Deep Brain Stimulation (DBS) for Tinnitus

[dan]

This study will test the safety and effectiveness of deep brain stimulation (DBS) for patients with a big or very big problem with tinnitus (a sensation of noise in the head).

First received: November 13, 2013
Last updated: February 3, 2014
Last verified: February 2014

http://clinicaltrials.gov/ct2/show/NCT01988688

 

[dan]

J Neurosurg. 2013 Jan;118(1):192-4. doi: 10.3171/2012.9.JNS12594. Epub 2012 Oct 19.
A stroke of silence: tinnitus suppression following placement of a deep brain stimulation electrode with infarction in area LC.

Abstract
The authors report on a case of tinnitus suppression following deep brain stimulation (DBS) for Parkinson disease. A perioperative focal vascular injury to area LC, a locus of the caudate at the junction of the head and body of the caudate nucleus, is believed to be the neuroanatomical correlate. A 56-year-old woman underwent surgery for implantation of a DBS lead in the subthalamic nucleus to treat medically refractory motor symptoms. She had comorbid tinnitus localized to both ears. The lead trajectory was adjacent to area LC. Shortly after surgery, she reported tinnitus suppression in both ears. Postoperative MRI showed focal hyperintensity of area LC on T2-weighted images. At 18 months, tinnitus localized to the ipsilateral ear remained completely silenced, and tinnitus localized to the contralateral ear was substantially suppressed due to left area LC injury. To the authors' knowledge, this is the first report of a discrete injury to area LC that resulted in bilateral tinnitus suppression. Clinicians treating patients with DBS may wish to include auditory phantom assessment as part of the neurological evaluation.

 

[jazz]

If efficacious, this therapy won't be available for many years. Currently, a DBS pilot study for tinnitus is recruiting members. See this link.

The estimated completion date is March, 2019. If anyone is seriously considering this treatment for intractable, intrusive tinnitus, I'd contact the researchers at the link above.

 

[Lisa88]

I have met Dr. Steven Cheung who leads this study. A brilliant man.
Although intrusive, this research to me is the most hopeful to date.
Taking into account that the basal ganglia of the brain acts as a gating system for tinnitus. And has already worked on several Parkinson's patients to completely suppress their tinnitus.

 

[linearb]

I had some contact with the people doing this research and they implied that even if I wasn't in the area, they might be able to pay some/all associated travel costs.

Note, though -- this is a phase I trial. That means they really have no idea if it will work, or not. This procedure is used in other conditions, so there are a number of people out there walking around with these implants. But, this is experimental brain surgery, and is extremely risky for any number of reasons.

 

[Codaz]

A new PhD paper has been released for the treatment of tinnitus with Deep Brain Stimulation.

"Exploring deep brain stimulation as a treatment for tinnitus":

 

[spedgas]

I'm an operating room RN and participate weekly in DBS cases for Parkinson's. One of the surgeons I work with has seen occasional tinnitus reduction as an unintentional side effect of DBS treatment. This technology has come a long way since this thread was started. The equipment used has come a long way and the surgery is faster than it used to be. We've started taking CT scans in the operating room and matching it up with live action 3D brain tracking. My hospital even has a robot that helps with electrode placement.

In my opinion the things holding this back are that it still requires surgery to access the brain. We still need to drill a hole in your skull in order to place the electrodes and make a pocket elsewhere to place a generator. Once in the brain they need to have a target they believe will relieve the tinnitus.

This is absolutely brain surgery. The OR time, anesthesia costs, and equipment costs will be massive. It will be a tough sell to get insurance to pay for this.

Until DBS can be done reliably without being this invasive it won't be a viable treatment.

 

[ajc]

Deep Brain Stimulation Offers New Hope for Severe Tinnitus

Bilateral deep brain stimulation (DBS) of the caudate nucleus appears safe and effective for patients with severe refractory tinnitus, early research suggests.

Results of a small open-label study showed a 60% to 80% response rate for efficacy outcomes.

In addition, surgery-related and stimulation-related adverse events (AEs) were transient and expected.

Dr Steven Cheung

"For scientists, this is very exciting, and it represents a new biology," lead author Steven W. Cheung, MD, professor in the Department of Otolaryngology – Head and Neck Surgery, University of California, San Francisco, told Medscape Medical News.

Full text study article:
Phase I trial of caudate deep brain stimulation for treatment-resistant tinnitus

 

[Lynny]

He talked about this as well. Looks promising.

 

[all to gain]

Deep Brain Stimulation Offers New Hope for Severe Tinnitus

Bilateral deep brain stimulation (DBS) of the caudate nucleus appears safe and effective for patients with severe refractory tinnitus, early research suggests.

Results of a small open-label study showed a 60% to 80% response rate for efficacy outcomes.

In addition, surgery-related and stimulation-related adverse events (AEs) were transient and expected.

