HIFU (High-Intensity Focused Ultrasound) Surgery

[nills]

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.

They CAN help with Tinnitus. Be careful you don`t phrase it wrong. In little over 1 year treatments can start he told me. They need all your ENT files and additional tests to see if this type of treatment would work for a specific case. Price I am unsure. atleast 25000 EUR is my guess but we will have to wait for that.

Second machine might be in Israel where they built it ... search the web for the name of the machine they use, you will cone across it i guess.

 

[Erlend]

Is there any evidence that this will work?

 

[makoda]

Nills,

Thanks for catching that. Yes they can help tinnitus and I believe hyperacusis both. They "wouldn't" help me is the more appropriate term. But this will not stop me from exhausting every avenue to try and get relief, so that is why I was looking for the other machine.

Thanks

 

[nills]

Is there any evidence that this will work?

not officialy, I don`t even know if they have treated someone yet. To get answers to these questions w`ll need to call him or see him personally.

 

[Alex TCD]

Hi Nills,

Thank you for the info regarding estimated $$$$$

I would like to mention something that may not be new here. . Please take what I say with a grain of salt as I am not an expert:

As far as I know, some people who have tinnitus actually have a condition called thalamacortical dysrythmia (TCD) that is playing out as tinnitus. There are tests that can determine if one has TCD.
The procedure that Dr. Jeanmonod offers addresses the TCD. If successfully addressed, the tinnitus may significantly diminish.

Here is an article from the New York Times that discusses TCD;
http://www.nytimes.com/2008/12/02/health/research/02prof.html?pagewanted=all&_r=0

Hope this is helpful.

Best of luck to all of you.,

-Alex

 

[DebInAustralia]

Do you have TCD Alex?

 

[nills]

Thanks for that Alex ... that is a really interesting and hopeful article. It is starting to look like they are discovering what wrong. That is a huge step. Before Tinnitus was a mistery, but it is slowly giving away it`s secrets ... I will do an MEG - EEG this year and see what this will bring up.

Here is wikipedia on it:

Thalamocortical dysrhythmia
From Wikipedia, the free encyclopedia
Thalamocortical Dysrhythmia (TCD) is a theoretical framework in which neuroscientists try to explain the positive and negative symptoms induced by neurological disorders like Parkinson's Disease, neurogenic pain, Tinnitus, Epilepsy as well as neuropsychiatric disorders like depression.
In TCD, normal thalamocortical resonance is disrupted by changes in the behaviour of neurons in the thalamus.
TCD can be treated with neurosurgical methods like the central lateral thalamotomy, which due to its invasiveness is only used on patients that have proven resistant to conventional therapies.

Contents

• 1 Background
• 2 Evidence
• 3 Therapy
• 4 External links

Background
At the base of the theory lies diminished excitatory or increased inhibitory input at the thalamic level. This leads to a switch of the thalamocortical neurons from tonic to burst firing and subsequently entrains thalamic and cortical areas with pathological oscillations at around 5 Hz.

Evidence
Evidence for TCD comes from Magnetoencephalography (MEG), and Electroencephalography (EEG) recordings on the scalp as well as local field potential (LFP) recordings in the patients' thalamus during surgery. Analysing the power spectra reveals increased coherence as well as increased bicoherence in the power spectra in the theta band compared to healthy controls. This indicates a close coupling of cortex and thalamus in the generation of the pathological theta rhythmicity.

Therapy
While it is not clear how this happens in detail, surgical intervention by means of lesioning small parts of the central lateral thalamic areas has proven successful as a therapy for Parkinson's Disease as well as neurogenic pain.

Neurofeedback, where the brain is trained to emphasise and de-emphasise brain wave frequencies, amplitudes and coherence can be an effective non invasive therapy.

----------------------
Dr. Jeanmonod uses the term `lesioning` also when speaking about his approach with HIFU, only diffrence is there is no more cutting and opening the skull involved (!) which will make the future alot easier for neurosurgical treatments.

let`s hope the price goes down.

