HIFU (High-Intensity Focused Ultrasound) Surgery

Hi Louise, I know that 'not you again' look but since I had a undiagnosed condition which I soldiered on with for a year ( not related to my tinnitus) my GP believes everything I say and has a completely different attitude - before that I think they saw me as a malingerer or hypochondriac when it came to tinnitus, I douby they know what a MEG is ( I dont either) but I will ask for one anyway!

 

Go for it Joe, get them whilst you're still in that honeymoon period of them knowing they were wrong and you were right!!

 

will do, better find out what it is first!

i do think that dealing with tinnitus, made me much more accepting of my serious yet misdiagnosed condition when it came along, as in the symptoms though awful i have to accept as medicine cant deal with it just like tinnitus. how wrong was I. the symptoms of tinnitus now have the biggest impact on my quality of life, tinnitus is a harder nut to crack and has less research which makes it doubly difficult. thats changing i think / thankfully.

back to hifu: this may have been posted already as i saw it somewhere:

Dr Jeanmonod's clinic:
http://www.sonimodul.ch/atelier/index.cgi?s=en#sthash.idb0Dq6T.dpuf

 

Yep, with the medical profession with T you are on your own. Good job there is somewhere like here to pool ideas & info.

 

" If a psychological cause of the tinnitus is present and not treated, the surgery could be ineffective." I would really like to know what this psychological cause is! No one has ever explained that. Another question that it generates is this: If the T isn't caused by psychological factors or loss of hearing, then what? Seems to me that they are struggling to understand the causes and reasons, one would believe it was of great benefit to really understand the causes before cutting and slicing? I've the seen the list of possible T causes and it's as long as the end credits of Ben-Hur.

 

Some people develop tinnitus through depression or stress. Sometimes it can be linked to a post-traumatic incident, too.

Anyway, an American company called Cervel Neurotech just recently applied for a patent on a type of HIFU treatment for tinnitus, so maybe we'll see some news in the near future.

I guess we could sent them a line asking about this new treatment.

 

I think it's more like some psychological condition causing a physical damage to hearing system and then tinnitus.
Like phantom limb there must be a physical damage happened in the process, just tinnitus's exact damaged area were too hard to find.

 

I did drop them a line, they have replied..... they definitely have not applied for a patent for anything to do with tinnitus. They do not have any on-going research into tinnitus treatments.

 

Here is the standard Tinnitus patient email that Jeanmonod sends to those inquiring about the treatement.


Dear patient,

Thank you very much for your questions concerning the treatment of tinnitus. The following points may be mentioned :

1) A neurosurgical treatment of tinnitus, based on the concept of thalamocortical dysrhythmia and using the technology of focused ultrasound, can only be considered when tinnitus has become chronic (at least 1 year), invalidating and therapy-resistant (resistance to drugs, tinnitus retraining therapy and psychotherapy)

2) There has to be a known audiological cause to the tinnitus (auditory nerve problem/damage, relevant hearing trauma, etc.)

3) Needed is a description of the tinnitus localization (ears, head, which side)

4) And a description of the qualities of the tinnitus perception (pure tone or noise, frequency, narrow- or broadband)

I would need from you one or more detailed ENT report(s). On the basis of these data, I would be able to decide if an outpatient diagnostic consultation of a whole day is indicated, with clinical and quantitative EEG examinations. This consultation would allow to determine if a focused ultrasound treatment is indicated.

Focused ultrasound treatments for tinnitus will only begin in one or two years.

With my kindest regards

D. Jeanmonod MD

 

Good post Nills. What do you think "Focused ultrasound treatments for tinnitus will only begin in one or two years." means? That they are only due to start performing the treatments then or that this is how long the waiting list is?

What he neglects to mention is that you have to have your head shaved and be in the MRI scanner for 5 hours, awake, with jets of ice cold water being showered onto your head (presumably to stop your head bursting into flames from the heat of the laser). I have an email from some Swiss HIFU guy to this effect.

Still, if it got rid of my tinnitus I'd do it in a heartbeat, who needs hair?

