him. Indeed, he seemed completely well functioning and totally unaffected by it.

4) We did discuss the use of psychotherapy in the treatment of tinnitus. He himself is not a big fan of TRT, specifically, but instead prefers more tailored psychotherapy. He specifically said that while conditions such as depression and anxiety can be hard to treat, it is nothing compared to how difficult it is to treat "acceptance". To accept a situation or condition in life – be it a lost limb or tinnitus – is one of the hardest things we humans can be confronted with. We discussed the topic back and forth for some time. I sensed from the discussion that he thinks psychotherapy does have a role to play in the treatment of tinnitus – and to the extent that it matters, I would myself suggest seeking out a therapist with a minimum of a Ph.d level background and specific knowledge of treating tinnitus and acceptance. The professor made it clear to me that the topic of "acceptance" is crucial. Acceptance, he explained, is different to "learn to live with it" – and plays a fundamental role in certain parts of psychotherapy.

5) We also discussed the current on-going clinical trials for various treatments of tinnitus. This was towards the end of the consultation. We instantly agreed with each other how critical the screening process of the candidates is. Unless the candidates are screened and diagnosed with a specific type of tinnitus, the clinical trial sponsors will not know what "category" the participants belong to. Which could well be why drug development has so far been unsuccessful. Compare it with a drug maker developing a new antibiotic and testing it on people who simply "have an infection". Unless it is determined if the infection is viral or bacterial – and if so, which type of bacteria – then proving efficacy of the antibiotic is difficult indeed. And that's the difficulty drug producers of tinnitus treatments are facing (because there is no device which currently can screen people objectively for tinnitus). One of the few individuals who can objectively diagnose people with subjective tinnitus is of course the professor himself. But even he can only do so for a specific type of tinnitus (as already mentioned). My own reflection on this is that Autifony – with their tight limitations on hearing loss – may well be "doing things right". Audiology cannot diagnose tinnitus directly, but by placing strict limits on hearing loss you can at least enhance the chances of getting the right candidates. And in the absence of an all-knowing device which can objectively diagnose all cases of tinnitus, that is perhaps the best thing that can be done at this moment in time.

With the above information, I feel I have captured the essentials and highlights of the full day consultation with Professor Jeanmonod. He is a very nice person – for sure. I am glad I went to see him. For me, speaking with the professor has been the only time during my entire last year of experimental treatments that I felt I spoke with someone who knows enough about tinnitus to have a worthwhile discussion about it. From time-to-time, I believe it can be a good investment to seek out a professor in any field of medicine; there is a significant difference in the level of knowledge between your "average GP" and a professor who specializes in tinnitus surgery.

This post also marks the end of my year-long journey into the world of experimental medicine. At this point in time, I have travelled more than 40,000 kilometers for my various treatments, spent more than 60,000 dollars in non-refundable medical expenses, and shared a good deal of information on the various on-going clinical trials as well as financial data on pharmaceutical companies. I have shared and documented the very best and most unique medical treatments available – the kind of treatments that your average GP or ENT "around the corner" or "down the block" will definitely not know about.

It is difficult to gauge if my journey has ended on a high- or a low-note. From my meeting with the professor, I am left with the reinforced opinion that curing tinnitus can indeed be quite a challenge. The brain is a seriously complicated piece of biological machinery; understanding it is more than difficult enough; curing pathologies within the brain even more so. We are still some way off from really truly understanding what tinnitus is. But I am still relatively (and realistically?) hopeful that the sponsors of the current clinical trials are onto "something". I should also mention that I have myself experienced what I believe are a new series of improvements with my own tinnitus; I am having episodes where my tinnitus almost disappears for an hour or two – and this has never happened before. I want to see where this all leads. I will be doing a bit more research on potassium modulators and dosage levels, and "see what happens". I will do an update at some point in the "Flupirtine thread".

As the day with the professor approached its end, I started gathering my various medical papers that – by this time – were scattered all across the table. And as I did so, Professor Jeanmonod uttered the "magic words" that I will not soon forget: "Mr. Hansen… your knowledge of medicine is impressive indeed".


View attachment 3635


View attachment 3636


View attachment 3637

Were you able to ask Dr. Jeanmonod any of our questions re Retigabine?

