HIFU (High-Intensity Focused Ultrasound) Surgery

[NiNyu]

@NiNyu ... the fact that there is no absolute 100 percent guarantee is also my biggest stumble block to go ahead eyes closed. In the end I will be completely broke.

Can't we do a fundraiser?

I'm willing to support you. And I'm more than confident that many here would like to support you, patient X, as well in search of finding a cure or valid treatment for T.

He doesn`t do clinical trials because they know it works. There is no proof of concept needed. It works, depending on the case.

Well, that's something he claims. There are hundreds of other 'advertisers' that claim the very same thing about their T product. In any case, to confirm his theory about HIFU being a successful treatment for T (50% to 70% ?) wouldn't he need more test subjects and trials?

Just think about the good publicity this could evoke, 'Special clinic in Switzerland has finally found the cure for T.' Million of people would be coming to the clinic en masse. If HIFU really works, that is.

Moreover, I'm told on excellent authority that the prof. allegedly himself is a T sufferer. So why not treating himself with HIFU then, or is he still in psychotherapy? I'm just saying..

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)

Resistance to TRT and psychotherapy? Really? This statement really scares me! T is a physical thing not a mental thing!!! Anyway, how could you prove that TRT etc didn't work? So you would have to enlist in a TRT course first?

 

[attheedgeofscience]

Just think about the good publicity this could evoke

Perhaps it would be best to find out if he is a candidate for surgery first. Candidates for surgery = statistical significant observation of thalamocortical dysrhythmia.

 

[NiNyu]

Why wouldn't the brain readjust itself to the new hearing as it -possibly- adjusted in the damaged one?

Neurons won't die that easily. That's why removing/obliterating them could be a solution.

That is exaclty what is hard for me to believe. That they simply found which specific areas in the brain causes tinnitus and can simply aim, fire and eliminate it! It seems to much of a miracle surgery to be true.

It's all not that simple, but yes, T mainly dwells in the auditory cortex. The neurons there are not addressed by the sensory cells in the cochlea anymore and go apesh*t -- creating their own noise. And they will never stop since they are being nurtured like all other neurons in the brain. If we can't find a way to fix the sensory cells or nerve damage the only way to get rid of T is destroying the neurons in the brain. Of course, in that way we lose frequencies, but they are not being addressed anymore anyway.

 

[nills]

@NiNyu

I didn`t know he was a T patient ... I do wonder why he wasn`t been under the beam himself.

I havnt done any TRT or anything except taken cortisone ... My attitude is if it doesn`t cure, no need to spend money on it ... HIFU does seems to give me more confidence in it1s approach .. also because the effect would be immediately.

I did think about a fundraiser or something ... but there are so many people out there needing money for some sort of treatment ... i`m just one of the lot..

 

[NiNyu]

Candidates for surgery = statistical significant observation of thalamocortical dysrhythmia.

You may be right but -- I wouldn't care about it. Just ablate the whole damn hyperactive auditory cortex!
I'd be willing to take the risk of complete deafness as long as T is erased. I'm desperate.

 

[attheedgeofscience]

I wouldn't care about it.

No, but Prof. Jeanmonod would. And hence you would not be a candidate for surgery (if no TCD is found).

 

[joejunior]

Ok, let's say it is a 3D MRI and the exact coordinates of a specific spot are given. They will have to ablate around that spot? At what distance? Spherically? I would be interested to know all these, they are important since precision is of importance.
So, if they are so precise, what happens if you breath, swallow during the pressedure?

Also, what happens to the pain caused in the ear that accompanies hyperacusis? Many tinnitus patients do have that. Frying the brain will make the pain stop along with T?

Your head will be in a fixed position during the procedure which is short. The ablate precisely the spot of interest, the accuracy is high, HIFU has been used successfully for some neurological conditions.

The key question now is when it will be developed and rolled out for tinnitus, for example at an NHS research hospital.

There needs to be seamless transition from bench to bedside , ie translational medicine, to expedite the process so that the focus is on the patient - always.

 

[skoupidis]

Neurons won't die that easily. That's why removing/obliterating them could be a solution.
It's all not that simple, but yes, T mainly dwells in the auditory cortex. The neurons there are not addressed by the sensory cells in the cochlea anymore and go apesh*t -- creating their own noise. And they will never stop since they are being nurtured like all other neurons in the brain. If we can't find a way to fix the sensory cells or nerve damage the only way to get rid of T is destroying the neurons in the brain. Of course, in that way we lose frequencies, but they are not being addressed anymore anyway.

