HIFU (High-Intensity Focused Ultrasound) Surgery

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

 

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?

 

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...

 

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.

 

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

 

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.

 

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

 

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...

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

 

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

 

@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

 

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

 

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

 

@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

 

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...]

 

@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.

 

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

 

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

 

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.

 

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

 

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.

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.

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.

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.

 

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.

 

@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.

 

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

 

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.

 

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!

 

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

 

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

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

 

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

 

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