 

what swiss HIFU guy gave you this info? I think Jeanmonod is Swiss, no? Wich is the scan you describe? EEG?
I don`t mind a cooked brain if it turns out silent

 

A cooked brain and a $40,000 hole in your pocket

 

I think it's cool that this exists and that they are developing on it and what not, but I would not go near this for a very, very, very long time. I'd need to see a bucket load of clinical evidence for it's efficacy and safety. Permanently changing your brain with lasers seems like overkill for something like tinnitus, unless of course you were suffering from some very extreme case of it.

 

I've been reading up on this procedure on the net.
This procedure is called a thalamotomy (Google it). Michael J.Fox had one using a brain probe instead of lasers, so this concept is nothing new, except it has not be experimented specifically for tinnitus. They inserted a very thin probe and ablate specific areas in the thalamus. Michael J.Fox said in an interview that he was willing to take the 5% chance of brain hemmorage and/or severe incapacitation or death. Thankfully, his major tremor was relieved. He was operated upon by the best obviously.
So far there is a unifying theory that tremors (Parkinson's), neuropathic pain, and tinnitus share a common brain pathway along with some other functional brain disorders such as schizophrenia, ocd, etc, and this "theory" is called thalamocortical dysrhythmia. However the actual procedure of hifu has never been done on T patients before as a primary complaint, nor had any previous thalamotomies been performed specifically on tinnitus patients. 3 out of 6 neuropathic patients with tinnitus had there tinnitus relieved as a side effect.
So anybody thinking of trying hifu thalamotomy operation has to weigh in mind the 3-5% chance of severe side-effects. The upside of hifu is that there is no drilling of the skull and that it is slightly more accurate than physically probing since it is all computer controlled, like in Star Trek.

 

The question is if the docs and experts are ready to perform dis for tinnitus. And if they are. Will they target the same areas as those for Parkinson's or chronic pain. Also I m wondering if any 1 knows of connection of tinnitus with vestibular loops(I kno it's a bit off topic here...but seems related).

I m sure if given a chance almost all T sufferers will take d chance. I would if they can com up with a T specific protocol for performing this op

 

I can tell you with 100% certainty that they will target different areas than Parkinson's or chronic pain.
For example with Parkinson's they targeted the motor control nucleus of the thalamus, in pain, the pain nucleus.
However since tinnitus is a complex brain pathology spanning the many parts of the brain, there can never be a set tinnitus protocol. They target hyperactive areas in each and every case individually.
As for your opinion that if given a chance almost all T sufferers will take the chance, I beg to differ. 80% of people with T, don't give a damn about it and since there is always a risk and a hefty price- I think most would actually opt out, especially as so far as we know for chronic pain patients the rate of success is roughly 50% chance of excellent and 50% chance of poor relief, if any, and we all know how much harder it is to treat tinnitus.
Something to think about I guess.............

p.s. damage to the cochlea can damage the vestibular hair cells and affect balance - if that was your question.

 

I bet those 80% have a tiny little noise that they can hardly hear. No-one could "not care" about the noise we have to deal with.

Great information Dan. So in 1 to 2 years and with $40 to spare we can all have a go.

 

Haha...$40 I wish! more like $40,000! LOL....but yes in 1-2 years is when the first paying guinea pig is going
inside the giant laser.
p.s. they will be weeding out the sissys with their soft tinnituses and sending them for psychotherapy, lol.

 

I`m on a mission to do this ... it`s nr 1 on my list. I`m saving the money and will have it in little more than 6 months ... than i`ll fly to Swiss and see what it is all about ... hopefully by than they discovered the magic cure and I don`t need to go through with it ... if not, i`ll be the pig to fry his brain ...

 

I've been seriously debating biting the bullet, too. I'd just like to see at least one persons testimony before I shell out close to fifty grand. If this procedure does actually work, I'd be more than happy to shell out that kind of cash.

 

I will BET 50 Grand a cure won't be found/released in the next 1-2 years
However Autifony has published a study which abolished tinnitus in rats completely and is in phase 1.
Lets us hope they are no AutiPHONEY.

Well, Nills will be our first hifu guinea pig, so let's wish him all the luck! And promise you report back to us
with your new brain

Any more guinea pigs here??? . . .

 

B*gger I may edit that post - I had put 40K and then realised it was dollars.

