HIFU (High-Intensity Focused Ultrasound) Surgery

Good question! Lucky my hiperacusys is gone down in January after using a drug (Levetiracetam + Clonazepam) that i can't advice to use because i'm not a doctor and also my neurologist are looking for others similar experiences. I had suffered of hiperacusys for 18 month and when i must done an MRI to check my neck or other, the personnel of various clinic give me always 2 sponge in order to don't drive me crazy under the mri machine.
I still haven't a date for the surgery because my "bank account" don't cover the 36.000 chf required... then i must work a lot... hoping after the summer...to reach the goal!
Best wishes

 

Viking was, but it is same equipment cap on head with sensors on skin and computer softwere

 

@Viking
Love reading your comments buddy, so full of information!

 

Can someone please give me De Ridders email address? Id greatly appreciate it thanks

 

I called Belgium to ask medical details about Jan Ost who will examine me so I can apply for insurance coverage, they want to have leading doctor CV.

And I was surprised when Catherine did told me that Jan Ost does not has ANY medical degree and he cant give me medical details.

When I asked when i come there on that consultation day and check up preliminary she told me that Jan Ost will do it, but he should make medical conclusion and write me papers, recommendations and... on the end what...

Clink has a doctor manager but he does not has to do anything with a tinnitus.

Who is he, side trained guy by a doctor who now works and apply therapy without any medical degree???

and Dirk De Ridder does not work there. Is this legal?

 

Hi guys and ladies,

I have my initial meeting with Dr Jeanmonod 30th of june. I`m at the stage in my life I really don`t care about much anymore ... what the hell means money when you can`t enjoy it. I worked for over a year in the Australian mines just to save money for this treatment. It is all I have but it seems I am more and more willing to go through with it. If Autifony has a cure well that`s perfect! And that will give all of us a relief when we need it ... as I look at it now I won`t feel sorry for the money I might spend on HIFU (that is if my case is treatable with good prospects). It is funny because my T has been at a lower less invasive point lately.(stopped drinking the little alcohol i was drinking before completely - few glasses of wine and beer a week) Still I hear it constantly though more silent in noisy environments. The only worry I have is this;

If I start taking RTG now and in 3 months I have to go under EEG - I assume it will alter my brain image. I would need to stop a few weeks before I guess. It is a question I should put to Dr Jeanmonod. I will keep you updated on his answer.

Best of luck to all of us

 

Well, why not just wait for the HIFU appointment? That may cure you, RTG will not. I woudn't take any. I don't, actually.

 

i think that Jeanmonod will reply that you don't need to stop all medications before the qEEG exam. When i was on Keppra + clonazepam in January he don't suggest that i must stop those medication. The single advice was this and i'm sure that you have an email with this advice: Please don't take coffee or tea. Bring your medication in or out original packages.

After the examinations you can take free your meds. If you have a deviation of Alfa Teta or Beta waves, the qEEG record it with or without medications because it is a pathological conditions.

Ask to Jeanmonod for it!

best wishes!

 

An old but important hopeful article: http://www.nytimes.com/2008/12/02/health/research/02prof.html?pagewanted=all&_r=0

Dr. Llinás is the best friend of Dr. Jeanmonod

 

for those who have 40 000 euro in pocket or much more, depending on number of treatments necessary...

 

It is not only a problem of money. My attention is focused on a certain facts. Tinnitus suffers show a deviation of the brain waves ok... but also the LOCATION at the origin of this aberrant/abnormal activity are know by 1999 and are the Brodmann area 41,42,22. This is the target of focused ultrasound treatment. Now my question to the world of scientist is this: why, considering that we know the target and cheminstry, why don't develope a drug with the potential of restabilization of this cortical areas?

in 2 words: by my study, seems that surgery is only the "extrema ratio" but some drugs (unknow) should work on this area. The target of tinnitus is clear know: Brodmann area 41,42, 22..... infact if i had money the target of FUS treatment was been the area 22!

 

If there was a guarantee I would gadly give that kind of money without even twitching. What is money if you're not happy...

