HIFU (High-Intensity Focused Ultrasound) Surgery

There aren't "stall". It is only a problem of money... if you watch on their homepage www.sonimodul.ch they have done more than 1000 steretassic treatments since 2013. The FUS treatments for tinnitus has benn started last year with an average success between 30% to 70% and they are waiting the follow up controls. The FUS (focused ultrasound) treatment give help a lot to suffers for certainly. I have no doubt of this. Specifically about Swiss they have treated 22 persons with a good rate of success and there are large possibilities that with the passing of the time, restabilization of abnormal brain waves give others benefit to suffers. Of course we are talking not of all tinnitus but only for tinnitus who have source/receive spots in the specific auditory cortex brodmann area 41,42,22. They don't do trial because they are a private structure and i can say for sure that they are most honest. For me, it is only an example, i haven't money for the treatment (1 to 3 treatments could be required to reach the terapeutic goal) they have proposed another not expensive but invasive treatment: the CLT (central lateral thalamotomy). the invasive thalamotomy is the same concept of non invasive thalamotomi (hifu). They will do a little cavity on my right side lobe and "send" always mri guided, a probe who burst the overactive medial thalamic cells. Of course there are more high risk of side effects, some could also be permanent and infact i'm doing all in my forces to go on the non invasive but the concept is the same. When i have posted the pdf document, i have done a "presentation".... stayng on topic, for a few type of tinnitus, some way for improvement are available. Unfortunately for us, the real problem is that the tinnitus is not considered a disease. I don't know if you understand what i want show. For example... if tinnitus was a "cancer", the world of research was in continuos evolutions.
I I know that there is no cure for cancer (and in fact is just one example), but one day there will be a cure (I hope). This will happen thanks to the mistakes made in the past with the wrong therapies. This thing does not happen for tinnitus because it is not considered a "black disease" and then we are in stall not with hifu but with all the reaserach about the tinnitus because is considered a simple symptom and many "doctors" speculate on it sending maskers or useless (is the my opinion based on experience) and expensive hearing aids. It is always the same topic... MONEY! We today "accuse" Jeanmonod of not offer a cure for free to the suffers, but it is a miracle that a sort of cure already exist! The real responsibles of this absurd situation are speculators such ATA or BTW and others who don't do exactly NOTHING! THEY ARE THE STALL! THEY DON'T DEDICATE 1 LINE ON THEIR WEBSITE TO THE RESEARCH ABOUT BRAIN! They raise fund for nothing by a lot of years. We can't "accuse" Jeanmonod. He have to pay taxes, Personnel, the structure.... he do a job and it's a job who really work for a lot of disease.
The culprit are others....
There are millions of other considerations that I wish I had the pleasure to share with you but unfortunately time is short and those sirens in the head prevents me to concentrate and write correctly. I apologize for that....but allow me for a moment being paranoid ....for some people it is convenient that there is no cure ...
Best wishes to all!

 

For those that wanted to know how many patients SoniModul (Prof. Jeanmonod) has treated with HIFU so far,

+100 patients (T patients might be included)

Source,
http://sonimodul.ch/archives/3771

Given that they opened their clinic in 2010 they have statistically treated ~1.66 patients per month. Wow - impressionante!

That could explain why ATEOS had been the only patient at the clinic on his appointment.
Or to say it in his words,

That sounds cute IMO.^^

~

Maybe they thought 'it's no big deal'.

AFAIK, he never had constant T. In an interview, on youtube, he stated that he used to get Menier's fits feeling vertigo, imbalance and fleeting T. So maybe even now he only gets occasional fleeting T fits.

 

So, you have decided to go for it one way or the other? It is a lot of money, I shall offer a donation if it helps. Perhaps others will too, though the non invasive surgery costs a lot to be covered easily. Insurance doesn't cover I guess...
About loosing frequencies for good with this procedure (won't be restored even if cure is found later) what is your opinion?

 

Dont tell me it's like 34.000 x3 =102.000 euros to a possible 30-70% reduction of T?

 

The whole process does not preclude the possibility of future treatments (about hearing loss for example), but raises the patient suffering from a terrible sufferences, with ablation of thousandths of a cubic millimeter of tissue medial thalamus that are hurting. There aren't others losses of frequencies. If in the future, there will be new treatments for the recovery of auditory frequency, the surgery will not interfere with them.