 

[dan]

Nills,

Thanks for catching that. Yes they can help tinnitus and I believe hyperacusis both. They "wouldn't" help me is the more appropriate term. But this will not stop me from exhausting every avenue to try and get relief, so that is why I was looking for the other machine.

Thanks

Makoda, why would they not want to help you? What is the reason? Thanks.

 

[makoda]

Makoda, why would they not want to help you? What is the reason? Thanks.

These were the replies I got.

#1
Thank you for your email.
We are sorry, but hyperacusis in itself is not an indication for a neurosurgical treatment. Therapeutic measures are to be discussed at best with ENT specialists.
We wish you all the best.
#2
Dr. Jeanmonod and myself just reviewed your last emails. We are sorry but we have to refer you back to my last email, where we informed you that hyperacusis is not an indication for a neurosurgical treatment.
We wish you all the best and send you our kindest regards.

 

[Alex TCD]

Do you have TCD Alex?

Yes, I do have TCD.

 

[dan]

These were the replies I got.

#1
Thank you for your email.
We are sorry, but hyperacusis in itself is not an indication for a neurosurgical treatment. Therapeutic measures are to be discussed at best with ENT specialists.
We wish you all the best.
#2
Dr. Jeanmonod and myself just reviewed your last emails. We are sorry but we have to refer you back to my last email, where we informed you that hyperacusis is not an indication for a neurosurgical treatment.
We wish you all the best and send you our kindest regards.

I see, thank you for your response Makoda. So you only have hyperacusis as I understand it.

 

[makoda]

I see, thank you for your response Makoda. So you only have hyperacusis as I understand it.

No I have both. Have had tinnitus forever. Although it can be very hard to deal with, hyperacusis is my real problem. It is so severe I am not able to leave the house.

I explained I had both to them as well as gave quite a bit more info to them. It was just frustrating to get a 2 liner response.

 

[dan]

No I have both. Have had tinnitus forever. Although it can be very hard to deal with, hyperacusis is my real problem. It is so severe I am not able to leave the house.

I explained I had both to them as well as gave quite a bit more info to them. It was just frustrating to get a 2 liner response.

That is awful to hear.
So,,,,,,,if you can't leave the house , how do you suppose to travel to Switzerland for a consultation, let alone for a 5 hour operation under continuous 3Tesla MRI...
Also may I suggest speaking to him personally?

 

[Erlend]

Can hyperacusis just come out of nowhere for T people? Damn.. That's scary

 

[baddream]

yeah i am most afraid of hyperacusis..even though I have pretty awful T in the back of my mind I'm always thinking it can get worse..and with my luck it might just pop out one day and surprise me :/

 

[Aaron]

"Dear Mr. Ma,

We have not yet started the treatments for tinnitus. Let us keep in touch.
With my best regards

D. Jeanmonod"

For other members, they haven't begin it with T

 

[makoda]

That is awful to hear.
So,,,,,,,if you can't leave the house , how do you suppose to travel to Switzerland for a consultation, let alone for a 5 hour operation under continuous 3Tesla MRI...
Also may I suggest speaking to him personally?

Dan I have been exposed to really loud noises with this condition. I pass out from the pain, that being said if I found something that could stop this I will push my body to its death trying because life with this sucks. And I really keep hoping to be able to play with my kids one day again before they are grown. As far as calling I gave info to request a talk on the phone or over Skype but they were obviously not interested. So instead of beating it to death I am looking for answers elsewhere. I will find something eventually.

As for the other questions about it popping up out of nowhere, well, yes this is how it happened for me. Just hit all of the sudden one day. So although tinnitus is no fun, you can always be glad you don't have this. My advice would be to not keep exposing yourself to loud noises. Although I tried to be careful with plugs I still worked construction which I wish I would have switched to something quieter sooner.

 

[dan]

not officialy, I don`t even know if they have treated someone yet. To get answers to these questions w`ll need to call him or see him personally.

