HIFU (High-Intensity Focused Ultrasound) Surgery

Emergency/WARNING: the website of Dr.Jeanmonod has been deleted. www.sonimodul.ch is not available. Phone contact are lost. They don't answer my email by 15 december 2014. I am conducting a survey of Swiss Industrial recorded ... it turns out to be a "chiropractor"?!?! HELP! in the next few days I have to pay 2200chf and I do not know if I will find someone in Switzerland!

 

I can confirm that Prof. Jeanmonod is most definitely not a chiropractor. Here are a couple of photos I took while I was waiting for my brain scan images to be compiled:





Prof. Jeanmonod has received many awards during his long career in neuroscience...

I agree that this is, if not worrisome, then at least bizarre. I don't know what to say, really. I would wait a few more days, and then decide on what to do, if I were you. His office is located on the ground floor of a building housing various medical providers:



I would suggest that you try to find out via one of those "what is going on" if you do not receive any response from the team of professor Jeanmonod. I would be very surprised if there is something "fishy" going on at a Swiss clinic. Switzerland has very high standards. I have lived there for eight years.

But I admit, it seems "strange". Please let us know what you discover.

Thank you.

 

Perhaps they are simply on holiday during the entire week. That's my guess.

I would wait until Monday, and then make a decision. They should be back from any holiday by Monday, I would assume.

My suggestion.

P.S. I should mention that I also had an experience of the assistant to Prof. Jeanmonod not responding to my enquiry. I then called the clinic 3 times during one afternoon and there was no response. Turns out it was her day off (Wednesdays). I then followed up with an e-mail and she apologized for not getting back in touch with me (it was regarding confirmation of the payment transfer).

 

Dear @attheedgeofscience ;
thank you for your quickly reply.I need answers because otherwise I will not pay anything, and not only that, thay have all my clinical data. The fact that website is not under "work in progress" but on my monitor appear: This site is suspended
The information was sent to an administrator...

The same is for the phone contact!

I hope that this is a connection error ....very long Christmas holidays .... I do not know...

 

I understand your concern. But right now it is just an irregularity. Let's not jump to conclusions.

Call him Monday when they should be back from holidays.

I believe you have to pay the sum 3 weeks in advance. That means you still have another week or so before you need to make the transfer (is your appointment not on the 5th of February?). I therefore do not really see a problem (yet).

Take care. I am sure it will resolve itself.

 

I am very grateful to you!
thanks again!

 

The sum 3 weeks in advance? That's a new one... The sum of what? Why in advance? What sort of transaction is that? What is it they provide that they want our money IN ADVANCE 3 weeks before? Perhaps they are afraid we will not pay them as they don't really provide anything?
@attheedgeofscience what is you really got for your money? Good counseling?
Now I may be wrong, I don't know how these companies work abroad, but it DOES make me skeptical...

The web site think is something TROUBLESOME to say the least. Ivan hold your money my friend, I smell a rat. We want to be cured, not become victims!

Being a pioneer in some new effort to cure your tinnitus is something hopeful indeed, a dream of yours and ours. But the facts remain: nobody tried it, and one person we know of did come with empty hands... I'd be (as I am) EXTREMELY skeptical about them. Of course, they may reappear, they want your money after all, but are they legitimately administered by any means in their country?

 

No it isn't:

https://www.tinnitustalk.com/thread...used-ultrasound-surgery.276/page-7#post-73183

This is what I got:

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

It is a full day consultation that takes place at Prof. Jeanmonod's practice. If there is a no-show by his patients, he loses a full day's work that he cannot recover from (because many of his patients are long-distance and cannot just show up at a moment's notice if he were to call them in place of a "no-show"). And he also employs two other people who take part in the full day consultation and EEG scan analysis. That's why he charges up-front so as to not carry the financial risk. And given the amount of fools that inhabit the surface of this planet, I would probably do the same if I were prof. Jeanmonod.