 

Not not... with one treatment you can reach from 30 to 70.......consider that medicine is not the maths... individual response must be considered. If one treatment work but the patient continue to suffer and want try other improvement, after 1 year he can perform another thermoablation but only if the qEEG is significantly altered.
The psychoemotional dimension must be considered and infact i'm in psychotherapy 2 for week!

Now i must go...excuse me...Good night (with a lot of rivotril...)

 

Ok, now how can anyone be sure of that? How can they be sure? Autifony is a brain drug. Other therapies may be brain dependent. Even hair cell regeneration would demand proper neural connections to the brain. Perhaps they answer a bit prematurely about this? It is a serious procedure, thalamotomy...

 

Skoupidis... we must be serious... autifony is a drug funded with 2,500 million of pounds... in the past for neramexane was funded with 50.000.000 of dollars.....

The same for me. THe entire week is for you if you are going for the procedure. For example, i i had money this was the program. Monday: full head shaving, MRI and TC. Wednsday intervention. Trustay MRI an clinical examination....friday clinical exit.... on your legs without limitations... GREAT!
Now i must go...i'm really tired

 

Oh, so the results may not be satisfactory. Perhaps they won't fry as much as they should the first time and may want another visit to do a better job.
I my mind this will not work. Poor people can not afford it, rich people do not want to waste their money on something that vague. Then of course it is a terrible condition...

I wish you all the luck and really hope you are correct about it and get cured. I really hope this works! And also to find the money to do the non invasive treatment, It would be preferable although tough to find the money.
After all, you are the first (from the forum) candidate who is tested positive to do the procedure.

Have a nice sleep

 

My dear friend. ...as you should know i'm going for invasive thalamotomy...i haven't much money...

Good night and pray for me

 

I'd much rather see this technology flourish for Parkinson's, Tremors, and inoperable brain tumors than tinnitus. This could possibly be a miracle for brain surgeries that can't be operable through the knife.

 

It is already used for this reason.. I think it should flourush for any type of condition because people suffer no matter what the condition. Seems even you as a sufferer still misunderstand how bad this condition is.

anyway i`m going to paste some info Dan posted last year ... which isn`t up to date anymote considering the fact that they have started the operations but it has some good info in it .. I kept the post as it was but corrected it here and there.

1) There have been NO tinnitus patients treated for tinnitus with the hifu technology to date.. (2014)
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. (2015)
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 (36000 Swiss Franc 2015)
9) Surgery time = 5-6 hours with 24hr stay in hospital for observation.

 

Encouraging info. The fact they haven't treated people specifically for tinnitus is a big plus: They may perfect it and reach 100% cure! Tinnitus free! that would be something....

The fact that hearing will not be affected is really nice, although I want to see real results to believe this one.

The neurogenic tinnitus is something that is caused lets say from acoustic trauma, microvascular compression, damaged hearing by drugs? So, it more or less covers the most of us? I don't quite get the psychogenic T, is that what ATEOS have and was regected?

So, nills, will you be the first to go through with it? Have you make an appointment for the scans?

 

Cant see cost being an issue if it proves successful. Cost will come down and the speed of the therapy will improve. Thats a given. On the NHS for example the treatment will be available to all at no cost to the patient. If it turns out to be a one off procedure with maybe a couple of follow up it represents a massive cost save to the economy and society. A win-win situation. However there is a big IF - it needs to be proven first.

Regarding acupuncture and other alternative treatments, if they have worked for you fine, however there are those who have neurogenic severe tinnitus for whom the alternative therapies ie all the therapies out there are useless.

 

Thus we need a clinical trial on that. Everything else is just a theory.

I found something interesting,

'Thalamotomy (1996 D. Jeanmonod, M. Magnin and A. Morel)

Tinnitus
A 50-100% relief was obtained in three of the six patients with T, with a complete relief in only one. These three patients suffered from a combination of T and neurogenic pain, one of them with the addition of hemifacial spasm. The three other patients with insufficient relief had either only T (two) or T plus neurogenic pain (one).

On the basis of electrophysiological and clinical results, we propose a unified concept for all positive symptoms centred on a self-perpetuating thalamic cell membrane hyperpolarization, similar to the one seen in slow-wave sleep.'

So a 50-50 chance of relief.

I wonder if that works for all cases/patients. If they were to ablate the tonotopic map (auditory cortex) they definitely would erase T IMO.

