HIFU (High-Intensity Focused Ultrasound) Surgery

You had HIFU treatement in switzerland 2 times? ... and did it help?

 

0 results... after a lot of promises. I'm still waiting to see improvements . The first session was conducted in January 2014. No result. The second in March 2015. Results transient but vanished within 15/20 days (placebo effect). Total thermal ablation 4mm on both sides. 2mm at time both sides. They could not appeal to the psychological factors because through 4 exams qEEG ( performed at 3 and 12 months ) the cortical hyperactivity were always located at the center of the brain and along the auditory cortices . The prefrontal cortex is not involved . I would like to show my graphics but I prefer to keep them confidential until the conclusion of the legal dispute. I will have another qEEG in semptember... but this time a lawyer and a member of FUS foundation will be present to the discussion.
Finger crossed! Anyone on it with positive results?

 

I was one of the few wanting to try it but I`m trying other means first ... I would have spent everything I have if i would do it .. .you sound a bit like - and forgive me if i`m wrong - you have enough money for it ... no desperation in your writing. So sad to hear even this doesn`t work!!

So did anyone benefit from it at all? please share whatever you know and care to share ... thanks.

 

yeh i have money and then? what does it mean? who wants to try healing must have the money in this world do not know? This does not mean that waste behind false promises made by idiots!
Unfortunately the misfortunes market is always open and never close. This "surgery" is the last I'll try. I will wait for Autifony. I trust the England project. Sooner or later there will be something that will improve our condition .... damn.. we are in 2015!!!

 

it was just a correct observation, nothing else ... very few people can spend money on this treatment, thats all.

so can you please answer the important part of my post .. did anyone else benfit from it? What did they say and promise?

 

thanks for your informative posts. speaking of money, what did the "project" cost? Can you disclose that at this point? How long was the wait between screening and surgery. thanks.

 

this isn`t disclosed info ... the treatement costs 36.000 euro`s .. .waiting time is only a few weeks to few months ... if you are eligible you can do it day after your inital screening ... most important is if anyone was cured or not by this treatement ...

And why M.I.A case it did not work however they promised it ..

 

the cost of surgery is of 36.000chf prepayment of 1 month. After examinations you can estabilish the date of surgery when you want.

 

About tinnitus there is only one person who had improvement. All the others (i know only 2 from Italy) they have been branded as "psychosomatic" and they could not do anything more. They do not have the money. Very important: the clinic is totally private. They do not accept any type of insurance agreement with health services of other countries.
They promise big improvements due to destruption of thalamic ways responsible (in my experience rather say ALLEGED.....) In fact it is clear from all the documents and not rumors of unofficial network, that such surgery only works for neuropathic pain, essential tremors, phantom limb pain, epilepsy, Parkinson's disease (less than the third stage), perhaps Alzehimer .... the first results are visible only after a minimum of 3 months but better after one year...one to 3 treatments are required to reach the terapeutic goal....this is another strange point. Dr. Jeanomonod is looking up away failures by invoking "the mind can be more stronger than surgery." READ ON PAGE: http://sonimodul.ch/home/concept. If you want i can try to found my old papers "information for patient" about a phrase who scare me night and day: "there are still unknown factors to explain the resistance of the symptoms" . They cover very well their ass because the failure rate is 50%. Read carefully in full!

Focused Ultrasound Foundation does not recognize tinnitus as a condition treatable by this method (you can find it on http://www.fusfoundation.org/ )

take care

 

Yes, we know the one from Italy, his name is Viking and he did an invasive brain surgery in the end. We don`t know how much it helped.

So did you pay a 1time 36.000 and get 1-2-3 treatements for this?

 

no not... 36.000 for single treatment. If you want continue you have to pay another time. The same for clinical examinations at 3 to 12 months. Nothing for free in Swiss. If you are going for it... He will have you sign a "pact" between you and him. You will sign a paper where you declare to understood verbally and accept the conditions....

I got to know him (viking and another girl). A very very kind and prepared person, monstrous knowledge . He is experiencing the most unpleasant moment of his life but i don't want to talk about his private life even because i fear he will die of despair. I met him along the time with another girl (always TCD), first on an italian forum that was closed (www.acufeniforum.net), and then in first person. A person in one piece. I tried to warn him .... to open his eyes ... but desperation makes you do things you would never do. Before making the intervention ... he had been diagnosed like all us, sane individual, without anxious/depressive manifestations, without cognitive limitations. He did all that was humanly possible to do, over the science. At the end of this shit story we were "dumped" as crazy .... but only Dr.Jeanmonod think this.......... praiyng for him....really lost and abandoned to himself

 

Thanks a lot for the information you provided about the procedure, your input is appreciated.

 

OK, Viking had HIFU done, not the "invasive" surgery. He asked me not to say it, but I feel it would be irresponsible to have people mislead any further, as people need to make informed decisions and the subject is getting heated.
Unfortunately, the Hifu procedure did not work for Viking.
Maybe its better to leave $40,000 to you children/family, and just off oneself if Autifony fails.
Catastrophic T sufferers are rejects of society so it would seem....we should be helped be put out of our misery.

