Deep Brain Stimulation (DBS) for Tinnitus

[Christiaan]

Any luck in reaching out to her (Rianne)?

No, unfortunately, I haven't received a mail from her yet. Still waiting for a mail from AMC too.

 

[Gb3]

You guys realize a labotomy consists of taken part of your brain out. Supposedly they already do this treatment for people with Parkinson's.

 

[Michael01]

You guys realize a labotomy consists of taken part of your brain out. Supposedly they already do this treatment for people with Parkinson's.

At the stage I'm in I'd go for this treatment on my own dime if it was available here in Australia. Unfortunately it isn't and I'm having a hard time getting any treatment I find meaningful. At one stage I was very close to having myself committed as I lost my temper with an audiologist I was seeing. He phoned up the mental health people when I walked out of his office in disgust, saying he was worried about me when I said I was borderline suicidal at this point.

 

[Christiaan]

Hi everyone, it took a while but I finally came into contact with someone who was involved in the DBS study at the Academic Medical Center (AMC) in Amsterdam. Dr. Dijkstra is one of the leading specialists of this particular DBS trial (concerning Rianne Kok) and she was so kind as to provide me the case study paper that might give some insights for some of you here on Tinnitus Talk.

One thing worth noting in my correspondence with Dr. Dijkstra is that AMC is planning to conduct more DBS research in the future. That's at least some good news for those who are considering this kind of treatment.

Anyway, here's an evaluation + PDF document of the case study.

Effective deep brain stimulation of intractable tinnitus: A case study (Dijkstra et al., 2018)

''In this patient with severe intractable tinnitus, one year of vALIC-DBS resulted in major improvement of the tinnitus. Even though the tinnitus was still present, DBS enabled her to cope with the sound and fully direct her attention to normal daily life, which also greatly improved her mood. This suggests that vALIC-DBS primarily improved tinnitus-related distress and not merely depression, which is supported by the observation that temporarily DBS-discontinuation caused a primary relapse of tinnitus symptoms. Interestingly, improvement was first achieved with 4V-stimulation, which became more durable at 4.5V and was sustainable only at 5V, suggesting a dose-dependent stimulation effect.''

''As of yet, beneficial effects of DBS for tinnitus have only been reported as coincidental finding. For example, tinnitus was retrospectively assessed in 443 patients receiving subthalamic nucleus DBS for movement disorders, of which 61 patients reported having experienced tinnitus before DBS. During DBS, their mean THI score significantly decreased compared to pre-surgically (...) Accordingly, a pilot study of area LC-DBS is currently performed in ten tinnitus patients (trial NCT01988688). It has been proposed that tinnitus is caused by altered sensory input, such as auditory deprivation,which induces functional changes in a network of auditory and non-auditory structures. ''

''Nonauditory structures, such as the basal ganglia, have been proposed being involved in the gating and selecting of the tinnitus sound. Accordingly, the NAc shows structural and functional abnormalities in tinnitus patients compared to healthy controls, such as significant grey-matter decrease and tinnitus-evoked hyperactivity. We have previously demonstrated that vALIC-DBS for OCD is able to normalize NAc activity and excessive connectivity from the NAc. Based on these findings, we hypothesize that vALIC DBS improves tinnitus symptoms by restoring basal ganglia function, enabling healthy affective gating of the tinnitus percept. To the best of our knowledge, the current case study is the first to report effectiveness of vALIC-DBS for severe intractable tinnitus, casting hope for this intervention in other patients with intractable tinnitus.''

 

[ThomasC]

Hi everyone, it took a while but I finally came into contact with someone who was involved in the DBS study at the Academic Medical Center (AMC) in Amsterdam. Dr. Dijkstra is one of the leading specialists of this particular DBS trial (concerning Rianne Kok) and she was so kind as to provide me the case study paper that might give some insights for some of you here on Tinnitus Talk.

Interesting, but I don't think I have understood everything. Does it reduce distress, loudness or both?