 

[attheedgeofscience]

There is one conclusion professor Jeanmonod has that I wonder about. That is the necessity for an "emotional trigger" to co-initiate tinnitus. I think I would not be wrong in also referring to this as the "stress" component that has come up in a lot in causality ponderings. Indeed there seems to be a number of folks on TT reporting that they got their T while in a "stress" situation. (Glutamate sloshing around maybe???). However, I wonder about this for my first, stage 1. tinnitus, that set the floor for the rest of it later. I was age 6 and having a whale of a time. For sure I was not stressed or "emotional" (if exclude having fun!) as we had an incredible, free range, African childhood. The post firecracker ringing stressed me after the fact as I would gripe to my mother about it for some months I believe, before I got over it.
So in this instance I wonder about Jeanmonod's "requirements"...Any comment?

Agreed. Needless to say, there are accounts of people developing tinnitus from acoustic trauma - and these people would develop tinnitus regardless of their emotional state, the position of the stars, or the pH-level of their blood.

I did question his theory indirectly when the professor and I spoke about hearing loss in the modern (noisy) society. He said that if noise exposure alone was the reason behind tinnitus, then we would see many more cases of tinnitus than we do. I mentioned to him my conservations from last summer with Dr. Wilden, the (in)famous cold-laser specialist who informed me that everyday in Germany, there are some 20-30 school age children being fitted with hearing aids (because of noise).

Of course, the professor's theory does not rule out that tinnitus may occur for "other" reasons. What he is saying is that the tinnitus cases he treats is related to the two following components: loss of auditory input to the brain and a stressful period in life. The "and" in the previous sentence is a mathematical AND - meaning both criteria must be true (= "1") in order for the statement to be fulfilled.

He has treated some patients already, so obviously he is not just suggesting some "wild" theory. On the other hand, he really is operating within a niche field of medicine. He is a neurologist/brain expert - and his work is very focused on brain wave abnormalities. Something which I know absolutely nothing about...

Rather sobering conclusions there at the end but can't disagree that the brain is complex as hell. Kind of like the "gut", my other nemesis!

Agreed. As I left the building complex of the clinic, I knew my journey had come to an end. This is it. There is nothing else I can do. I do not have a joker card hidden up my sleeve (and which I can play at any moment should I want to).

The professor - on the other hand - was happy on my behalf; he does not want people to have abnormal brain wave graphs. I told him that I saw things differently, but he confidently assured me that based on all my assessments of the day - ie. psychological and neurological - I was in a good position to take control of my life. Professor Jeanmonod does not want to operate on an otherwise healthy brain. That is his position.

As I walked back to my car, I stopped up along the riverside of the Solothurn river and reflected on the past 1½ years.

Solving medical problems within the field of neurology is notoriously difficult. Medicine - as a field of study - has not seen the same revolution that the field of technology has - examples being the Internet, GPS, and computing power. And it is many years ago that, an event of similar magnitude, the introduction - by pure accident - of penicillin took place. Penicillin was indeed not created. It was discovered. An "accident" you could say. Nothing to be proud of, really.

Having developed tinnitus has changed my outlook on life. Forever. Because of my experimental treatments, I have seen and interacted with other patient groups - some suffering immensely. And incurably. I have developed a disdain towards life. The basic premise of life - Charles Darwin's theory of the survival of the fittest - remains true even in a modern society. It has just taken a hidden form. That's all. Stem cell therapy is almost certainly a bright light shining in the distance. It gives me great pleasure that Man is begining to play "God" and undoing the imperfections of Mother Nature. Great pleasure.

It has also given me great pleasure to have insulted more than a few doctors during the past year due to their pitiful knowledge of medicine in general - and tinnitus, in particular. Doctors so proud of themselves and wearing their "fancy" white lab coats. The reality is they can't really "fix" anything more complicated than an ingrown toe-nail.

I have an "all or nothing" personality - something I am well aware of. All things considered, I am glad I never had children, and I am glad I never will. The continuation of life - with all the imperfections of biology and medicine - is a crime, in my opinion. If things improve, I will gladly reconsider.

attheedgeofscience
Pioneer in Experimental Medicine

 

[dan]

 

[Valentin]

View attachment 3637

does this scan show only one of your auditory cortex hyperactive? if so do you hear tinnitus in one or both ears?