I understand why @Viking is concerned, but personally I would have waited until Monday before posting such a post in public (as he did). I don't think it helps to create confusion about an otherwise distinguished professor.

The professor has operated his current clinic for several years already, so why would he suddenly "disappear" after +30 years as a doctor?

It's called a financial transaction. I tried to transfer him "bananas" but he only accepted "euros" or "swissfrancs". That's the way it goes.

 

Quiet! I asked for help because many members, who know this therapeutic alternative, are not contactable in private. So I asked him in public. Keep calm. I estimate @attheedgeofscience. and I ask pardon publicly, but I did not want to "involve" in anything. @skoupidis we try to keep calm. I was wrong. Now that I knew. I beg your pardon.

right right?

 

You did nothing wrong, my friend. As I wrote, I fully understand your concern.

Take care.

 

@Viking please calm down. This doctor is legitimate, I know this for fact.
It might be the website is down for upgrading. It was a new version so it may have glitches. I have been to the clinic in Nov.2013 so if you have questions I can suggest some things like cheaper accomodation- I spent $40 per night in nice traveller motel type, only 10 minute walk from the clinic (not across the river)...

 

ok better not write anything more on these forums. I've had tinnitus for 9 years (today is the anniversary 03/01/2006) and I've never written anything. For once I have asked for help / clarification, and I have ask pardon to everyone.....bah good luck all

 

No need to ask for a "pardon". As I wrote, I fully understand your concern about the issue. Travelling to a foreign country with plenty of expenses (eg. flight, hotel, and medical costs) is not easy at all.

My main problem with Internet forums is related to certain specific people who feel a need to join in the "conversation" without having a clue what they are talking about (no names mentioned, but there have already been a couple of other posts today in unrelated threads).

Indeed, it is a multitude of circumstances that led to your earlier conclusion:

• No website available
• No phone connection
• No e-mail response

Who wouldn't become worried in those circumstances? And based on my knowledge from earlier today, I can say with a high degree of probability that the "suspended website" is probably due to a lack of payment. And if so, then the professor is himself to blame for all of this. At least in some small way...

Take care.


P.S. For the record, I am posting a screenshot of the website (www.sonimodul.ch):

 

@Viking I just dialed their number and I heard the secretary's voice (Ms.Rossi) greeted me officially "Goodmorning, Sonimodul".....I hanged up then. The phone number is +41 32 621 79 31

 

@Viking there is no need to apologize to anyone. I am with you 100%.

@attheedgeofscience your word is good for me. I have already read your postings, I would put my trust in you because you back up your sayings well. I also hope they are a legitimate and serious organization that respects their patients above everything else. Acording to you, they are. Duly noted. I wouldn't have a reason to doubt you. But I do have good reason to doubt their methods until they give result as far as tinnitus is concerned... After all, as you say, you only got counseling in the end. This is the final result. I wouldn't need to pay that much for that and I am sure Ivan will not settle for that.

In the end, jugging that for a reason "you are not suitable for surgery" may be a good way to charge 2200€ for a couple of exams that you possibly have already done! But that is just my opinion.

Furthermore, you cannot predict a bad behavior or even bankruptcy even if you had good past with them. As you very correctly suggest, Ivan should wait until Monday or more. Personally, I would do some more digging before paying them. The customer also has to have reassurances, what you call a day's work lost for the doc may be a 2 or 3 months salary lost for the patient. Not to mention the trip, the extra expenses, the absence from his job etc. And ultimately, the feeling that all of that was regrettably for nothing.

I hope I made my point clear, I wish my friend will indeed find a cure and as soon as possible! And if they are indeed some tinnitus pioneers, then, may Ivan be the first to have relief!
But it is a case to be skeptical. It just seems too hard to believe, that is all.

