HIFU (High-Intensity Focused Ultrasound) Surgery
- Thread starter daedalus
- Start date
Member
I keep my fingers corssed for you. Hope you already got some realif just by know that it might be something out there working for you.
I am amazed with the spiritual depth of insight and understanding of these doctors. Truly baffled by what I am reading.
Here is a fragment of their `concept` page
Here is a fragment of their `concept` page
- The expectation of an improvement causes emotional tension, particularly when the symptom relief has been wished for intensively and for long time, and when there is a strong wish for the rekindling of different activities and capacities.
- A fear of symptom recurrence may develop during the first postoperative days in parallel with the joy about obtained improvements.
- The symptom relief liberates the mind, which can now get busy with, and disturbed by unresolved biographic issues and themes.
- The new symptom-free situation submerges the patients with fear due to loss of the long standing disease-related references.
- There rises a frustration activated by the time loss and the limitations brought by the disease.
- After years of chronic suffering, months up to years may be necessary till an emotional stability can be fully reinstated.
- The capacity to observe, particularly own concepts and emotions
- The acceptation of the past, of the personal situation and of the impermanence of all things (letting go)
- To take own responsibility for events to come, but without guilt or self-insufficiency feelings
- Trust, patience, self-confidence and "Ur- and Grundvertrauen"
- Mental adaptability, letting go of rigid representations
- Concentration on the "here and now", away from past dramas and future scenarios
- Seeing the self as multiple, with strengths and weaknesses, positive and negative emotions (e.g. fear and frustration but also trust and courage)
- The search for the "golden middle way", away from black/white and horror/paradise scenarios
So, they say your problems come mainly from neurovascular conflict (tinnitus, hearing loss, h/s) and that is what they treat? What about your past neurovascular decompression surgery? I did a different job? Or didn't succeed as it should? I mean they mainly treat neurovascular tinnitus, not acoustic trauma ones? And what about your case? Did they manage to tell what is causing your tinnitus?
It is all a blare to me, I don't understand what Loreta qEEG exam shows.
I will have to make another series of tests (I prefer them in Belgium, where there is less waiting time and less cost prohibitive) before i can make (with neurosurgeons) the best decision. It is not easy. There are several options: 1) neurovascular decompression on the right side is for the VII and VIII nerves. I already know, very difficult and lengthy rehabilitation, results not guaranteed. 2) Temporo insular implantation of an electrode via MRI focus guided that reaches the thalamus and blocks areas hyperactive. It is a risky surgery, because crossing the brain,some blood vessel may break with some risk of brain abscess. 3) The HIFU treatment (stereotassic ultrasound) with the ability to inactivate the overactive areas without going to open the skull and then without touching the source of the problem (this is only a hypothesis and needs to be confirmed by a series of tests). I'll have to make a series of neurological tests in the next months, including several CT and MRI to determine the best way possible targets. In any case, the TCD is widely confirmed.
Now, before spend a lot of money with poor results, i will do also some experiments with some drugs that are used in Parkinson disease like selegiline or pramipexole who act on on the thalamus blocking the aberrant signal.
I will update you as soon as I'll know better what to do.
All the best
Ivan
1MW
Member
- Nov 25, 2014
- 614
- Tinnitus Since
- 2008 but cured and relapsed from benzos
- Cause of Tinnitus
- ssnhl/benzos/unknown
My suggestion take sweep OAEs / ABR / hearing recruitment test to identify if the hearing loss is due
to cochlea damage or after cochlea.Statistics say cochlea damage is more frequent.
Also for ch HIFU i think is all for money and not actual treatment. Because ultrasounds are cheap this increased
cost seems to me exploiting a difficult situation and give 50-70% to say you after that you are 50-30%
that you have not seen improvement...
Have you seen actual real persons (not advertisers) that have been treated with this treatment?
Brain overactivity can be from chronic benzos use. benzos & noise are toxic for hearing.
Before that a dna test will reveal if a gene mutation causes you hereditary non syndromic hearing loss because hearing Loss is symmetric in both ears. If you identify some gene perhaps you will have a sign for the future of the condition and if some medication or nutrient can slow down the progress. A lower invasive treatment is transtympanic injection with a mix of corticosteroid+lidocaine this give relief about to 65% of people with T have you tried before (side effecs are transient slight dizziness/not closing tympanic membrane(1%)/otitis media ) ?