 

[dan]

@Valentin , ATEOS's brain scan does not show brain hyperactivity in the auditory cortex, but probably in the paralimbic area.
If you want to see what auditory cortex hyperactivity is, I can post mine. Also above you can see I posted my brain wave graph, which shows a classical thalamocortical dysrhythmia pattern - elevated brain wave activity across the whole frequency spectrum.
Thanks

 

[Viking]

Dear @attheedgeofscience , I would first like to thank you for your testimony, I will have to wait another two months. I know that you are much more informed than me, but looking at the pictures I've come up with the "old" tDCS stimulation. Have you ever considered putting an electrode (Anodal) on the front portion? I'm just "thinking out loud", but there may be a chance that you manage to reverse the hyperactivity in that precise spot. tDCS downregulate the process of hyperactivity.
best wishes

Ivan

 

[Valentin]

@Valentin , ATEOS's brain scan does not show brain hyperactivity in the auditory cortex, but probably in the paralimbic area.
If you want to see what auditory cortex hyperactivity is, I can post mine. Also above you can see I posted my brain wave graph, which shows a classical thalamocortical dysrhythmia pattern - elevated brain wave activity across the whole frequency spectrum.
Thanks

yes please, i'm just curious to see another exemple, the only one i saw was from daedalus on this forum.

 

[Dr. Nagler]

As mentioned in an earlier post, I had an appointment yesterday ...

@attheedgeofscience -

I am truly sorry to see that you have not yet found the silence you seek. You and I agree about very little, but I have always admired your tenacity. So perhaps the disappointment of today will lead to the victory of tomorrow. I hope so.

Dr. Stephen Nagler

 

[attheedgeofscience]

does this scan show only one of your auditory cortex hyperactive? if so do you hear tinnitus in one or both ears?

From the doctor's report which I received yesterday:

Quantitative EEG examination:

Shows no significant thalamocortical dysrhythmia, only a trend could be found for an increased activity at a P of 0.3 in the lateral orbito-frontal right-sided area.

[The above part of the brain is part of the paralimbic/associative system - so that's where I have some amount of hyperactivity; the doctor does not believe that this kind of hyperactivity can be corrected with drugs; personally, I don't even know if this kind of hyperactivity would result in tinnitus, I must admit...]

 

[awbw8]

@attheedgeofscience

I was moved reading your report. I admire the role you've taken up as the intrepid medical explorer during the past year and a half. While we went about our tinnitus journeys in very different ways, I know that feeling when we see that the journey has "ended."

If you're having moments of near silence, I humbly think better days will come, maybe all of this work you've done will settle in and help you heal eventually. I'm glad your final day was one with an intelligent, educated and kind medical professional with whom you could have a equal back and forth. It sounds like that in itself is a good ending, all things considered. It makes me happy to know there are people like that out there, I agree with just about all of what you reported the Dr. said. I only wish he were a bit closer.

I've always had a lot of respect for your journey, even if our modes of expression are different. I know the few very brief posts we've shared directly here have not been 100% amicable, but I am sorry for letting my emotions get in the way - I would have said that in a PM much sooner, but I believe you have them disabled.

Good luck with everything ATEOS and thank you for sharing your journey here.

 

[RCP1]

Hello,

There's is a clinic in Argentina which uses 3D scanning of the brain to categorise and then treat tinnitus symptoms using already established medicine.

Looking for feedback on the potential of this approach.

I have an idea as to what the feedback will be but I thought I'd throw it out there to see what board members think.

http://www.vertigo-dizziness.com/english/tinnitus/is-it-possible-a-recovery-from-tinnitus.html

Cheers

Robert

 

[generalfuzz]

@attheedgeofscience Thank you for sharing your thoughts, insights, and learning along your journey. It is very much appreciated.

 

[attheedgeofscience]

Hello,

There's is a clinic in Argentina which uses 3D scanning of the brain to categorise and then treat tinnitus symptoms using already established medicine.

Looking for feedback on the potential of this approach.