Hi Nills, I have been in touch with him and this is what I know to be fact from him:
1) There have been NO tinnitus patients treated for tinnitus with the hifu technology to date..
2) They discovered the potential to cure tinnitus as a secondary effect from treating neuropathic pain patients using Invasive lesioning using radiofrequency technology (drilling of skull inserting probe, etc).
3) 5 out of 8 patients suffering tinnitus as a secondary to pain, had more than 60-100% improvement in tinnitus.
4) Treatment of tinnitus patients will begin sometime next year.
5) They target a modulatory area in the thalamus - do not touch tonotopic pathways, hearing not affected.
6) Patient must have tinnitus of Neurogenic origin - not psychogenic. This is determined from qEEG scan (alpha, beta, gamma, theta brain activity levels)
7) Cost of scan/consult = 3200 Swiss Francs - no refunds for non-candidates
8) Cost of surgery = approx. 30,000 Swiss Francs
9) Surgery time = 5-6 hours with 24hr stay in hospital for observation.

I post these facts so as to save you guys some time and understanding before if you ever speak to Dr.Jeanmonod.
Thanks you and keep us posted for developments/informations, as I will.

 

[Hattukoira]

6) Patient must have tinnitus of Neurogenic origin - not psychogenic. This is determined from qEEG scan (alpha, beta, gamma, theta brain activity levels)

What does that mean? Does that mean that it can't help patients with 'imaginary tinnitus'?

 

[dan]

What does that mean? Does that mean that it can't help patients with 'imaginary tinnitus'?

Good question Hattukoira,
It means that the tinnitus must be diagnosed at thalamo-cortical dysrhythmia and that will show on the scan very clearly. If the tinnitus is originating purely in the limbic system , that may be a problem and he would probably recommend psychotherapy, counceling and TRT. In other words if there is not TCD diagnosis, a surgery is not indicated.
I hope I clarified your question.

If anybody finds out more answers, please post them on this thread, that would be greatly appreciated.
Lets make this a team effort

 

[Lep]

Hi all, I joined this forum three months ago but I have never written anything because my story is very sad so I don't want to discourage new tinnitus sufferers. I know that benzodiazepines usage is a contraindication to this surgery but I am starting to need them to cope with my tinnitus. My question is: Will HIFU be effective on a pharmacologically "clean" brain that has been on benzos in the past???

 

[dan]

@Lep , please tell us a bit about your story. No, benzos are not contraindication for this as far as I'm aware.

 

[Lep]

I'm sure I've read this information on a study about HIFU but I don't remember where...regarding my story,I had an acoustic trauma nine months ago (while listening to loud music) with first tinnitus onset in the right ear and a slight hearing loss at 4k hertz. They disappeared with some steroid injections but ten days later tinnitus returned after the first post-trauma exposition to noisy environment. Since then my tinnitus has had at least ten other spikes, now it's in my head with chronic headache, it seems it's increasing to infinite…what a nightmare.

 

[dan]

I'm sure I've read this information on a study about HIFU but I don't remember where...regarding my story,I had an acoustic trauma nine months ago (while listening to loud music) with first tinnitus onset in the right ear and a slight hearing loss at 4k hertz. They disappeared with some steroid injections but ten days later tinnitus returned after the first post-trauma exposition to noisy environment. Since then my tinnitus has had at least ten other spikes, now it's in my head with chronic headache, it seems it's increasing to infinite…what a nightmare.

I'm sorry to hear that. Well as you know, surgeries like this (hifu, dbs) are done only as a last resort.

 

[attheedgeofscience]

Other posters have already commented on this treatment. What follows therefore only reinforces and/or adds to what has already been stated. HIFU is a surgery performed by Professor Jeanmonod in a clinic in Switzerland. I sent him my details and medical evaluation about a month ago. For reasons I am not going to get into, I only had a follow-up conversation this week.