Don't believe my friend so easy ask and other doctors.
I hope best for you!
to cochlea damage or after cochlea.Statistics say cochlea damage is more frequent.
Also for ch HIFU i think is all for money and not actual treatment. Because ultrasounds are cheap this increased
cost seems to me exploiting a difficult situation and give 50-70% to say you after that you are 50-30%
that you have not seen improvement...
Have you seen actual real persons (not advertisers) that have been treated with this treatment?
Brain overactivity can be from chronic benzos use. benzos & noise are toxic for hearing.
Before that a dna test will reveal if a gene mutation causes you hereditary non syndromic hearing loss because hearing Loss is symmetric in both ears. If you identify some gene perhaps you will have a sign for the future of the condition and if some medication or nutrient can slow down the progress. A lower invasive treatment is transtympanic injection with a mix of corticosteroid+lidocaine this give relief about to 65% of people with T have you tried before (side effecs are transient slight dizziness/not closing tympanic membrane(1%)/otitis media ) ?
Don't believe my friend so easy ask and other doctors.
I hope best for you!
This is a very sad possibility because the surgeons in 2008 had used the SPONGOSTAN that is a reabsorbible material. In fact on various MRI scan during the time, this material is not visible!!! This is the worst thing that could have happened to me. Remember that mvd surgery must performed exclusively with TEFLON or IVALON and not SPONGOSTAN!!!!
hold on!
Best wishes
1MW
Member
- Nov 25, 2014
- 614
- Tinnitus Since
- 2008 but cured and relapsed from benzos
- Cause of Tinnitus
- ssnhl/benzos/unknown
ivan you must remember in 2-3 days of partial silence the last year what happened before these happy hours.
What you eat how many hours you slept if you smoked or not cigs everything to try reproduce the silence.
My suggestion before any surgery is to stop completely smoking i know it is very hard but improvement from stopping smoking comes after several weeks not in 3 or 4 days.
If you cut off smoking and benzos and you don't see any improvement after 3 months then you can say that
these are not the cause but iam sure that you will see difference.
Also you must remember what was the cause of initial T. It was a stressful event like university exams lack of sleep etc ?
What you eat how many hours you slept if you smoked or not cigs everything to try reproduce the silence.
My suggestion before any surgery is to stop completely smoking i know it is very hard but improvement from stopping smoking comes after several weeks not in 3 or 4 days.
If you cut off smoking and benzos and you don't see any improvement after 3 months then you can say that
these are not the cause but iam sure that you will see difference.
Also you must remember what was the cause of initial T. It was a stressful event like university exams lack of sleep etc ?
There are not reasons like food drink or smoke in improving/worsening of my tinnitus. It is defibitely due to nerve damage. When i developed tinnitus in 2006 i was living the most happy time of my life. I had a work, university studies, girlfriend, motorbike group... it is not related to stress or anxiety or others psycological causes.
Cut smoking is always good but don't (i repeat) made differences on my tinnitus. I haven't smoked for 18 months in the past 2007 without differences.
Smoking tibacco is the only way to "vent"!
Best regards
I see. So there is a possibility of surgery materials failure. This is why you've been much better after surgery and then you got much worse! Can you tell us (or via pm) where did you do the mvd and how much did it cots you please?
The mvd surgery have not a cost in italy. It is all covered by the national care system. The same for surgery out of italy exclusion for private clinic (hifu). The problem is how "surgeon hands" can choose and if they want risk it.
In my mind, writing some email with De Ridder i would go in Belgium and italy cover this type of surgery excluding cost of travel, food and others extras.
You must not go alone. My advice is always to travel with a parent or friend because the head surgery is serious.
Best wishes
Thank you for your advice. I haven't decided yet cause it is not clean what is the problem with my T.
I have sent an email to Dirk De Ridder 11 days ago but there is no reply yet. Is he in New Zealand or Belgium?