I have an idea as to what the feedback will be but I thought I'd throw it out there to see what board members think.

http://www.vertigo-dizziness.com/english/tinnitus/is-it-possible-a-recovery-from-tinnitus.html

Cheers

Robert

There are drugs currently available on the market which can be used to treat/improve certain types of tinnitus, off-label. But it requires a proper diagnosis in order to know which type of drug to use. None of these of drugs were designed specifically as a treatment against tinnitus. The success rate is probably not that high. For instance, Professor Jeanmonod does not believe that there is any type of drug out there which might help me. And I am not a candidate for surgery either.

The brai2n clinic is another option for a diagnosis, but I believe Dr. Dirk De Ridder has left, and their website is apparently only available in Dutch. I don't know what they are up to these day.

http://www.brai2n.com/nl/patient/nieuws-patienten

There are drugs being developed against tinnitus specifically, but these are all in clinical trial - as most people on this site probably know.

 

[RCP1]

Thanks for the response. Can I just ask why you would not be a candidate for drug treatment? Is this because the Auditory Cortex is not hyperactive?

I see you have spent a considerable amount of time and money looking for a solution. Do you have any other ideas as to what may work for you?

Surely there must be something which can help.

You have my complete respect for the way you have fought for yourself and your quality of life.

Could I ask one last question.

Do you have any regard for body based therapies and bringing down the overall stress of your central nervous system and approaching it this way?

I have to admit after 2 months of research myself I am very confused as to how to approach a therapy. All roads seem to end the same.

I hope your Tinnitus clears up itself and that the act of ceasing to look for a solution paradoxically brings you some peace.

Cheers

R

 

[attheedgeofscience]

Thanks for the response. Can I just ask why you would not be a candidate for drug treatment? Is this because the Auditory Cortex is not hyperactive?

Yes, my brain wave analysis combined with the neurological assessment of me steered the doctor in a direction of me being a non-candidate for a drug related treatment protocol.

His neurological assessment included the Weber-Rinne tuning fork tests, as well as a simulated audiology hearing exam, and based on that, he concluded that my hearing is very good indeed. Which of course it is - at least in the speech frequency range. After my experimental treatments, I now have the hearing of a teenager (despite being 37 years old). I think that may have influenced his assessment. Doctors - like all human beings - are prone to unintended psychological bias.

I will be doing a bit more human guinea pig testing (using myself) with Flupirtine (going up to 700mg tomorrow). The CNS medication seems to have an effect on my right side tinnitus. See thread on Flupirtine.

I see you have spent a considerable amount of time and money looking for a solution. Do you have any other ideas as to what may work for you?

No. Not really. Possibly a new course of LLLT. But I don't have any concrete ideas. Perhaps the AUT00063 phase IIb trial will have a wider "net" with regards to their inclusion/exclusion criteria?

It is still undisclosed what AM102 is. I am curious as to whether it is a drug (in pill form) or a medical procedure (as with AM101). But whatever it is, it will be a long time until it is available in a phase II trial.

Surely there must be something which can help.

Not necessarily, I am afraid.

Medicine as a field of study has a poor track record in terms of new developments: President Nixon declared war on cancer in 1971 (that's many, many years ago) - and look where we are today; In 1984, the AIDS virus was discovered and, so far, only 3 people have been completed cured using highly experimental (and dangerous) methods; Multiple Sclerosis also remains incurable and the drugs used in conventional treatments of the disease (eg. steroids) have plenty of side effects. Stem cells are, however, a potential beneficial alternative to conventional treatments for MS (but so far only available to those who pay for their own treatment abroad - typically about USD 25000,-).

Not exactly sunshine days for medicine.

Do you have any regard for body based therapies and bringing down the overall stress of your central nervous system and approaching it this way?

Yoga and meditation may/may not be helpful. Running?

Those who read my posts will know that I am very "anti-therapy" when it comes to tinnitus. The reason is that tinnitus is the cause of people's anxiety - and trying to fix the symptoms without fixing the cause is futile. It's like those people who continue to take painkillers for their back-pain without going to the chiropractor. In my opinion.

There is one psychologist on this board who has shared a few relevant insights:

https://www.tinnitustalk.com/thread...rse-university-of-iowa.4925/page-2#post-52866

The above topic probably falls within the scope of the neuropsychological domain, and her assessment is worth taking note of. And it is not often I say that about psychologists in relation to tinnitus.