When I emailed these guys, (presumably its the same people), I got a reply back about the detail of the procedure (head-shaving, 5 hours in an MRI scanner AWAKE whilst they ablate you, etc). Then when I replied to ask if they need volunteers (ie. I cant pay) the conversation became very one-sided (ie. he didn't reply). LOL.

 

Yeah that is a strictly private clinic. The doctor who founded it, used to practice at the University of Zurich. However, after a fallout with the university and research community because they wanted to study hifu effects for longer, he got booted out and started his own clinic using his own money. He invested millions out of his own pocket, so now he needs to get a return on his investment....

 

You know your HIFU don't you Dan? lol

 

@dan
I agree. true if t is not loud or bothersome. Most ppl would infact if mine comes down I might too (oh...how I hope that happens). But when it's loud and interferes with everything u do its a different story.

@t-man @nills
Bravo guys. Do share your experience and ofcourse we'd n need atleast some feedback or something bfor committing.

@Louise
Great point about goin silent. I dont get it why nit just reply and say how far you're reached or not reached in your work for that matter. This would rather than silence.

Oh and Dan. I donno whether there will b a cure but atleast we can hope as long as we have people lIkea US asking questions sooner rather than later there will be something and we'll be the 1st to know.

Oh I meant vestibular loops near the route exit zone which can cause tinnitus and chronic facial pain.

Cheers

 

@Dhaval
As far as I know, there is nothing so far connecting the vestibular system with chronic facial pain or even tinnitus.
I do however know that they theorize brain changes that cause tinnitus also can cause chronic facial pain and hyperacusis. For example people with fibromyalgia (a form of neuropathic pain) often experience a special type of pain that if they are only touched in certain areas (i.e. face) they experience acute and extreme pain and is called Allodynia.
It is theorized that hyperacusis is a form of auditory allodynia in tinnitus sufferers.
Allodynia (Ancient Greek άλλος állos "other" and οδύνη odúnē "pain") is a pain due to a stimulus which does not normally provoke pain.[1] Temperature or physical stimuli can provoke allodynia, and it often occurs after injury to a site. Allodynia is different from hyperalgesia, an extreme, exaggerated reaction to a stimulus which is normally painful.

@Louise
2 years of having severe tinnitus makes you know stuff.

 

So, how is this research going? Is there any link to the actual research?
Iv had tinnitus for 10 years now, and latetly its gotten worse. Its driving me insane ..

 

Send Dr Jeanmonod email last week ...

Dear Mr Jeanmonod,

Thank you for your reply of late. There are still some questions I have concerning the treatment which I`m sure can be answered if we would meet in person. Yet one question I have I hope you can answer shortly in an email.

Some research is happening to regenerate the lost hair cells in the ear and thus reversing deafness and also noise induced Tinnitus. What would the effect of HIFU treatment be on the outcome of a possible hair cell regeneration in the future? Would the correlating part of the brain damaged by the HIFU refuse the new sounds to be processed or do you feel this is a complete different part of the brain - or would brain plasticity help the new sounds to be processed no matter the ablated part of the brain. and thus leading to reversing the lost hearing?

And second; I am more than willing to join any clinical trials, I am not bound to any work/family situation and have funding to travel to any country if needed. Is there any clinical trials for HIFU and Tinnitus ongoing or coming in the future?

reply;

Dear Mr. ...

1) Our approach does not impede any possibility of cell regeneration or its beneficial use by the auditory system.

2) There are no other planned trials for HIFU in tinnitus worldwide that I am aware of, and I suspect for a significant time still. This is because neurosurgical treatment of tinnitus has been rarely developed and proposed to patients.


With my kindest regards

D. Jeanmonod

 

Hello,
Was anyone given an estimate as to how much this procedure will cost?
I saw different numbers in different posts/places.
I assume that the procedure will be priced in Swiss Francs?

Would greatly appreciate this info as it will help me plan ahead as far as my options for treatment.

Thanks
-Alex

 

Does anyone know where the second machine is? Because I contacted Jeanmonod on the use of this for hyperacusis and tinnitus and was told that they could not help me. I figure its still worth it to check with anyone else doing this.