Mo_Mo
Member
- Dec 27, 2014
- 100
- Tinnitus Since
- 25/11/2014
- Cause of Tinnitus
- Unknown, Started A Week After A Cold
Last time I checked, he is a full time in new Zealand, but still works as a consultant in brai2n
- Aug 21, 2014
- 5,049
- Tinnitus Since
- 1999
- Cause of Tinnitus
- karma
The tireless and big man Dirk De Ridder:
Dear friend
If you decide to get treated I would go for the implantation, and would suggest to use a burst enabled technology. The reason is that thalamic cells are rhythmically bursting, and that burst stimulation is theoretically better suited to suppress this bursting in tinnitus. I specifically developed this burst stimulation, and it seems to work better on the auditory cortex than tonic stimulation.
In attachment you find some more information that you can share with Dr Jeanmonod.
Kind regards,
Dirk De Ridder
Dear friend
If you decide to get treated I would go for the implantation, and would suggest to use a burst enabled technology. The reason is that thalamic cells are rhythmically bursting, and that burst stimulation is theoretically better suited to suppress this bursting in tinnitus. I specifically developed this burst stimulation, and it seems to work better on the auditory cortex than tonic stimulation.
In attachment you find some more information that you can share with Dr Jeanmonod.
Kind regards,
Dirk De Ridder
They speak about it in this thread ... https://www.tinnitustalk.com/thread...ditory-cortex-implantation-for-tinnitus.8377/
seems like it uses the timeframe 5 years ! ... please just give a pill or zap the bloody thing out of the universe ... 5 years ...
FounderThe above case study actually states:They speak about it in this thread ... https://www.tinnitustalk.com/thread...ditory-cortex-implantation-for-tinnitus.8377/
seems like it uses the timeframe 5 years ! ... please just give a pill or zap the bloody thing out of the universe ... 5 years ...
It doesn't (at least the abstract doesn't) state how long it took for the person to start benefiting from the stimulation. I guess it might have been instant.
Someone please correct me if I read it wrong.
@Markku About the pure tone component of the T, things are clear:
"a patient who had a complete resolution of the pure tone component of his tinnitus by an auditory cortex implant"
and
" his pure tone tinnitus remains abolished after 5 years of stimulation"
About his noise-like component of T things are not clear to me.
First: "an auditory cortex implant, without any beneficial effect on the noise-like aspect of his tinnitus, even after changing the stimulation design to burst stimulation , which is known to treat noise-like tinnitus better than tonic stimulation" , so no effect on noise-like component after implant
then "After an initial successful treatment of his noise-like component with transcutaneus electrical nerve stimulation, a wire electrode is inserted subcutaneously and connected to his internal pulse generator"
then "after 5 years of stimulation (and) his noise-like tinnitus is improved by 50%, from 8/10 to 4/10"
..so I don't know what to understand about the noise-like component of T: was initially successfully treated after insertion of the wire electrod, (so 100%?), and after 5 years his noise-like T is (only ) improved by 5o %, so in those 5 years it got worse with time?
Did I understand correctly? I would also like correction if i misunderstood this intricated text.
"a patient who had a complete resolution of the pure tone component of his tinnitus by an auditory cortex implant"
and
" his pure tone tinnitus remains abolished after 5 years of stimulation"
About his noise-like component of T things are not clear to me.
First: "an auditory cortex implant, without any beneficial effect on the noise-like aspect of his tinnitus, even after changing the stimulation design to burst stimulation , which is known to treat noise-like tinnitus better than tonic stimulation" , so no effect on noise-like component after implant
then "After an initial successful treatment of his noise-like component with transcutaneus electrical nerve stimulation, a wire electrode is inserted subcutaneously and connected to his internal pulse generator"
then "after 5 years of stimulation (and) his noise-like tinnitus is improved by 50%, from 8/10 to 4/10"
..so I don't know what to understand about the noise-like component of T: was initially successfully treated after insertion of the wire electrod, (so 100%?), and after 5 years his noise-like T is (only ) improved by 5o %, so in those 5 years it got worse with time?
Did I understand correctly? I would also like correction if i misunderstood this intricated text.