 

[attheedgeofscience]

As a piece of general information which I have been inquired about: Prof. Jeanmonod speaks fluent English, German, and French.

Most of his patients come to see him regarding tremors and/or neurogenic pain; not tinnitus.

It is possible to contact him via phone/e-mail for an initial assessement. The initial assessment costs nothing.

His surgery is non-invasive (no drilling through the skull bone).

It is a pleasure to be in his care.

 

[dan]

@attheedgeofscience
If you compare my qEEG with yours you can clearly see that you do not fall in the thalamocortical dysrhythmia category which Dr.Jeanmonod treats.
So it would be unethical for him to operate on your TCD free brain.
The qEEG is the main decisive tool, not the tuning fork.

 

[dan]

His surgery is non-invasive (no drilling through the skull bone).

Only a 5 hour MRI at 120dB....

 

[attheedgeofscience]

I haven't results because (previous explained) my appointment is on 15/02/2015. Next year!

If you are arriving by car, then please be aware that your GPS may have trouble locating the correct address of the clinic (at least I had - and my GPS is totally up-to-date). The clinic is actually located on a small villa road (which can be easy to miss if driving a car). I ended up driving around for 20 minutes before finally finding it (there is a problem with a double naming of the main street right at that GPS point).

Below is a map of the local area: the green circle is where you are meant to go and the red circle is where my GPS kept taking me to.

Have a good journey.

 

[dan]

There is a sign "Obach Privatklinik" - you can't miss it, but I was walking....

p.s. if your EEG is worse than mine, I really feel sorry for you!

 

[Viking]

Dear @attheedgeofscience i can't start a conversation with you due to privacy settings: I need some advice. Where did you stay / sleep when you went in Solothurn? On February 9, I'll be there but I can not find a hotel near the clinic. Dr. Jeanmonod tell me (on phone) that i must stay in Solothurn for 2 night before flight back to Italy. If you were tested positive for TCD, how much time would be spent before the surgery?
Thank you and happy new year
Ivan

 

[attheedgeofscience]

Where did you stay / sleep when you went in Solothurn?

I stayed at Ramada:

http://www.h-hotels.com/hotels/rama...uh5xnKuV4OI0XJCZqbsogc2K1KdNdscj1EaAhIr8P8HAQ

Ramada is about a one kilometer walk away from the clinic (but I was admittedly in a car, but wanted to leave it at the hotel...).

The following hotel should definitely be very close (ie. 400 meters away, or so):

http://www.hotelaare.ch/de/

As you can see from the tower at the right hand side of the photograph below...

...it is the same tower from the photograph I posted in my conclusion to my journey:

https://www.tinnitustalk.com/thread...used-ultrasound-surgery.276/page-8#post-75213

Dr. Jeanmonod tell me (on phone) that i must stay in Solothurn for 2 night before flight back to Italy. If you were tested positive for TCD, how much time would be spent before the surgery?

Here is the summary of events of my "interaction" with Prof. Jeanmonod:

1) In March, 2014, I sent him my audiogram details and my own request for an evaluation at his clinic.
2) Some three weeks later, I had a follow-up phone call with him which lasted 20 minutes, or so. During this phone call, he mentioned that the waiting list for a high resolution qEEG scan would be about six months, and that if I were to be found a candidate for treatment, there would be another 3-6 months waiting list.
3) In April, I received my clinic invitation (which I shared on this board).
4) In October, I paid my consultation cost (CHF 2,200,-)
5) 5th November, I travelled by car from Germany to Solothurn (about 800 km).
6) 6th November, I had my full day appointment with Prof. Jeanmonod.

I was therefore never told about having to stay an additional 2 days in Solothurn (prior or after my appointment) as the consultation and surgery would be two disjointed events (in time).