PS: Our dear doctors opinion may be helpful here. Unless of course there is nothing to say... We also do not need negativity but an open minded approach. But what we always need is objectivity

 

@skoupidis please do proper conversion.
2200CHF = 1830 Euro (not 2500 Euro)
Also their site is down, why the big panic? Their phoneline is open!
You are paying for a scan which is not commercially available anywhere in the world. You are paying to speak to the guy who is the colleague of the professor Dr.Llinas who pioneered the latest theory behind tinnitus - who is currently Head of Neuroscience Dept. at NYU.

 

Ok, my bad, no problem, I thought it was euros. But MY conversion adds up to more that 2200 EUROS if we also count the tickets, the hotel, the food ect. I try to see the hole picture here.

Ok all that being true, the question remains: What exactly do you get in return? Sorry folks, it is just hard to believe that the therapy is there in the dark, awaiting for the first person to cure! I wish it proves me wrong. But until I am proven wrong, my reasoning stands.

 

lol, well I apologize for the professor that he did not take into account that some people live in Australia.
You are paying for the scan, full body reflex test and diagnosis of your condition. Then if your diagnosis is within the scope of the treatment, a surgery will be scheduled for you.
Yes it is on the expensive end, but its not like you have a choice to do the procedure elsewhere.

 

What do you get in return when you get an MRI scan which comes back clean?

Prof. Jeanmonod is a neurosurgeon who operates within a very specific niche of medicine (non-invasive brain surgery). A niche of medicine so specialized that he is the only person in the world who does what he does. His primary field of interest is not tinnitus, specifically, but certain types of brain disorders (tremors, neuropathic pain, epilepsy, etc.) that all stem from the same underlying problem: disfunction of brainwaves. It just so happens that a certain type of tinnitus is also associated with this disorder (ie. brain(wave) dysrythmia).

He has already treated patients (with this specific type of tinnitus).

There will not be such a thing as "a therapy" or "a cure" as you suggest (at least not in the near future). If you replace your words with the plural form, then it will start to make sense (eg. "therapies", "cures"). Tinnitus is a heterogeneous condition. Some will get a significant response from future pharmacological treatments; others not so much - if at all. Same story with IT injections.

I take comfort in knowing that your reasoning powers will ultimately guide us towards a cure - especially considering your well informed opinion on neuroscience, prof. Jeanmonod, and your - no doubt - long background in medicine.

 

The treatments I have documented with this board do not exist in the medical textbooks. You can head off to the best ENT in your country and I guarantee you that he/she will not have heard of professor Jeanmonod or... stem cells or... LLLT or... Trobalt, or...

So no, our dear doctors opinion would not be particularly helpful. Don't expect your local doc to know what is happening at-the-edge-of-science. Docs are more comfortable handing out a prescription of antibiotics or writing you a referral for removal of your ingrown toenail.

 

If you are referring to me, I do not have an opinion on Dr. Jeanmonod's approach.

I do have two observations, however.

The first is that healthcare decisions are very personal matters, and while it is fine to talk in generalities, the standards that one applies in determining whether or not any treatment protocol is worthy of consideration can be highly variable. There is no such thing as "one size fits all" in tinnitus. What might be right for Sam might not be right for Bill under the exact same circumstances.

And the other is Stringplayer's Second Law: The degree to which a tinnitus sufferer will apply the laws of logic and common sense in search of relief is inversely proportional to the square of that person's misery and desperation.

Don't expect anybody to know what's happening at the edge of science. On this board it is sometimes portrayed as reality, but that does not make it reality. What we have on this board is a bunch of folks giving it their best shot - that is the reality.

Dr. Stephen Nagler

 

Last message, then I take off the trouble:
1) I never delegitimized anyone (please show me where I would write this).
2) I have never said that he is a scam, but rather that i was in a situation of communication difficulties.
3) @dan you are very kind ... if I had known that you were already been there, I would have asked for information in private. many people, have restrictions on privacy, so I can not contact them. I'm calm, I have not offended anyone, least DELEGITIMIZED!!! That said, I offer you my most cordial greetings and proceed alone as I always have. Here we use tones very arrogant (and useless) that do not believe I deserve. I try to offer my research and my sufferings in the hope that they can be of help to someone else who is not able to do much research. Only this. I never, ever, delegitimized dr Jeanmonod.