View attachment 32012
Dr Steven Cheung

"For scientists, this is very exciting, and it represents a new biology," lead author Steven W. Cheung, MD, professor in the Department of Otolaryngology – Head and Neck Surgery, University of California, San Francisco, told Medscape Medical News.

Full text study article:
Phase I trial of caudate deep brain stimulation for treatment-resistant tinnitus

It does sound promising. Years away from hitting the operating table though. Will be very expensive, too.

I would be a guinea pig for this, but I would be disqualified immediately due to anxiety etc.

I saw one of the participants had a lawn mower and table saw sound to his tinnitus.

 

[JohnAdams]

No way this works.

 

[all to gain]

No way this works.

Why do you say that?

 

[Daniel Lion]

No way this works.

It works.

It's insanely invasive... it's when you're super chronic and basically going for a mild lobotomy... if it works, and I think 60 to 80 percent are not the most reassuring figures, you may feel a lot better.

There is one bloke on this forum who had it done as I recall and said he'd do it again. If the shit hits the fan really bad, it's an option. @spedgas explained the procedure extensively. Last resort, but glad they are researching it, they are getting in and meddling with the brain and brain stem and learning a whole lot.

 

[JohnAdams]

Why do you say that?

I thought I changed my comment.

 

[all to gain]

There is one bloke on this forum who had it done as I recall and said he'd do it again.

How much did it help the bloke?

So it doesn't eradicate tinnitus, it just lessens it?

I just saw "has seen occasional tinnitus reduction" in spedgas' post.

 

[AVIYT]

My tinnitus spiked for no apparent reason this morning. I couldn't fall sleep for 3-4 hours as it kept getting noticeably worse. It still remains very loud, very severe. No clue why.

Even before the spike, I haven't had a single day of relief since this has all started.

I'd go for this treatment. If it helps reduce tinnitus, why not. I'll take my chances. When you're facing the end of the barrel anyways, you have little to lose.

 

[Sevv]

As far as I've read, DBS usually doesnt completely remove the motor symptoms of parkinson's either. It's usually a 40-60% improvement. So a 60-80% improvement for tinnitus is similar. We're one to two decades away to precisely silence each hyperactive cell in the brain to reduce tinnitus by 100%. We'll get there when Neuralink's method has been perfected.

 

[Sevv]

Ah yeah, I read about this a couple months ago. https://sonimodul.ch/home/parkinson/
It's essentially a precision method to fry parts of the brain with ultrasound that have become hyperactive and cause parkinson's. The result is about equal to DBS, but far less invasive. The downside is that the tissue in the brain is lost. DBS on the other side corrects the abnormal behaviour.

In theory maybe we can a two-step process in the future that hopefully works for tinnitus too:
1. fry the faulty parts
2. use some medicine to regrow new neurons. Check this out: https://www.fromthegrapevine.com/videos/health/there-drug-can-actually-reverse-brain-damage

Edit: pretty interesting read actually: https://sonimodul.ch/home/concept/

 

[Daniel Lion]

How much did it help the bloke?

So it doesn't eradicate tinnitus, it just lessens it?

I just saw "has seen occasional tinnitus reduction" in spedgas' post.

As I recall it helped him a lot.

This is a last resort procedure, in my darkest hours I was very open to it. If my tinnitus went back up to a constant 10, this is the procedure.

I consider it a lobotomy in laymen's terms. This is an operation on the brain and brain stem. That would qualify as invasive. They have been doing this in California for some years I believe and if you check clinical trials, I bet they are still recruiting. Brave people have undergone this surgery and have given scientists a rare opportunity to actually get in there and meddle with the brain. It's fascinating, and nice to know it's there as a back up.

In the future they may be able to do this surgery with absolute precision and gain fantastic results. That's not an unrealistic vision.

 

[ChrisBoyMonkey]

As I recall it helped him a lot.

This is a last resort procedure, in my darkest hours I was very open to it. If my tinnitus went back up to a constant 10, this is the procedure.

I consider it a lobotomy in laymen's terms. This is an operation on the brain and brain stem. That would qualify as invasive. They have been doing this in California for some years I believe and if you check clinical trials, I bet they are still recruiting. Brave people have undergone this surgery and have given scientists a rare opportunity to actually get in there and meddle with the brain. It's fascinating, and nice to know it's there as a back up.

In the future they may be able to do this surgery with absolute precision and gain fantastic results. That's not an unrealistic vision.

UCSF does them, I know they recently finished one and the results should be published on a journal soon.

 

[Daniel Lion]

UCSF does them, I know they recently finished one and the results should be published on a journal soon.

You are most correct. UCSF, fascinating and cutting edge research... I think this may be one of the ways to help chronic sufferers... fingers crossed for good luck.

Take care CBM.

