Recruiting Pilot Study of Deep Brain Stimulation (DBS) in Area LC for Chronic Tinnitus

Tinnitus Talk submitted a new resource:

Pilot Study of Deep Brain Stimulation (DBS) in Area LC for Chronic Tinnitus - To test the safety and effectiveness of DBS for patients with intrusive tinnitus.

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I'm really into this treatment since I always thought the real cure will come with a surgery. Is there news to this?

 

They're still recruiting. I had a brief correspondence with them two months ago and they are willing to do the procedure on me. I'm not going to do it yet, or maybe ever.

If you're crazy enough to participate in a pilot study (one where they have only anecdotal evidence to support that invasive brain surgery MIGHT help us), then you can look up the study and shoot an email to Sarah Wang.

 

Steven Cheung talks about this process in depth in this video. What I found promising is he mentions the results of the 1st patient. The guy's T is completely silent 30% of the time and non bothersome for the rest. He starts talking about 4 minutes in and goes on for about a half hour. It's really good.

The Brain at War 2015: Session 1 - New...

 

@Vaba Does your t cycle or is it the same sound all the time?

 

This is a very interesting video, thanks. Who knows what will come of this.

 

are they still looking for people for this and if so how do you get ahold of them
thanks
Rick

 

@rid0871 yes they are still enrolling...email is sarah.wang@ucsf.edu

 

They were willing to do it on you after a 'brief correspondence'?

 

I totally lied to you guys and I'm not really sure why, lmao.What really happened was was that they were showing a lot of interest in recruiting me for the procedure. They asked for my audiogram and other tests, what my tinnitus sounds like and its severity, where I live and my age. I seemed like a good candidate based on my audiogram and other info, I guess, because they quickly responded and asked me to complete the TFI (tinnitus functional index). I didn't complete it because I got cold feet... I would assume the next step was accepting or denying me for the procedure.

 

@Vaba what does your tinnitus sound like?

 

I see, my point being, it sounds like they are kind of desperate for volunteers.

 

But isn't it weird that they cannot find almost any even if T sufferers are so willing to try any treatments? It sounds skeptical to me.

 

In my left ear, it's a "dirty" pure electrical tone ("EEEEE...") What I mean by "dirty" is I can't match the pitch, and sometimes the pitch changes for days and days at a time. It changes immediately and violently with jaw or neck movements (swallowing, chewing, or turning). This ear feels "full" and pressurized when I'm in a quiet environment.

My right ear is a thin metallic whistle, sort of like "aaaaEaaEaaaaaaEE..." it's hard to describe, but it changes between 2 or 3 pure tones 24/7. If I push on my right ear, hang upside down, or do the valsalva maneuver (all of which increase the pressure in the ear) the sound will always change to a quieter pure tone ("eeeee...")

Being a total shut in with no noise exposure apart from occasional headphone use, I have little to no hearing loss, and many jaw, muscular, and postural problems from lying around all day.

I definitely got that vibe when talking to them. This contributed to my cold feet.

It's not weird when you realize that the procedure that they're doing is DBS, which is an invasive brain surgery that is not without its risks, and is used primarily for cases of Parkinson's or other types of electrical hyperactivity in the brain, such as essential tremor. This is also a pilot study, which means that the people who are being operated upon are the first group of people ever to receive DBS for the off-label treatment of tinnitus, and this trial only exists because of anecdotal evidence that DBS can help tinnitus.

There were a few anecdotal reports from Parkinson's patients who also had tinnitus, (a very small group of people) that said that the DBS implant reduced or obliterated their pre-existing tinnitus. This group of 10 recruits for this pilot study are basically lab rats, the people running the study have no idea if it will work, as their hypothesis (that DBS can stop tinnitus) is based only upon anecdotal evidence, hence the word "pilot."

If what I'm trying to say still isn't clear, think about the pilot episode of a TV show. The cheaply made, hastily-thrown together low budget expo that the producers of the show make to convince a TV network that their show is worthy of being on the air. This study is basically the surgical equivalent to the pilot of a TV show.

I personally don't want them to open up my brain based on only scattered reports of success... I can't imagine many other people would be willing to put their brain under the knife, risking infection, for a procedure that might not even work.

 

This is definitely for people who have severe tinnitus. If you can still go throughout your day and hold a job, this isn't for you.

 

Being able to endure the day and keep a job doesn't define the severity of tinnitus. Some of us don't have the choice to not work.

 

Yea that's true, but I can imagine most know what I meant.

 

There's not enough info. Where is this taking place? Where is the website explaining this?

 

@Hotaru https://clinicaltrials.gov/ct2/show/NCT01988688

 

Very interesting as I have same experiences and it always puzzles me

https://www.tinnitustalk.com/thread...arily-decrease-my-tinnitus.14937/#post-187567

 

"Dear Dan,


Without having tried a prior therapy, we are currently not able to consider you for study enrollment. If you decide to try a less-invasive therapy first and are able provide documentation of its effect (or lack of effect) after the therapy, please feel free to contact me after and we can re-evaluate your candidacy. Thank you again for your interest in participating in our clinical trial.


Best,

Sarah"

 

in a really pragmatic way, it does. If I lobotomized you, you would not be able to keep your job; therefore, you are less disabled by your condition than someone who is lobotomized. I'm not downplaying the severity of your misery in any way.

As far as I know, they only wanted 10-20 people for this study; interesting that they are still recruiting. There are a lot of things I'd try to impact my tinnitus, but experimental brain surgery isn't one of them. Until the mechanism is understood, it seems quite possible that this could make your tinnitus worse -- indeed, there's at least one study I'm aware of where DBS implants for parkinson's led to the development of tinnitus.

Personally, I'd consider brain surgery for my tinnitus when they've done it to ~1,000 people already and have 5 and 10 year outcomes available in published articles.