 

[Christiaan]

Interesting, but I don't think I have understood everything. Does it reduce distress, loudness or both?

Bonjour @ThomasC. The researchers of this particular case study have not tested specifically for tinnitus loudness (e.g., Loudness Match with corresponding Numeric Rating Scale), but they have only used measurements that implicitly encapsulate the distressful impact that tinnitus has on our daily lives and routines (e.g. sleep, work, relations, memory, hearing, ability to focus), such as Tinnitus Handicap Inventory, Tinnitus Functional Index and Hamilton Depression Rating Scale.

If we draw some insights from this paper, we cannot state without any doubt that the tinnitus of the patient has been altered, but we can read that her emotional reaction to tinnitus has changed. You can read this part in the following text:

''Three weeks after the surgical procedure, we activated the DBS according to standard settings: 3.5V, 130Hz, and 90ms at the middle two contact points located in the vALIC. Due to lack of effect after initial activation, we increased the voltage three times successively with 0.5V, after which a stable improvement of tinnitus was achieved at 5V. After one year of chronic DBS, symptoms had improved with 63.2% on the TFI (score change: 7.4/2.72) compared to pre-surgically, 73.7% on the THI (score change: 76/20), and 76.2% on the HDRS (score change: 21/5). The patient reported that the tinnitus sound itself had not disappeared, but that she had become able to ignore the sound. This also greatly improved her mood and gave her the energy to engage with her children and husband again. After a few months of stable improvement, she was able to take a job and fully engage herself in the sports she used to like. She reported only mild forgetfulness as side effect of DBS.''

 

[hannah]

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.

I was actually selected for this trial. I decided after much thought not to go through with it as it really is so invasive. I am still waiting for them to publish their findings. I have a strong sense it would help. I just wasn't ready to undertake Brian surgery and have an implant for the rest of my life in my chest which would need to be replaced every 5 years or so.

The audiologist and neurosurgeon were both wonderful people and I hope the folks that did go through with the surgery has good results. It is radical and I am optimistic. Keep hope alive I say, 11 years and counting!

 

[Gb3]

I was actually selected for this trial. I decided after much thought not to go through with it as it really is so invasive. I am still waiting for them to publish their findings. I have a strong sense it would help. I just wasn't ready to undertake Brian surgery and have an implant for the rest of my life in my chest which would need to be replaced every 5 years or so.

The audiologist and neurosurgeon were both wonderful people and I hope the folks that did go through with the surgery has good results. It is radical and I am optimistic. Keep hope alive I say, 11 years and counting!

So they have to replace the unit in the chest every five years, not the brain electrode, right?

 

[Golly]

Hi Everyone:

A woman was successfully treated for depression with an implant in her brain. I wonder if this type of technology could be used to treat tinnitus? The so-called deep brain stimulator was apparently adapted from a device used to treat epilepsy (which itself may bear similarities to tinnitus in that it is characterized by excessive electrical signals in the brain).

[Arstechnica.com] Brain implant relieves patient's severe depression in "landmark" US study

-G

 

[2noist]

DBS is highly invasive although reversible. Maybe I'd still try it if this gets worse...

 

[Damocles]

Depression: Woman, 36, shows 'rapid improvement' with brain-zapping device | Daily Mail Online

Even if this was proven to work for tinnitus, it's last resort sh*t.

 

[Gb3]

They are looking into this as treatment. If your tinnitus isn't that bad, then you prolly wouldn't do it. I would do it if it was available.

 

[Gb3]

[Video] Intraoperative DBS - Interaction between patient and neurosurgeon during intraoperative caudate stimulation

 

[AfroSnowman]

Do the effects last?

 

[Ela Stefan]

They do. I know someone in the Maastricht trial, which will finish next year, and for whom it is going very well. Practically it has given them their life back, just as DBS in Parkinson's disease. I really hope they make it available soon after the trial has finished.