'First of all, the thalamocortical dysrhythmic (TCD) is a concept.
Our experience indicates clearly that surgery can provide symptom reduction. These therapeutic effects can however NOT take place if counterproductive mental dynamics contributes to the suffering and have not yet been addressed and solved by psychotherapeutic measures.

The experimental evidence arises that mental, especially emotional, activities can lead in the brain not only to a TCD but also to cell losses through different mechanisms. This strength of emotions has been demonstrated for years in impressive ways in different ethnological studies, showing that a belief can lead to body damages and even death.'

So if you have a psychogenic T you have more or less imaginary T. Prepare yourself for the loony bin.^^ And this kinda scares me! I wish I had the emotional strength to destroy my body through sheer willpower.

I find it rather shocking. They do advertise for T treatment with HIFU since 2015? But have not yet treated anybody exclusively for T ? Scary!

 

I'm going for this... still have not a date but it is confirmed that i have a minimum of 30% to obtain relief. For experience, for all disease, no one serious doctor say "i will cure you", the opposite... they advice me of a lot of side effects ...death included... because they must do this. When i have ask for the risk...the answer was more cold: "anytime...even the airplane go down"......
hope....hope...hope.....

anyway...talamotomy work a lot for tinnitus and pain and i have both and also facial spasm on right side! in Swiss they do serious

This was my date... unfortunately...at last moment... the italian government don't give fund me. They told me that i have had to pay and after they give me back the 80% of the full amount.......

then invasive.....

 

@Viking , I wish you could go for the actual HIFU treatment. The thalamotomy is high risk!

I still do not understand why Prof. Jeanmonod suggested a thalamotomy instead of HIFU. Unless there's no way that HIFU could work in your case. Money can't be the only reason here. If so, that would be very odd given that HIFU requires less personnel (no general anesthesia needed, shorter hospital stay etc) and being the easier procedure.

 

This is interesting. You get like 30.000 back from insurance? I wonder if that goes for other countries. Did you get assurance on that or just a statement? I guess you would provide the receipt of the procedure. What coverage do you get for invasive thalamotomy you chose to do?

 

it is not an insurance. The italian government (before euro crisis) provide to give fund to person who need of cure not available in italy if they haven't fund or a job. Now the rule is change.... I would have to pay the full amount and then they later I would have compensated for the 80%. So, thanks to the absurd laws of politicians thieves, people with more severe disease and no money or job, can easily die ....

now the discussion about the invasive treatment is long and complicated to explain... some doctors in swiss (and excuse me but i can't give the name) considering my extreme sufference, give me a chance with an invasive approach without guarantee. I have signed many disclaimers where I raise doctors from all liability and i'm aware of all the risks...permanetly disability and death included but believe in me my dear friend...my quality of life is 0. My day (if i'm lucky) is stay on a bed with sirens in the head and severe pain (violent migrain/headache) drug resistant even morphine, i don't take a coffee with a frient...no pizza..no cinema..nothing of nothing...is difficult for me to have a meet with a friend due to the extreme loud of tinnitus. I have lived "happy" with tinnitus and pain for 7 years...but by 2 years the situation is massive worsened and only an experiment can be done. For me is always better of suicide. I'm also subscribed to the association "Exit" always in Swiss for the assisted suicide. I have even tried to work to get money, but I did it. Lack of work in Italy, low wages were just a way to speed up my accentuating the suffering. I'havent only a tinnitus problem...i hope that you understand...now this procedure is being considered by the ethics committee for the European extreme cases. on the paper it is approved and now i must wait for a call.....
I play "all in". I did everything that was humanly possible to do. Now i'm in God's hands.
Best wishes

 

I keep wondering about your case, you had great relief in the past after mvd surgery. Now, your MRI shows that the material used for the surgery is gone, so perhaps microvascular pressure applies again and causes some or all of your tinnitus. New MRIs show mvc signs again. Why don't you go with that? Another mvd surgery I mean, properly done this time.
Mvd was suggested in your Swiss visit as one possible treatments, wasn't it?

