HIFU (High-Intensity Focused Ultrasound) Surgery

#211
Nobel's for tinnitus and others related neurological distressing/incapaciting conditions are incoming for their dedication, support and research without many funds
Candidates:

1) Dirk De Ridder (implanted on himself and i have seen it, the first subdural rTMS stimulator and gone to a congress)
2) Daniel Jeanmonod (High Intensity Focused Ultrasound and its approach about Thalamocortical dysrhythmia for a lot of intractable conditions: seizure, cancer, tinnitus, neuropathic pain and more others)
3)Will Rosellini (Vagus Nerve Stimulation and Deep Brain Stimulation for tinnitus and seizure, Alezheimer, Parkinson,.... resetting of brain's signals)

then there will be other Nobel prizes for drugs therapies, derived from the endless research and publications of these three main pioneers of neuroscience ... their names are still unclear, because it does not belong to any association tinnitus-friendly, but they have made discoveries in randomly. in a world with millions of people suffering from this, unfortunately at times, debilitating condition, there are a maximum of maybe 10 people actually engaged in research and development. Not to mention the "profiteers misfortunes" ....uuuuuhhhh
About tinnitus...there are many research people who they think that the hair cells are not dead. They just suffered a brain injury and was to "turn them off" as a defense mechanism. Perhaps, in one day soon, some types of hearing loss will be treated, reactivating / reversing certain signals brainstem.
 
#212
attheedgeofscience said:
I agree. However, I had to make do with what was available to me (as I could not participate in AM-101 nor AUT-63, for instance). None of the therapies I underwent were specifically designed to combat tinnitus - so it was a "shot in dark", I guess you could say.

And knowing what I (and probably many others) have always felt inside of me is also reconfirmed by the premise of the on-going TINNET initiative (which was launched earlier this year). Part of their task is to study and document the heterogeneity of tinnitus. It is assesed that part of challenge with really tackling tinnitus has to do with:
  • the various underlying etiologies that can cause tinnitus
  • diagnosing tinnitus objectively (in order to know the cause - and hence the right treatment (assuming one is available in a future scenario)).
It is precisely the heterogeneous nature of tinnitus that is likely to cause a variation in the success rate of treatments. The TINNET initiative is not a small one. It is EU-wide, and you will perhaps appreciate(?) that for instance, people like prof. Deborah Hall is part of the team (and actually chair of one of the workgroups). [Prof. Hall is lead academic collaborator for AUT-63 for those who don't know...].

So like my own piece-by-piece investigative work, I can only imagine that the future will likewise be piece-by-piece in terms of assembling knowledge and understanding the efficacy of the various treatments as they become available. The old school mentality of "either it works or not" is precisely why progress has been so slow, if you ask me. I truly believe that tinnitus needs to be understood and tackled differently. And I am glad to see these delicate nuances appear in the medical landscape.

As for TinnitusTalk, it has - over the past year - undergone a huge transformation in terms of the quality of knowledge shared, information on the on-going clinical trials, along with the quality of input from a certain number of members. The total number of members (both active and passive) has also grown. And so has a number of important external contacts.

While "the cure" is not yet ready in tomorrow's mail, I somehow feel that a lot of progress has been made. I also sense - at least from some people - a shift in the willingness to do something about the "tinnitus problem". I once had a manager who - every now and then - would remind the team I was then indirectly a member of: "Are you part of the problem, or part of the solution?"

Personally, I prefer to play on the winning team.
Click to expand...

Stepping in on the conversation.

I thank @attheedgeofscience and others for documenting their journeys with alternative treatments. I for one, cannot afford to travel around the world and try experimental or unproven therapies. It gives me a sense of comfort when I can log on and read detailed accounts of user's experiences with such therapies. Even though I cannot afford them, I am happy to read how it went for someone else. "Voodoo" treatments do work for some. Whether they work or simply activate the placebo effect; any improvement is welcomed. Many effective Asian traditional medicine treatments are frowned upon in medicine because they have no synthetic counter-part that can be patented, licensed, and prescribed. Allopathic medicine ultimately fails in that it seeks blanket solutions for problems that have complex causes...depression, tinnitus, immune disorders, gastric disorders. An MD will prescribe you an anti-depressant because he knows it will make you feel better. But he knows it is not curing your depression. It is simply masking it.

It makes me happy to see that even those of us who have been stuck with this condition for many years still have a reasonably high level of enthusiasm and hope that better treatments are around the corner.

Now this is just my personal opinion, not based in any science or medical knowledge...I think that one of the reasons that we have been unable to treat tinnitus as of date is that there is so much variation in the disease itself. There is tinnitus caused by acoustic trauma, tinnitus caused by ear infections, periodic tinnitus, TMJ tinnitus, sound deprivation-related tinnitus, stress induced tinnitus...and so on. I think it is safe to say that the tinnitus experienced by one in a room with no sound is different than that experienced by someone who has acoustic trauma induced tinnitus.