Best wishes

 

Agreed. But at least I have sought out the very best doctors on the surface of the planet within their various fields:

1) Acquaklinik (ENT surgeons, headed by prof. Strauss), Germany
2) University Hospital of Leipzig (ENT dept), Germany
3) Doctor Müller (chiropractor and specialist doctor in physical rehabilitation medicine), Germany
4) Dr. Wilden (doctor & inner ear specialist), Germany
5) Stemcells21 (experts in rejuvenation medicine using stem cells and laser therapy), Thailand
6) Zhuhai Luda Hospital (traditional stem cell therapy/surgery), China
7) Professor Jeanmonod (neurosurgeon), Switzerland
8) A number of other doctors such as general practitioners for various "bits and pieces", Switzerland/Germany/Denmark

Besides that I have been in sporadic contact with various top-level researchers and CEOs of otology pharmas. I have travelled +40,000 kilometers for those combined visits. I have spent roughly 60,000 dollars on medical expenses (99% of it, non-refundable). Add to that some 10,000 dollars in travel costs... All of the treatments have been self-chosen and self-devised ie. I essentially had to become "my own doctor" because none of those treatments are listed in the standard medical textbooks. Going for a stem cell treatment for a non-listed medical condition at a reputable clinic is... well... ahem.. not exactly easy (which is probably why I am amongst the first handful of people in the world to ever do it). The amount of piece-by-piece investigative work I have had to do in order to facilitate those treatments would make most peoples' heads spin...

And perhaps most importantly, I have documented every single piece of that entire story with the staff of TT (Markku). So at least "my story" is not just another "Internet story".

I should also mention that I would never have answered the question the way I did if the TT-member had quoted you directly - and indeed it was worded in the plural from ie. "doctors' opinion". I have only the greatest appreciation for the work of surgeons, ER staff, and the combat medics on the frontlines of war. All of it is tough, difficult, and dangerous work which requires making decisions on the fly and with limited information. The rest of the medical community I am less enthusiastic about. And let's face it: none of them are experts in tinnitus, either way. Far from.

Lastly, in relation to the researchers we are corresponding with on the Trobalt trial, here is what the doctor wrote in his last message to us (after I had sent him a two page summary of suggestions):

While the above is not a guarantee for a future study of Trobalt, I trust you will agree that the statement proves that some us know what we are talking about (despite no medical background) given that the statement was made by a physician holding the rank of associate professor (and someone who is directly involved in tinnitus research).

And at least some of us are trying to push the boundaries of what's possible and going about it in a scientific way (eg. documeting the potential efficacy of Trobalt instead of contributing with endless posts in the now +100 page thread on the same topic).

attheedgeofscience
03/JAN/2015.

 

@attheedgeofscience posted [in part]:

Agreed. But at least I have sought out the very best doctors on the surface of the planet within their various fields:

1) Acquaklinik (ENT surgeons, headed by prof. Strauss), Germany
2) University Hospital of Leipzig (ENT dept), Germany
3) Doctor Müller (chiropractor and specialist doctor in physical rehabilitation medicine), Germany
4) Dr. Wilden (doctor & inner ear specialist), Germany
5) Stemcells21 (experts in rejuvenation medicine using stem cells and laser therapy), Thailand
6) Zhuhai Luda Hospital (traditional stem cell therapy/surgery), China
7) Professor Jeammonod (neurosurgeon), Switzerland
8) A number of other doctors such as general practitioners for various "bits and pieces", Switzerland/Germany/Denmark

Besides that I have been in sporadic contact with various top-level researchers and CEOs of otology pharmas ...

...............

Right. And I sincerely applaud you for it. Really I do; what you have accomplished on your tinnitus odyssey is truly extraordinary.