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
this is about HIFU
I wonder all of you to be realistic... take in consideration:
- Jeanmononn is old and only one in world doing this
- Price of it is ca 30 000 euro, and there is no guarantee of cure or that tinnitus will not come back
- current crisis in world say that doctors will treat only rich and those with little light decease, we who are severe we are written to be for die-off
- How long time (in years, decades) will be needed that there may be open second clinic for treatment, how much for 3,4, or 5th
- how many patients will be on waiting lists and assume younger will have priority
- What country will be willing to do this... Canada and Northern half of Europe (Germany, UK, Scandinavia) are only social countries, other will still charge same price (like USA)
On the end HIFU is upcoming treatment for rich who can afford it and still does not guarantee success nor permanent cure.
HIFU is not probably one with highest and permanent chance to give best possible results of permanent cure, but people will still wait for pills that they CAN PAY, something for mass production and help... HIFU is for small number
I wonder all of you to be realistic... take in consideration:
- Jeanmononn is old and only one in world doing this
- Price of it is ca 30 000 euro, and there is no guarantee of cure or that tinnitus will not come back
- current crisis in world say that doctors will treat only rich and those with little light decease, we who are severe we are written to be for die-off
- How long time (in years, decades) will be needed that there may be open second clinic for treatment, how much for 3,4, or 5th
- how many patients will be on waiting lists and assume younger will have priority
- What country will be willing to do this... Canada and Northern half of Europe (Germany, UK, Scandinavia) are only social countries, other will still charge same price (like USA)
On the end HIFU is upcoming treatment for rich who can afford it and still does not guarantee success nor permanent cure.
HIFU is not probably one with highest and permanent chance to give best possible results of permanent cure, but people will still wait for pills that they CAN PAY, something for mass production and help... HIFU is for small number
Christian78
Member
- Dec 17, 2013
- 965
- Tinnitus Since
- (Sep 2013)
- Cause of Tinnitus
- progressive tinnitus, time of expiring in next 3-6 months
I spoke with @Viking and other friends about the price for consultation with dr Jeanmonond, price is 2200 CHF...
What I have noticed is that he has done qEEG and talked psychologically and had neurological examination. I did not see he has done some other examination with highly sophisticated devices.
Loreta qEEG in brain tinnitus Beligian clinic is 140 euro.
I do not understand. If we accept that Daniels price is reasonable, and it cost so much and it is MINIMAL s @dan say, so dr daniel does not earn severely on patients how come consultation with him cost 2200 euro, and in brain clinic same tests are ca with hearing test 300 euro.
Why is different? 2200 € or 300 € ? Can you tell me? (pointing out price we pay for only speaking with Daniel Jeanmonod? Is it possible he charges just to speak and get his opinion without grantee 10 times more than in other hospital and he claim to work on minimal price)
hpng
What I have noticed is that he has done qEEG and talked psychologically and had neurological examination. I did not see he has done some other examination with highly sophisticated devices.
Loreta qEEG in brain tinnitus Beligian clinic is 140 euro.
I do not understand. If we accept that Daniels price is reasonable, and it cost so much and it is MINIMAL s @dan say, so dr daniel does not earn severely on patients how come consultation with him cost 2200 euro, and in brain clinic same tests are ca with hearing test 300 euro.
Why is different? 2200 € or 300 € ? Can you tell me? (pointing out price we pay for only speaking with Daniel Jeanmonod? Is it possible he charges just to speak and get his opinion without grantee 10 times more than in other hospital and he claim to work on minimal price)
hpng
Mo_Mo
Member
- Dec 27, 2014
- 100
- Tinnitus Since
- 25/11/2014
- Cause of Tinnitus
- Unknown, Started A Week After A Cold
Dear Cristian,
Hopigg always all the best for you i want to clear 1 techincal point. The qEEG in Belgium is performed with 24 max 32 electrodes and show only a part of eventually overactive/hipoactive brain's activity. The Loreta qEEG is performed with 64 electrodes and after elaborated into a computer for 2 hours and show all possible and minimal alteration. The cost of instruments is different because the hardware is different. Some page "rewind" in this topic i had posted an article who show the generic qEEG (quantitative electro encephalography) and the differences between this 2 type of hardware. We can consider the qEEG a "classic" and Loreta qEEG the "advanced version". This dont discredit the brain2 clinic that in my opinion is one of the best in the world for personnel, price, waiting list and more others.
All the best
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