 

some of us have problem to survive in this same gothenburg and some have 40 000 euro

 

It's not that easy to target specific areas without effecting other areas since the mechanisms of neurotransmitters is similar in the entire brain. You can probably make a drug that would work but that would mess up a lot of other things.

The tricky part is creating a drug that would only effect the areas of tinnitus but leave everything else in the body unharmed.

 

I don't accualy have 40 000 euro in the bank. But if there was a procedure that would guarantee at least a reduction by half of the tinnitus I would gladly take a loan, sell my car, do whatever it takes to raise that kind of money.

 

What you say is a fact other say is a lie and they claim it originate in ear or elsewhere, so it is know as fact that i accepted by international neurological community.

You claim there are clear but suggest it to your several neurologist in Italy and they will say it is not truth, same is in sweden. "tinnitus origin is unknown" until recently they quarrel about is it in ear or in brain.

 

We take in Sweden 120 000 Syrians + some somalia , pakistan and so on, and then what they hide , but i have friend in Migrationsverket is that these 100 000 syrian apply for family reunification and they all get houses, money , with a knowledge that Sweden has lower integration mark on imigrants, comparing Göteborg, Swedens live in sentrum, immigrant is suburbs, Anagared, or better Hamarkulen where 80% are unemployed and 50% dont know Swedish. All that is payed but when it comes to social welfare and medication and national insurance they are broke they cant send you nor will help you for Switzerland they will not even pay a flight so you go on check up there.

In SWEDEN everyone has more rights than Swedes, and I am planing to be beggar in Nordstan, and when i called police to ask for aprovment he was shocked that Swedish citizen is going to be bigger to collect money for operation.

 

Well now you are overreacting and spreading false information. Yes we do accept a lot of imigrants from Syria but it's not that many and all of them won't get permanent visas.

I know they will not pay anything for me to go to Switzerland but if one is willing to do whatever it takes then there is always a way. If you are willing to work two jobs (yes there is work that can be found if you're not picky), sell things you own that you don't really need, move to a cheaper appartment or if you are younger without family move back to your parents, save up some money and take the rest as a loan. There are ways. Money is not the problem. The problem is doing all that and the treatment not working.

 

There is no cure at the brain 2 clinic as far as I can see, There is jiggery pokery magnetic stimatulion that may or may not give some releif for the duration you are in the clinic - thats about it.

HIFU has had success in term of resolving a number of neurological condition - they need to develop and implement it further for tinnitus . If it resolves tinnitus and it appears like it can do, get govt and health authorities to roll it out, asap. Other example of a therapy that has promise, where is the expedited roll out and development.

Regarding the cost, if it works, it will be possible to bring down to a fraction of the initial cost, the economical benefits alone will vastly outweigh the one off cost of treatment. So its a potential win win situation.

 

Of course. It's new. If it really works then there will be a demand and more such clinics will be built wich will drive down the price. I suppose it will never be cheap but at least afordable for most. That is, if it works.

 

I feel that Gov would be very hesitant to give out this amount of money for a conditon so many people are suffering with. The reason I belief that it is SO expernsive at the moment is because there are only 2 of these machines in the whole world available. It is deffinately a topic I will discuss with Dr Jeanmonod. Imigain it being only 5000 dollars ... the waiting list wold run into 2000-20-30-40 etc ...

If proof comes this works every country should have one of these for cases where people are just on the verge of suicide ... and even than the waitng list would be massive.

Let`s pray he can give me least of a 50-60 percent improvement - or even more (kissing Gods feet) ... and I will be able to speak for all of us regarding this procedure and the effect of it...

 

The reasons its so expensive at present are many eg it may be offered by private clinics only at present so there is a profit motive which would not be the case if it was on the NHS for example where they will bring down the cost to govt, at no cost to the patient.
- I suspect there are more than 2 machines , they are using HIFU for various conditions already of course the initial costs of set up etc can be high. Think of it like the early days of MRI when very few hospitals had them, now there are hundreds if not thousands of machines.
- its a one off procedure, there are a range of conditions that require lifetime daily medication, some that cost tens of thousands pa so cost will not be an issue -- if its works.
- if it works its represents a cost save to society economically, and also personal well being and relieves the burden of suffering.