But to the best of my knowledge, not one of those individuals you listed has booked a flight to Stockholm to pick up his or her Nobel Prize for curing tinnitus. And (again, to the best of my knowledge) your own tinnitus is not appreciably different than when you embarked on your odyssey. I know mine isn't.

ATEOS, I cannot overemphasize how grateful I am to you (and those like you) whose dedication and attention to detail will hopefully one day bear fruit in terms of the ultimate evolution of a cure for tinnitus. Although my approach is different, that does not in any way lessen my admiration and respect.

Dr. Stephen Nagler

 

Tinnitus sufferers just need to know there is valid research addressing our condition. Not voodoo treatments.

 

I could not agree more.

Here is the December 2014 issue of the Tinnitus Research Initiative Newsletter ...

http://www.tinnitusresearch.org/en/news/pdfs/TRI_Newsletter_2914.pdf

And I absolutely hate voodoo treatments. I sure tried enough of them along my own tinnitus odyssey.

Dr. Stephen Nagler

 

Not sure this is correct @Dr. Nagler.

Obviously @attheedgeofscience must reply for himself and his own findings, but as far as I know he experiences a fifty per cent reduction (more or less? is that correct? or greater reductrion?) in his T volume / annoyance than when he started out on his voyage around medical clinics.
However I could be wrong and please can @attheedgeofscience reply to this more accurately. It is just that he replied to me once and told me that he had reductions in his T since stem cell treatment (and also some LLLT reduced it a bit too I think).

 

If that is the case, then I absolutely stand corrected. And I would be very interested in knowing to what he attributes this improvement.

Dr. Stephen Nagler

 

I agree. However, I had to make do with what was available to me (as I could not participate in AM-101 nor AUT-63, for instance). None of the therapies I underwent were specifically designed to combat tinnitus - so it was a "shot in dark", I guess you could say.

And knowing what I (and probably many others) have always felt inside of me is also reconfirmed by the premise of the on-going TINNET initiative (which was launched earlier this year). Part of their task is to study and document the heterogeneity of tinnitus. It is assesed that part of challenge with really tackling tinnitus has to do with:

• the various underlying etiologies that can cause tinnitus
• diagnosing tinnitus objectively (in order to know the cause - and hence the right treatment (assuming one is available in a future scenario)).

It is precisely the heterogeneous nature of tinnitus that is likely to cause a variation in the success rate of treatments. The TINNET initiative is not a small one. It is EU-wide, and you will perhaps appreciate(?) that for instance, people like prof. Deborah Hall is part of the team (and actually chair of one of the workgroups). [Prof. Hall is lead academic collaborator for AUT-63 for those who don't know...].

So like my own piece-by-piece investigative work, I can only imagine that the future will likewise be piece-by-piece in terms of assembling knowledge and understanding the efficacy of the various treatments as they become available. The old school mentality of "either it works or not" is precisely why progress has been so slow, if you ask me. I truly believe that tinnitus needs to be understood and tackled differently. And I am glad to see these delicate nuances appear in the medical landscape.

As for TinnitusTalk, it has - over the past year - undergone a huge transformation in terms of the quality of knowledge shared, information on the on-going clinical trials, along with the quality of input from a certain number of members. The total number of members (both active and passive) has also grown. And so has a number of important external contacts.

While "the cure" is not yet ready in tomorrow's mail, I somehow feel that a lot of progress has been made. I also sense - at least from some people - a shift in the willingness to do something about the "tinnitus problem". I once had a manager who - every now and then - would remind the team I was then indirectly a member of: "Are you part of the problem, or part of the solution?"

Personally, I prefer to play on the winning team.

 

So do I.

Do you not believe that we can both be on winning teams?

The battle I am engaged in is the search for meaningful relief today while waiting for the cure of tomorrow.

The battle you are engaged in is the search for that cure of tomorrow.

I think both battles are worth fighting. And I can tell you that I unconditionally support you in your efforts to win your battle.

Dr. Stephen Nagler