A highly subjective disorder with many causes, likely variation in pathophysiology for each cause. Very difficult to study and treat.

I'm still hopeful though.
 
#213
@Viking
Dear Ivan, I think you greatly misunderstood what I said.
I did not mean that you "delegitimized" Dr.Jeanmonod. It was just a general expression that he is for real and his clinic did not shut down. I said it because I thought you were going to change your mind about going there.
Yes, I have gone to the clinic, I have posted it 1000 times here so not sure how you missed that ;-) but anyways, I am here to support you and share with you what I know, not to criticize you in any way my friend.
So I wish you all the best with your Jeanmonod experience and he would take you on as a patient. Please, let me know the results and what you have learned there, either here on in private. I suffer just like you.
Peace and love,
Dan
 
#214
Dear @dan :

please accept my apologies. it has been an error of language misinterpretation. Sorry for my fault. I have send to you a message where i try to explain better.
I hope you will understand. Thank you
Ivan
 
#218
Let's keep the HIFU thread on topic.


LineSeparator.png

Moderator added:
Agreed.
Some off-topic posts were moved and all future non-HIFU related posts in this thread will be deleted without warning.
 
#219
http://www.ncbi.nlm.nih.gov/pubmed/22140639

Surgical approaches to tinnitus treatment: A review and novel approaches.
Soleymani T1, Pieton D, Pezeshkian P, Miller P, Gorgulho AA, Pouratian N, De Salles AA.
Author information
Abstract
BACKGROUND:
Tinnitus, a profoundly widespread auditory disorder, is characterized by the perception of sound in the absence of external stimulation. The aim of this work is to review the various surgical treatment options for tinnitus, targeting the various disruption sites along the auditory pathway, as well as to indicate novel neuromodulatory techniques as a mode of tinnitus control.

METHODS:
A comprehensive analysis was conducted on published clinical and basic neuroscience research examining the pathophysiology and treatment options of tinnitus.

RESULTS:
Stereotactic radiosurgery methods and microvascular decompressions are indicated for tinnitus caused by underlying pathologies such as vestibular schwannomas or neurovascular conflicts of the vestibulocochlear nerve at the level of the brainstem. However, subsequent hearing loss and secondary tinnitus may occur. In patients with subjective tinnitus and concomitant sensorineural hearing loss, cochlear implantation is indicated. Surgical ablation of the cochlea, vestibulocochlear nerve, or dorsal cochlear nucleus, though previously suggested in earlier literature as viable treatment options for tinnitus, has been shown to be ineffective and contraindicated. Recently, emerging research has shown the neuromodulatory capacity of the somatosensory system at the level of the trigeminal nerve on the auditory pathway through its inputs at various nuclei in the central auditory pathway.

CONCLUSION:
Tinnitus remains to be a difficult disorder to treat despite the many surgical interventions aimed at eliminating the aberrant neuronal activity in the auditory system. A promising novel neuromodulatory approach using the trigeminal system to control such a bothersome and difficult-to-treat disorder deserves further investigation and controlled clinical trials.


Now the most important question: are we sure about the Stereotactic radiosurgery (HIFU) methods only available in Swiss?
 
#221
Viking said:
http://www.ncbi.nlm.nih.gov/pubmed/22140639

Surgical approaches to tinnitus treatment: A review and novel approaches.
Soleymani T1, Pieton D, Pezeshkian P, Miller P, Gorgulho AA, Pouratian N, De Salles AA.
Author information
Abstract
BACKGROUND:
Tinnitus, a profoundly widespread auditory disorder, is characterized by the perception of sound in the absence of external stimulation. The aim of this work is to review the various surgical treatment options for tinnitus, targeting the various disruption sites along the auditory pathway, as well as to indicate novel neuromodulatory techniques as a mode of tinnitus control.

METHODS:
A comprehensive analysis was conducted on published clinical and basic neuroscience research examining the pathophysiology and treatment options of tinnitus.

RESULTS:
Stereotactic radiosurgery methods and microvascular decompressions are indicated for tinnitus caused by underlying pathologies such as vestibular schwannomas or neurovascular conflicts of the vestibulocochlear nerve at the level of the brainstem. However, subsequent hearing loss and secondary tinnitus may occur. In patients with subjective tinnitus and concomitant sensorineural hearing loss, cochlear implantation is indicated. Surgical ablation of the cochlea, vestibulocochlear nerve, or dorsal cochlear nucleus, though previously suggested in earlier literature as viable treatment options for tinnitus, has been shown to be ineffective and contraindicated. Recently, emerging research has shown the neuromodulatory capacity of the somatosensory system at the level of the trigeminal nerve on the auditory pathway through its inputs at various nuclei in the central auditory pathway.