This is all putting the cart before the horse, first step is get to the point where its a proven methodology for tinnitus. Thats why govts need to evaluate and run with this, instead of sitting back and relaxing and being complacent. As they say this is a JDFI

 

Still, where is the proof for HIFU? Where is T-patient X that has been cured by HIFU?
All we know is that it's utterly overpriced. Just an appointment cost big money.. and in the end the prof. can easily tell you that your brainwave activity isn't significant enough to justify a procedure. Of course..

 

Isn't every disease pathological? And there are really no meds that can alter your brainwaves?

 

Yes, if you have a pessimistic view you could look at it like that ... but This forum is not created for the pessimistic maybe`s - we come here for the positive possibilities ...

@joejunior - I don`t remeber where I read there are only 2 of these available ... indeed, we should have more. I think there is another one in israel or it is manufactured there.

 

Well once upon a time there was only one clinic offering lasic surgery for your eyes and it was expensive as hell. Now there is about 5 of them only here in Gothenburg offering surgery at a price of about 1-2 months salary of the common worker. If the technology works then there will be a huge interest (accually for that reason it's a good thing that it can be used on a variety of conditions). The price of the machines is so high becouse they are designed one at a time for a special order and there is only two of them so far as you state.

Well, if the demand for machines rises so will the incentive to make the process of manufacturing them cheaper. This is the case with every new technology. You can go and buy 150" LED-TV's for 20 000 euro today, in 4-5 years....2 000 euro. That's how things go with technology. It's always expensive as f**k in the begginging.

MRI-machines, X-ray machines....the list could be made very long. They were all expensive once, and still are to some extent. But you can't find a hospital without them.

As I stated it will probably never be cheap but the price will be reasonable for most of us. Just like going to fix your eyes or having a nosejob done. All of these were once unobtainable for the working citzen but now it can be done. Sure some have to make some sacrifices and rearange their priorities a bit to save up that kind of money but it's not unobtainable.

Accually the 40 000 euro is not that unobtainable either. People buy houses here in my city for 4-5 times of that amount every day. So instead of buying a house you can get your tinnitus fixed. Or even better, don't buy that new Volvo that costs about 40 000 euro. Fix your tinnitus and drive an old Mazda or Hyundai or whatever for a few years instead.

The problem is that for people to make that kind of investment most of us need guarantees that it will work. We need that patient X that @NiNyu is talking about. And probably more then one.


The same principle goes for the technology of the machines them selves. Right now there is only certain types of ailments that can be treated and only certain types of tinnitus. In the comming years there might be an advancement in the technology of the HIFU-machines that makes the precision even better and so on.
That could make even more types of tinnitus treatable. We could find out more about certain types of tinnitus and realize that we can use this techonlogy to treat them after all, even though we now think that we can't. Or that instead of reducing the tinnitus by 50% in some people we can eradicate it completely in most of the cases. The sound that the machine produces might be able to lower (some with H had wories about this). The list goes on and on....

And who says that dr. Jeanmond is the best guy for the job. Maybe there is a genius doctor somewhere that just hasn't got his hands on one of these bad boys yet.

Stay positive people.

 

Nills you are awesome mate. Keep us informed, i pray, hope, this works for you bud. Eventually for all of us.

 

The Hifu Exablate seams to be installed on a quite a lot of sites. Besieds that there is also some clinical trials.
http://www.insightec.com/66661.html
Look at this tretments for Tremor. It is quite amazing
http://www.ctvnews.ca/health/health...brain-surgery-to-treat-hand-tremors-1.1211309

 

I had tryed all. I'm drug resistant!

 

Me too. You alse seem to be surgery resistant! Your mvd didn't give permanent results! Have you really wondered if a failed mvd resulted in your tinnitus persistance? You said the MRI shows no signs of the material used... How can HIFU surgery treat microvascular compression of the auditory nerve?