Nills however had asked them and they replied that if a treatment for reversing hearing loss is ever found, HIFU surgery will not hinder it, meaning you would be able to get your lost hearing back, iven if you have fried those neurons! How's that happening? And how is he so sure?

 

[skoupidis]

Perhaps it would be best to find out if he is a candidate for surgery first. Candidates for surgery = statistical significant observation of thalamocortical dysrhythmia.

Ther is a candidate for surgery in this forum. He is found positive for surgery after the initial visit. He is actually considering it. He is non other than @Viking (Ivan).
I would be happy to support him if he decides to proseed. He stood by me, has been a real friend and helped me with my case a lot. I met him in this forum. He could be the first, but I don't know if he has decided to proceed.

 

[NiNyu]

Nills however had asked them and they replied that if a treatment for reversing hearing loss is ever found, HIFU surgery will not hinder it, meaning you would be able to get your lost hearing back, even if you have fried those neurons! How's that happening? And how is he so sure?

I think that's 'cause the brain is capable to create new neurons. But it takes time..

I am willing to support those that are genuinely eligible for HIFU too. That being said, I'd like to see a patient X.

 

[linearb]

"We know this works, so we don't need to do a controlled study", said no scientist anywhere, ever.

 

[nills]

"We know this works, so we don't need to do a controlled study", said no scientist anywhere, ever.

No it`s true it hasn`t been stated like that. But they know it works ... so they don`t need to do a study to proof it works ... kind of the same statement but it`s true

Jeanmonod did tell me he did n`t know of any clinical trial with HIFU in the world and would not do one. These are the essence of his words emailed to me.

 

[joejunior]

Looks like the NHS are looking at this for cancer in the UK, and also that Ablatherm ( the French co that makes HIFU) is seeking de novo rather than FDA approval ( which is faster in the US) .
http://www.itv.com/news/2015-01-21/ultrasound-a-new-frontier-in-cancer-treatment/

We need expeditious trial and assessment for tinnitus, followed by immediate roll out if it works.

 

[joejunior]

Here is what HIFU procedure looks like, at best it is very precise surgery, without the surgeon and the risks of surgery,

http://geneticliteracyproject.org/2...ries-may-be-replaced-with-ultrasound-therapy/

 

[joejunior]

The RTNE hospital on Grays Inn Rd should be at the very least looking at the HIFU machine at the Royal Marsden and ideally conducting some trials. Both are NHS teaching hospitals so are in the same organization. I will write to them to inform them and ask what they are doing. Anyone else can write, can just be a short email, a couple of sentences direct your query at the RTNE hospital , research, rather than the Marsden.

Sent letter.

 

[Aziz Khan]

Thanks so what is the conclusion now

 

[NiNyu]

Thanks so what is the conclusion now

The HIFU was used to burn away the nerve endings on their bones where they felt the most pain and, so far, all of them have shown good results.

It sounds promising!

 

[preslys]

why there are only two machines ?

 

[Viking]

why there are only two machines ?

There aren't only 2 machines. Steretassic treatmens are well know by many doctors and hospitals for the cure of cancers. The problem is this (it is only a my opinion): there is poor research on the potentially of this machines. The drugs cost low. The machines cost a lot. Those machines cure a lot of disease and tinnitus is one of this:


The producers Insightec produce many type of machine for the treatment of various disease es: exablate 2000 is available in many country for the treatment of noninvasive ablation of cancers.

Exablate 4000 is used for parkinson, essential tremors, tinnitus, stroke, others drug resistant brain disorsders.

1) Problem: The governments of various nations in the world don't know what is this machine and i suspect that big pharma want hide it.

2) Tinnitus is not considered a disease but a "simple symptoms". WRONG! I'm an example because i'm going for a thalamotomy of brodmann area 22 after years and years of sufference and ineffective drugs treatments

3) Insightec promove and produce this machines by manu years but only the doctors can "convince" their superior to buy it

There are a lor of medical and video reports about the non invasive treatment of brain disorders with a success of minimum 50%...... i will never understand why the governments forced the patients (suffers) to go out of their country to find some relief.