Here are the basics of HIFU (non-invasive neurosurgery) in relation to tinnitus:

1. A loss of auditory input to the brain must be established. Audiograms are a starting point for this. If audiograms suggest a loss of information input to the brain (due to hearing loss), then a full day evaluation with scans of the patient's brain can be done (cost = about CHF 2000,-). This does not include surgery.
2. If there is a loss of information input to the brain, then this will present itself as "hyper-activity" in a certain area of the brain. This hyper activity can be corrected surgically.
3. Due to the above, not everyone is a candidate for treatment. Surgery will only be done if all other treatment options fail. Patients must have had severe conditions for a year or more.

There is a waiting list. I will be getting a slot for evaluation sometime in Summer or early Fall. When/if I have something relevant to share, I will do so.

Unlike tinnitus, stem cells, and the inner ear, I know essentially nothing about the brain. I cannot help with questions, therefore.

Dr. Jeanmonod is someone who listens very carefully to the patient without interrupting them. He tries to get a full picture of the patient (both medically and "non-medically").

HIFU is not designed for tinnitus specifically. It is neurosurgery designed to help other neurological conditions.

That's all for now.

 

[dan]

The cost for consultation/evaluation, is 3200 Swiss Francs, exactly.

Also, we don't know how effective this procedure will be for tinnitus as of yet.

Also those people who have to "look for it to hear it" they are not candidates and those with little or no hearing loss, are poor candidates as of right now (trial stages). Hence the importance of an audiogram as stated in the above post.
Those with minor dips at 16,000 hz do not apply.

 

[jazz]

1. A loss of auditory input to the brain must be established. Audiograms are a starting point for this. If audiograms suggest a loss of information input to the brain (due to hearing loss), then a full day evaluation with scans of the patient's brain can be done (cost = about CHF 2000,-). This does not include surgery.
2. If there is a loss of information input to the brain, then this will present itself as "hyper-activity" in a certain area of the brain. This hyper activity can be corrected surgically.
3. Due to the above, not everyone is a candidate for treatment. Surgery will only be done if all other treatment options fail. Patients must have had severe conditions for a year or more.

What degree of hearing loss qualifies? Hearing loss often accompanies tinnitus, but the degree of hearing loss is not necessarily correlated with tinnitus severity. Instead, tinnitus severity is associated with abnormal brain wave activity. Below is a citation to one study that attempts to establish tinnitus by gamma oscillations:

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0007396

I imagine brain wave abnormalities would constitute a better objective measurement of severity than audiograms. Then, of course, there are people with normal audiograms who have severe tinnitus.

 

[t-man]

An audiogram is so subjective I'm surprised he even uses them.

 

[dan]

What degree of hearing loss qualifies? Hearing loss often accompanies tinnitus, but the degree of hearing loss is not necessarily correlated with tinnitus severity. Instead, tinnitus severity is associated with abnormal brain wave activity. Below is a citation to one study that attempts to establish tinnitus severity by gamma oscillations:

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0007396

I imagine brain wave abnormalities would constitute a better objective measurement of severity than audiograms. Then, of course, there are people with normal audiograms who have severe tinnitus.

I can answer that question for you as I understand it.
You have to have to be diagnosed by an ENT as to having hearing loss - I assume this is anything over 30dB loss, and it has to be in the approximate area of your tinnitus, ie, 8khz tinnitus with hearing loss around 8khz.
If the doctor believes from your story of how you got tinnitus and your ENT diagnosis and/or psychologist evaluation and/or medical history and/or medication history, and your chronicity and/or resistance to all possible therapies (TRT/counceling/medications) then he will invite you to do a quantitative EEG, where he will further evaluate you in person. It is a last resort solution. Its not like having corrective laser eye surgery.

 

[jazz]

An audiogram is so subjective I'm surprised he even uses them.

Well, audiograms are objective, but they are not predictive of tinnitus severity. Brainwaves are. When your brain is buzzing, you are having increased abnormal oscillations. These oscillations are measurable and do indicate either loudness, annoyance, or both.

Audiograms are just a measurement of hearing loss, and, some would argue, miss a lot of damage to the cochlea.