 

Unfortunately I agree with Dan. Autifony is the end point for a lot of people. I was doing great until a loud bang changed things for me. I now have catastrophic T when before I heard it maybe 5% of the time. TRT works for mild stable T. It works very well. I have been in work today listening to loud reactive tinnitus all day and if Autifony doesn't come in I will take matters into my own hands. I've had this for a year. One month at raised horrible levels. As far as I am concerned this condition is an offence to intelligent sentient beings and yes we are outcasts of a society that can do absolutely nothing to help. Autifony is the last throw of the die but I believe it works. I believe it works very well and I believe it will be delivered to the market soon. I only hope I can hang on until it does.

 

Viking talked about the invasive procedure only to not create false hope and alarm and massive fraud trip to Swiss. I know him and I know why he acted so. He is responsible. He wanted groped. He didn't want to give false hopes. He put his head. Don't judge him badly. Pray for him. He did not deserve that end

 

@RCP1
Before I tried Trobalt I thought that tinnitus is irreversible but during taking this drug I convinced myself that tinnitus is reversible.

 

thanks for the info... just for my own understanding, do you happen to know what the following photo shows then?

www.tinnitustalk.com/threads/hifu-high-intensity-focused-ultrasound-surgery.276/page-17#post-111028

When I first saw the photo, I assumed that the gauze bandage was from the incisions i.e. invasive brain surgery (as also mentioned by @Viking himself...).

Not exactly helpful that someone posts the wrong information (intentionally). anyway, @Viking is still part of the forum (as we speak) but using another profile...

A (concerned) passerby

 

see my comments to you from my profile page (which is "awaiting moderation" for some reason...). see also this response from the expert of all experts on TRT, Dr. Nagler:

seriously... how futile can a response get? try replacing "tinnitus" with "cancer" and tell me what you think. Did you ever hear a doctor suggest to a cancer patient that he/she should just tell their cancer to get the hell off at the next stop? I sure haven't...

a (concerned) passerby

 

MIA, I dont quite understand it, why would people flock to Switzerland if he just had the procedure done and the results are not yet known? However, now that 3+ months have past with no improvement, it can safely be said that the procedure has unfortunately, failed Viking.

I pray and think of my friend Viking almost every day and I hope he is alright and hanging on - there are other treatments coming up - ones that dont require one to sell their left kidney.
Nobody is passing judgement on Viking. The fact that he told me the truth is good enough - the truth will come out in the end.

 

Yes, that is from the screws that tighten the stereotactic apparatus to the head.
They use local anaesthetic so it wont hurt when they are tightened, by I guess they leave a mark.
P.S. Invasive radio ablation does not involve cutting out chunks of skull, they use a thin drill to drill a hole above the target, then they insert a probe into the brain....
But anyways, this does not apply to this thread.

This is a very important fact statement. One which I kept repeating for years now on deaf ears.
I am very glad that people are taking off their pink rose glasses.

TRT works great for mild and STALBE tinnitus.
I believe it is CRIMINAL of TRT clinicians to insist that TRT works for any type of T, irrelevant of its characteristics! People with more than moderate tinnitus have been HURT by them.

P.S. I am sorry that your T got worse. It is a tragedy....but unfortunately I have seen it before.
@john2012 for example, sponaneously cured after 10 years of moderate reactive T, only to be blown away by a loud accident that took his T to new horrific levels....

Those are exactly my thoughts as well my friend.

Under what username do you think Viking is posting and do you have any reason to believe or suspect this?

 

I will just go to him to get scans because he has good EEG, but as Viking said i will say it, on should kill the bastard!

 

Thanks Dan. Yes it is a tragedy and it happened in a millisecond. A tragedy for me and my young family. Daddy won't be around much longer if autifony doesn't do a compassionate release soon. On a positive though I think autifony will deliver in next 18 months. I think T is going to be a very manageable condition soon

 

I still think one should not dismiss HIFU outright. I personally know 1 person who got an improvement of 50% and he is satisfied...Tbh, I was very hopeful of HIFU, until Viking failed and then MIA blew it out of the water (We still dont know who MIA really is LOL, for all I know its Viking! -as there are a lot of similarities in both their stories- both Italian, both met, both failed and both seeking another hifu treatment) i just dont know what to believe anymore - Im just gonna believe in Autifony for now lol.

 

I am glad you reached the conclusion to your own question by yourself...

 

Hey my man, I've been thinking about your posts for a few days and they have really haunted me. I just want you to know that your family cares about you deeply, and to remember that there are many folks here who suffered and came around to enjoying life again despite severe tinnitus. (@billie48 really comes to mind here.)

There's no doubt what happened to you was tragic, and it's OK to take time to grieve the loss of your "former" new normal. And like you said, it's also very possible that yours is just a spike. Mine has definitely had "ups" and "downs" and is mostly down lately, thank God, but then so is life.

Just know that a lot of people care about you. And maybe consider talking to your TRT counselor again if you haven't done that already--maybe there's more she can do to help you habituate.

Take care!

 

@marqualler

Thanks for your sentiments. Who knows it may revert back. Cheers for the comments.

R

 

he is here..rating posts (wtf). .not under any username LOL..just @Viking

 

Wonder why he isn't commenting?

 

no comment. LOL.

 

I'm not going to dignify that with a response lol