This machines work a lot instead drugs and invasive (riskous surgery).... it is only a question of money and knowledge!

damn ignorance

 

[MarioT]

2) Tinnitus is not considered a disease but a "simple symptoms". WRONG! I'm an example because i'm going for a thalamotomy of brodmann area 22 after years and years of sufference and ineffective drugs treatments

@Viking What kind of procedure is this? Gamma knife surgery? Which doctor recommended that to you? What is the probable outcome of this? Can this indeed lead to T reduction? When are you doing the thalamotomy?

 

[preslys]

Celebrities with tinnitus

• Martin Luther
• Phil Collins
• Cher
• Morgan Fairchild
• Cheryl Tiegs
• Ozzy Ozborne
• Huey Lewis
• Ludwig van Beethoven
• Sylvester Stallone
• Larry King
• Bono
• James Hetfield
• Jack Straw
• Pete Townshend
• Peter Sun
• Betsy Casey
• Chris Martin
• Gary Numan
• Eric Clapton
• William Shatner
• Barbra Streisand
• Steve Martin
• Leslie Nielsen
• Engelbert Humperdinck
• Gabe Lopez
• Lars Urlich
• Bob Dylan
• Leonard Nimoy

Is it the question of money for these people ?

 

[nills]

Celebrities with tinnitus

• Martin Luther
• Phil Collins
• Cher
• Morgan Fairchild
• Cheryl Tiegs
• Ozzy Ozborne
• Huey Lewis
• Ludwig van Beethoven
• Sylvester Stallone
• Larry King
• Bono
• James Hetfield
• Jack Straw
• Pete Townshend
• Peter Sun
• Betsy Casey
• Chris Martin
• Gary Numan
• Eric Clapton
• William Shatner
• Barbra Streisand
• Steve Martin
• Leslie Nielsen
• Engelbert Humperdinck
• Gabe Lopez
• Lars Urlich
• Bob Dylan
• Leonard Nimoy

Is it the question of money for these people ?

unless they know about tinnitustalk i`m pretty sure their ENT doesn`t know about HIFU. + it is very new treatment that started last year.

PS; I think Ludwig does n`t give a rats ass anymore, bless his soul.

Beethoven famously complained: 'My ears whistle and buzz all day and night. I can say I am leading a wretched life'

 

[Viking]

@Viking What kind of procedure is this? Gamma knife surgery? Which doctor recommended that to you? What is the probable outcome of this? Can this indeed lead to T reduction? When are you doing the thalamotomy?

My aberrant tinnitus can be improved by central lateral thalamothomy invasive or non invasive (i haven't tee money for the second). All doctors recommended this type of surgery from Jeanmonod to Magnin, Llinas etc. There aren't others strategies to give me some relief and also i have a clear diagnnosys of severe thalamocortical dysrhythmia, then the surgery is urgently required. The important point is this: the tinnitus is a very similar to central pain. Change only place. My damned tinnitus is located has origin in brodmann area 22. Now i can't explain better from mobile phone but if you have time could search "thalamotomy and pain" or thalamocortical dysrhythmia and you will discover that this disabling conditions of brain disorders include the tinnitus!

Best wishes and see you later

Celebrities with tinnitus

• Martin Luther
• Phil Collins
• Cher
• Morgan Fairchild
• Cheryl Tiegs
• Ozzy Ozborne
• Huey Lewis
• Ludwig van Beethoven
• Sylvester Stallone
• Larry King
• Bono
• James Hetfield
• Jack Straw
• Pete Townshend
• Peter Sun
• Betsy Casey
• Chris Martin
• Gary Numan
• Eric Clapton
• William Shatner
• Barbra Streisand
• Steve Martin
• Leslie Nielsen
• Engelbert Humperdinck
• Gabe Lopez
• Lars Urlich
• Bob Dylan
• Leonard Nimoy

Is it the question of money for these people ?

Probably they don't suffer of SDT (severe disabling tinnitus) infact they have a good quality of life... they are celebrities. I'm near the 0%. It is a miracle that i'm still alive... words of Rodolfo Llinas!

 

[skoupidis]

PS; I think Ludwig does n`t give a rats ass anymore, bless his soul.
'

Martin Luther, Leslie Nielsen and resently Leonard Nimoy wouldn't mind either!

 

[NiNyu]

Why are there no clinical trials conducted with HIFU yet?