 

Hi Dear;

excuse me for later reply:

The proposals were 3;

1) Double microvascular decompression on both side with 3 moths of distance between the 2 surgery. I don't want this approach because in the past, when i done it, it request a lot of time to recover your life with doubt results, and also a lot of risk, infact after mvs i had cfs leak and then another surgery was performed to repair and close better the skull.
I want to share to you some advice: mvd fot tinnitus is a controversal argument. Not always have happy end and not sudden or after many months. Infact, i was lucky, it had worked for 5 years only. Is the same for trigeminal neuralgia. In literatule there are millions of suffers who have received surgery for the decompression of the VII nerve (facial) with a full suppression or good relied sudden after the surgery but after 6 month or max 2 years tha pain and facial spasm come back even with the vessel decompressed from the nerve.... then the risk/benefits ratio is questionable.

2) Central lateral thalamotomy with a probe inside the deep brain who burn the overactive areas. I will awake during the entire procedure. They will give me only a sedative and gastric protection. I will must talk with the surgeons during the procedure. The surgeons do a little whole on the prefrontal lobe and insert the probe inside until reaching the central lateral medial thalamus. I will talk with them in real time about what i "hear". It is not necessary the general anesthesya because in nature, our brain, don't feel the pain. There are a good success rate between 30 to 70% of relief or possible full suppression. Risks:
Invasive CLT (central lateral thalamotomy):
risks for brain abscesses over the 5% (when the probe go inside can break some veins or artery)
speech problems 20% (infact i will awake to talk about some picture that they will show to me... a lemon... a home.. the sea... etc)
Vision problems 5%
Balance problems 30%
Severe problem of compromization of impairment and judgment permanently 1%
coma and death (due to brain abscesses) 1%

3) Non invasive (High intensity focused ultrasound) Central lateral thalamotomy with 1024 waves focused at 54 up to 60°. Most expensive (i haven't fund for it)
The risk between invasive and not invasive is big:
non invasive has only the 1% of risk of brain abscesses. No need hospitalization after treatment. No limitation. No Infections. Incisionless
the Hexablate 4000 obeys the most modern technlogical requirements to perform a safety and painless treatment. Before the application of the metal ring around the head, you will a receive a local anestesia on the head and the Hexablate is always water cooled and have a "cavitation detector" inside who provide to don't burn the skin. The temperature around the head is costantly of 16°. They start to apply a low temperature using 1024 ultrasonic waves and only when the integrity of the target is confirmed by the costant MR monitoring, they apply the final temperature of 60° always with 1024 waves. This is the future for a lot of surgery.

I think that i'm near to the "Day"

Best wishes

 

Hey Viking!!!
I wish you the best for this and I start praying for you now!!
When are you having the surgery? Will you let us know how it went??

 

Of course i will update you before and after (i hope)

All the best and many thanks ffor the prayrs

 

@Viking

Very best of luck. I hope you get 100% reduction. Fortune favours the brave

 

@Viking Wish you all the luck and pray for you ... it is a strange world where a treatment that is safe and with minimal side effects or risks costs so much more ... to say the least it is completely wrong. In a few hundred years from now people should look with disgust on these practices and capitalistic endeavors ... if not ... I would be very disappointed in the progress our species is making.

you will find your peace brother! ... keep the courage and best of wishes!

 

praying for you Viking!!! GOOD LUCK

 

Your patience has been tested for quite some time now my dear friend, you will have to wait some more. In the end you will be cured, even if it takes some more time. I hope you are going to be the first to be completely cured from tinnitus. Where will you do the surgery?

 

Here; http://www.neurochirurgie.usz.ch/Seiten/default.aspx

but there are also others doctors interested at this "particular" (better word is "detailed") intervention against those neurogenic tinnitus. I signed the papers on confidentiality, and to be fair at this time i do not divulge the names. They do scientific work and publish them. Probably I will be one of these. A case from the medical journal ......I laugh to keep from crying.

 

@Viking , I'm so sad that you don't get the funds to go for the HIFU treatment. To tell you the truth, I think your government is stupid not funding you! I think they want you to pay in advance from your own pocket 'cause they hope you won't survive the procedure. Thus they wouldn't have to pay back the 80%. It's a sad world.

That said, I send you my best wishes. I want a cure for you.

@nills , you are spot on captitalism has killed humanity. Medicine should be entirely excluded from captitalism! It's just sick that medicine is essentially just like any other business.

 

@nills is right! It is a politic issue. In this document, you can find over the various treatment option for brain disorders, the considerations about what the various government do about it....loosing precious time for researches and suffers. https://books.google.it/books?id=e1...ral lateral thalamotomy side effects&f=false