 

[Christiaan]

Clinical Trial DBS in Maastricht, the Netherlands (2020)

The Maastricht University Medical Center will start a trial this year (December, 2020) specifically for patients with tinnitus, using DBS as a means of intervention. I don't know how different their study would be vis-à-vis other DBS studies (they want to modulate the medial geniculate body of the thalamus), but it sounds like their main aim is very ambitious to say the least: ''Based on preclinical studies and human case studies, the investigators expect that DBS of the central auditory pathway will inhibit tinnitus perception and distress caused by this phantom sensation''

Here's the link: https://clinicaltrials.gov/ct2/show/NCT03976908

Is there anybody who would consider this? Personally, I'm trying to wait for FX-322 and Thanos' RL-81. But if I reach the point of complete agony, I would consider this

 

[UHPTS]

Is there anybody who would consider this? Personally, I would only consider this invasive procedure if FX-322 and Thanos' RL-81 are inadequate in reducing my tinnitus.

I would also include XEN-496 (slightly improved Trobalt) which might get on the market soon. It has got Fast Track from FDA and they should be starting phase 3. And even more potent XEN-1101, which is a bit like RL-81 (a bit less potent perhaps), currently in phase 2...

 

[Christiaan]

I would also include XEN-496 (slightly improved Trobalt) which might get on the market soon. It has got Fast Track from FDA and they should be starting phase 3. And even more potent XEN-1101, which is a bit like RL-81 (a bit less potent perhaps), currently in phase 2...

That's great news. Thanks! I do hope they checked it for other effects like visual snow, because some of us already have that and we would not want to make it worse.

 

[ASilverLight]

Clinical Trial DBS in Maastricht, the Netherlands (2020)

The Maastricht University Medical Center will start a trial this year (December, 2020) specifically for patients with tinnitus, using DBS as a means of intervention. I don't know how different their study would be vis-à-vis other DBS studies (they want to modulate the medial geniculate body of the thalamus), but it sounds like their main aim is very ambitious to say the least: ''Based on preclinical studies and human case studies, the investigators expect that DBS of the central auditory pathway will inhibit tinnitus perception and distress caused by this phantom sensation''

Here's the link: https://clinicaltrials.gov/ct2/show/NCT03976908

Is there anybody who would consider this? Personally, I'm trying to wait for FX-322 and Thanos' RL-81. But if I reach the point of complete agony, I would consider this

I knew Maastricht was researching tinnitus, but I didn't know they were so far along already. I'm very tempted to join actually, since if needed I would have a place to stay at in Maastricht... assuming that's where the trial will be.

I'm pretty desperate to just get any relief. At this point all I want is some stability on my tones, and for them to reach a quiet room stage. I'm not even asking for more than that.

 

[UHPTS]

That's great news. Thanks! I do hope they checked it for other effects like visual snow, because some of us already have that and we would not want to make it worse.

Actually looks like XEN-469 is Trobalt. The only thing that changed is the way it is administred so that children could use it... XEN-1101 should be free of the terrible side effects.

Interesting thing is that when they talk about side effects they never mention visual snow particularly.

 

[FGG]

Interesting thing is that when they talk about side effects they never mention visual snow particularly.

I get the impression with VS that if you already have it, these things are riskier as far as a worsening. VS is not common in the general population.

 

[Christiaan]

I knew Maastricht was researching tinnitus, but I didn't know they were so far along already. I'm very tempted to join actually, since if needed I would have a place to stay at in Maastricht... assuming that's where the trial will be.

I'm pretty desperate to just get any relief. At this point all I want is some stability on my tones, and for them to reach a quiet room stage. I'm not even asking for more than that.

Is it perhaps better to wait for the Astellas trial for FX-322? That is assuming you have hearing loss in the high frequency range. Astellas might start the trial in Europe at the end of this year or next year & seems way less riskier than the DBS intervention.

 

[ASilverLight]

Is it perhaps better to wait for the Astellas trial for FX-322? That is assuming you have hearing loss in the high frequency range. Astellas might start the trial in Europe at the end of this year or next year & seems way less riskier than the DBS intervention.

Perhaps. It's just hard to get tested for the higher frequencies. I'm glad that research is picking up, but it's still beyond me why there's so little interest in a lot of neurological conditions. I have a fairly rare partially neurological condition (completely unrelated to anything hearing/tinnitus) and the lack of resources, let alone treatments etc is just sad.

 

[Christiaan]

Perhaps. It's just hard to get tested for the higher frequencies. I'm glad that research is picking up, but it's still beyond me why there's so little interest in a lot of neurological conditions. I have a fairly rare partially neurological condition (completely unrelated to anything hearing/tinnitus) and the lack of resources, let alone treatments etc is just sad.

If you want, you could go to the local Pento audio centrum to get tested for an extended audiogram test (0 hz to 16 khz). It's covered by insurance.

Anyway, I know it's hard and we're in the same boat, especially for those with certain neurological qualities, as I prefer to say to people (I have ADHD and high functioning autism myself). We're just born in a world where neuroscience played a minor part until the 80's to explain certain phenomena. Just hold in there bud, it's going to be one tough ride, but we'll get there