For this reason, I am also slightly surprised about the difference in "treatment" that he is suggesting to you (ie. treating you "on the spot", so to speak). I know nothing about neurosurgery, and so all I can confirm is what I know from the professor himself, and that is that patients need to stay for observation for 24 hours at his clinic (if they undergo surgery). And as far as I know there is no general anesthesia involved in the procedure (the brain cannot feel pain). But I believe there is some local anesthesia involved with the fixation of the device that keeps your head locked 100% in place during surgery (but I am not 100% sure). I believe there is also some amount of real time MRI scanning taking place during surgery and so you should consider investing in top quality earplugs (I believe you can "special" industrial ones which are rated 39 db NRR; normally 33 db NRR is the limit). However, I can only assume that the staff of the clinic already take all necessary steps (one way or another) to ensure the safety of the patient in relation to noise exposure.

Take care,
Jakob

 

[Viking]

I stayed at Ramada:

http://www.h-hotels.com/hotels/rama...uh5xnKuV4OI0XJCZqbsogc2K1KdNdscj1EaAhIr8P8HAQ

Ramada is about a one kilometer walk away from the clinic (but I was admittedly in a car, but wanted to leave it at the hotel...).

The following hotel should definitely be very close (ie. 400 meters away, or so):

http://www.hotelaare.ch/de/

As you can see from the tower at the right hand side of the photograph below...

View attachment 4241

...it is the same tower from the photograph I posted in my conclusion to my journey:

https://www.tinnitustalk.com/thread...used-ultrasound-surgery.276/page-8#post-75213




Here is the summary of events of my "interaction" with Prof. Jeanmonod:

1) In March, 2014, I sent him my audiogram details and my own request for an evaluation at his clinic.
2) Some three weeks later, I had a follow-up phone call with him which lasted 20 minutes, or so. During this phone call, he mentioned that the waiting list for a high resolution qEEG would be about six months, and that if I were to be found a candidate for treatment, there would be another 3-6 months waiting list.
3) In April, I received my clinic invitation (which I shared on this board).
4) In October, I paid my consultation cost (CHF 2,200,-)
5) 5th November, I travelled by car from Germany to Solothurn (about 800 km).
6) 6th November, I had my full day appointment with Prof. Jeanmonod.

I was therefore never told about having to stay an additional 2 days in Solothurn (prior or after my appointment) as the consultation and surgery would be two disjointed events (in time).

For this reason, I am also slightly surprised about the difference in "treatment" that he is suggesting to you (ie. treating you "on the spot", so to speak). I know nothing about neurosurgery, and so all I can confirm is what I know from the professor himself, and that is that patients need to stay for observation for 24 hours at his clinic (if they undergo surgery). And as far as I know there is no general anesthesia involved in the procedure (the brain cannot feel pain). But I believe there is some local anesthesia involved with the fixation of the device that keeps your head locked 100% in place during surgery (but I am not 100% sure). I believe there is also some amount of real time MRI scanning taking place during surgery and so you should consider investing in top quality earplugs (I believe you can "special" industrial ones which are rated 39 db NRR; normally 33 db NRR is the limit). However, I can only assume that the staff of the clinic already take all necessary steps (one way or another) to ensure the safety of the patient in relation to noise exposure.

Take care,
Jakob

Thanks you so much for your advice.
Your interest is always commendable
Best Wishes
Ivan

 

[Viking]

I add: I also do not know why Jeanmonod suggested to stay for 2 days. My current clinical situation is this:
Bilateral simmetric neurosensorial hearing loss high frequency Over 40db
Tinnitus bilateral fluctuating high frequency, worsened dramatically after continued use of hearing aids and masking. Further deterioration with use of antidepressant medications.
Sudden abnormal nocturnal awakening with tinnitus especially on the left side (where it was performed microvascular decompression surgery)
"Electric shock" from the top of the head to the legs ... this happens when I'm relaxed. (very strange). This condition is improving with Keppra.
Stability problems. No dizziness.
Nausea. (I think it is a problem related to the nervous condition overall. then anxiety)
sudden Myoclonus and dyskinesia. Confusion. (improving with keppra)
Sporadic facial spasm on the right side.
Problems playing with videogames, not before. motion distress.
Hyperacusis (currently very subsided with the use of the drug Keppra ... clinical data is not yet confirmable)
Maybe he has other ideas / investigations to consider? who knows ...
I will email Franziska Rossi about my medication with Keppra, to know if it may interfere with clinical investigation (qEEG)
Let's hope so
Thanks again for your contribution