CONCLUSION:
Tinnitus remains to be a difficult disorder to treat despite the many surgical interventions aimed at eliminating the aberrant neuronal activity in the auditory system. A promising novel neuromodulatory approach using the trigeminal system to control such a bothersome and difficult-to-treat disorder deserves further investigation and controlled clinical trials.


Now the most important question: are we sure about the Stereotactic radiosurgery (HIFU) methods only available in Swiss?
Click to expand...

Ok I read your post and the journal a bit but the journal is from 2011... So HIFU has no effect at all on treating T?
 
#222
Robb said:
Ok I read your post and the journal a bit but the journal is from 2011... So HIFU has no effect at all on treating T?
Click to expand...
No because it is a complete diffrent appraoch ... HIFU focusses on the hypothalamus and ablates the overreactive parts that show up with the qEEG ...
 
#223
Robb said:
Ok I read your post and the journal a bit but the journal is from 2011... So HIFU has no effect at all on treating T?
Click to expand...
Misunderstunding! I apologize. I was talking about the new diagnostic methods, like MEG (elettro magnetic encefalography), and sLORETA or LORETA qEEG who provide help in the study including the generation of tinnitus in the brain, and then, consequently the possible "targets". They will be surgical or pharmacological thanks to these innovative diagnostic tools.
Best wishes
Ivan
 
#224
Viking said:
Misunderstunding! I apologize. I was talking about the new diagnostic methods, like MEG (elettro magnetic encefalography), and sLORETA or LORETA qEEG who provide help in the study including the generation of tinnitus in the brain, and then, consequently the possible "targets". They will be surgical or pharmacological thanks to these innovative diagnostic tools.
Best wishes
Ivan
Click to expand...

OK. @nills

HIFU is something which gives me HOPE
 
#226
Viking said:
It is a really hope!
Hold on!
if you are interested, send your clinical data to Dr. Jeanmonod NOW!
The waiting list is very long!
Click to expand...

Thx. I wait, I estimate i can live with this condition easily for say one or two more years..
If in the meanwhile mutebutton works and capacity goes up with HIFU also meaning decline in costs; great!
 
#232
Mo_Mo said:
@Viking is it treatable with hifu?
Click to expand...
Yes i have all requirements. Crhonic, due to auditory nerve damage and hearing loss, drugs resistant, quality of life 5%.... I hope to found money.... He dont give me the 100% of success rate, but between 50 and 70%. For me is like winning a lottery because i had live with tinnitus since 2006 with a lot of unuseful treatments and neurovascular decompression surgery,.....but since 2013 my tinnitus is dramatically worsenend due improper use of hearing aids. I also have developed trigeminal nevralgia and facial spasm drug resistant
 
#236
@Viking so happy to hear that you find something that have that big potential to give you your life back. Would it be big risks involved? Would that actially kill a small overactive part of your bran? How long time would you have to wait for the surgery?
 
#237
Ivan, best of luck to you! It is something that gives hope!

Have they successfully done it in other patients? What are the percentages of success, what are the risks and guarantees for this expensive procedure? (about 30.000 euros).

Did they say wat happens with your hearing loss? Did they find that it comes from microvascular compression? How did they do that?
Also: My guess is that the rest of your problems are not addressed with this surgery, only tinnitus?
 
#238
David S said:
@Viking so happy to hear that you find something that have that big potential to give you your life back. Would it be big risks involved? Would that actially kill a small overactive part of your bran? How long time would you have to wait for the surgery?
Click to expand...
Time between examination and surgery is a problem of money. If you have money, you can done surgery in 1 month! The risk of brain injury is minor of 1%. To be clear he dont say I CURE THE TINNITUS..... Go on www.sonimodul.ch and click on "The concept" ;)
 
#240
skoupidis said:
Ivan, best of luck to you! It is something that gives hope!

Have they successfully done it in other patients? What are the percentages of success, what are the risks and guarantees for this expensive procedure? (about 30.000 euros).

Did they say wat happens with your hearing loss? Did they find that it comes from microvascular compression? How did they do that?
Also: My guess is that the rest of your problems are not addressed with this surgery, only tinnitus?
Click to expand...
This surgery have a series of requirements that can be showed thank to Loreta qEEG. I have this requirements: bilateral hearing loss, neurovascular conflict with sure nerves overactivation, chronicity, drug resistant and not maskerable. The percentage of success with this requirements is of 50 to 70% of relief. The same target is for my trigeminal nevralgia and facial spasm because there is a multiple conflict on the Mri scan between the bloodvessel and nerves 7 and 8. The risk are minor of 1% see it on www.sonimodul.ch click on "The concept"

A big hug from Solothurn
 

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