 

[Viking]

Why are there no clinical trials conducted with HIFU yet?

Because not all tinnitus are equal and this is the first year of specific treatment. I don't know how many persons have received the non invasive hifu treatment but i know that 22 persons had received a CLT (central lateral thalamothomy) for catastrophic tinnitus with a success rate between 30% to 70% to full soppression. Depending by the origin and the diagnosys. of course before the surgery, all pharmacological attempts was done for at least 2 years.
Hifu is only the non invasive way but we are talking always of a thalamothomy (then of a surgery know since the 50's) of the areas brodmann 41,42 or 22. Repeat, all depend by the source in the brain. Tinnitus is a multifactorial disease. Where i'm going is the "extrema ratio". I hope that others suffers never stay one day in my shoes!
Best wishes and pray for me

 

[JeffDamsko]

The brai2n clinic?

Not in brai2n clinic, there they offer
-non invasive: TENS, TMS, Neurofeedback, TDCS, TRNS
-invansie: Backbone marrow stimulation, Cortical neurosimulation, Perifery neurosimulation, DBS, Intrathecale Baclofentherapy (sorry can't translate that one )

source: http://www.brai2n.com/nl/patient/behandelingen/behandelingen

Also not sure whether they use all of these for tinnitus. I'll be there for a follow up on the 23rd April and get offered treatment options. Will report on this in thread : https://www.tinnitustalk.com/threads/brai2n-tinnitus-clinic-in-belgium.7/

Right now on their prescribed clonezapam & Deanxit, seems to take the edge of but t still there and no real change in it.

 

[JeffDamsko]

Why are there no clinical trials conducted with HIFU yet?

I think its mentioned in the thread somewhere that the clinic offering this is still researching using this technique for tinnitus, and isnt actually offering it for tinnitus right now.

 

[JeffDamsko]

There should be enough severe T sufferers here willing to participate in a HIFU clinical study. Once this study shows conclusive results there should be plenty of patients/clients for Sonimodul – The Center of Ultrasound Functional Neurosurgery. Unfortunately, the prof. is not interested in trials.

Now, I do wonder why? I mean, if you have a space machine that potentially improves/cures T what are you waiting for? Why building a wall around tens of thousands of potentially customers?

Because if this would work for everyone it would be hard to implement because of high investment costs involved, there are only a few machines like this available right now, I think someone mentions there is 2 in whole of EU somewhere in this thread.

34000 euros for the treatment. However, no guarantee of success can be linked to this payment?
Moreover, how come that no celebrity with T has been cured/treated with HIFU?

Maybe havent heard of it yet, or ones that have not convinced or scared.

 

[attheedgeofscience]

Not in brai2n clinic, there they offer
-non invasive: TENS, TMS, Neurofeedback, TDCS, TRNS
-invansie: Backbone marrow stimulation, Cortical neurosimulation, Perifery neurosimulation, DBS, Intrathecale Baclofentherapy (sorry can't translate that one )

Thanks for the information. I am aware, however, of the work of the brai2n clinic (as well as the fact that it does not offer HIFU). Indeed my earlier comment was a leading question - and without a question mark - to another member of the forum who apparently seemed to suggest that the HIFU-procedure takes place at the brai2n clinic. Even if the member had made a purely random guess as to which of the two clinics offers the HIFU-treatment he would have had a 50% chance of getting it right. Still the member managed to get it wrong and despite key words such as "HIFU", "Prof. Jeanmonod", and "Switzerland" being used ad nauseam within this thread. Impressive.

This - now 439 post thread - also highlights another problem with specialized procedures being discussed on a public forum. Of the 439 posts, only a handful have any real relevance to the matter at hand i.e. "HIFU". And of that handful I can safely say that my own account is the first and most informative of the posts. Interested readers can find the account of the diagnosis Prof. Jeanmonod can perform in relation to establishing whether a patient is a candidate for surgery or not here:

www.tinnitustalk.com/threads/new-upcoming-treatment-hifu-high-intensity-focused-ultrasound-surgery.276/page-8#post-75063

Differential diagnosis of TCD can be found here:

www.tinnitustalk.com/threads/new-upcoming-treatment-hifu-high-intensity-focused-ultrasound-surgery.276/page-10#post-94538

Thanks to @Viking for adding some proper value to this thread by sharing his EEG scans.

attheedgeofscience
12/APR/2015.