 

[Gb3]

They do. I know someone in the Maastricht trial, which will finish next year, and for whom it is going very well. Practically it has given them their life back, just as DBS in Parkinson's disease. I really hope they make it available soon after the trial has finished.

Has their tinnitus gone away or just a more manageable level?

 

[Ela Stefan]

Has their tinnitus gone away or just a more manageable level?

For the person I know, it went to a mild form that you will hear only in a quiet room.The stimulator is always on. Which for a debilitating form of tinnitus I would say is heaven on earth. Her tinnitus was only on one side so only that side was treated. The participants don't talk with each other so you wouldn't know about others.

I wonder if the tinnitus is bilateral, you will probably need 2 electrodes, one on each side? Or what if the tinnitus is all over your head at times? As mine is... I know they do EEG or /and fMRI to discover the most hyperactive parts and therefore the ones with the most potential to stop tinnitus before proceeding to surgery. And again the surgery doesn't cut or physically change parts of your brain.

I was looking in the Parkinson's disease groups and this is a very common procedure with a huge success rate. Yes sometimes it can have complications but the success rate is still huge.C an't understand why it's not used more or developed for tinnitus. Until cure medication or a neuromodulation kind of thing that will not touch your brain, just working from outside, this seems to me a very viable option. If something else comes up, you can remove the electrode and try out the new thing if you want to.

@Roadglide was a guy here on Tinnitus Talk who was in a DBS trial, in the United States I think, and he had success with it. He actually stopped visiting Tinnitus Talk. I remember him saying when they open your skull, the doctors actually can hear the tinnitus noise. Imagine that.

 

[Gb3]

For the person I know, it went to a mild form that you will hear only in a quiet room.The stimulator is always on. Which for a debilitating form of tinnitus I would say is heaven on earth. Her tinnitus was only on one side so only that side was treated. The participants don't talk with each other so you wouldn't know about others.

I wonder if the tinnitus is bilateral, you will probably need 2 electrodes, one on each side? Or what if the tinnitus is all over your head at times? As mine is... I know they do EEG or /and fMRI to discover the most hyperactive parts and therefore the ones with the most potential to stop tinnitus before proceeding to surgery. And again the surgery doesn't cut or physically change parts of your brain.

I was looking in the Parkinson's disease groups and this is a very common procedure with a huge success rate. Yes sometimes it can have complications but the success rate is still huge.C an't understand why it's not used more or developed for tinnitus. Until cure medication or a neuromodulation kind of thing that will not touch your brain, just working from outside, this seems to me a very viable option. If something else comes up, you can remove the electrode and try out the new thing if you want to.

@Roadglide was a guy here on Tinnitus Talk who was in a DBS trial, in the United States I think, and he had success with it. He actually stopped visiting Tinnitus Talk. I remember him saying when they open your skull, the doctors actually can hear the tinnitus noise. Imagine that.

Thanks for the update.

 

[Jdwg]

I remember him saying when they open your skull, the doctors actually can hear the tinnitus noise. Imagine that.

Is that true?

 

[Ela Stefan]

Is that true?

Check @Roadglide's postings. He said so... I tend to think it can be true, after all the brain is just a sort of electrical device.

 

[Mentos]

For the person I know, it went to a mild form that you will hear only in a quiet room.The stimulator is always on. Which for a debilitating form of tinnitus I would say is heaven on earth. Her tinnitus was only on one side so only that side was treated. The participants don't talk with each other so you wouldn't know about others.

I wonder if the tinnitus is bilateral, you will probably need 2 electrodes, one on each side? Or what if the tinnitus is all over your head at times? As mine is... I know they do EEG or /and fMRI to discover the most hyperactive parts and therefore the ones with the most potential to stop tinnitus before proceeding to surgery. And again the surgery doesn't cut or physically change parts of your brain.

I was looking in the Parkinson's disease groups and this is a very common procedure with a huge success rate. Yes sometimes it can have complications but the success rate is still huge.C an't understand why it's not used more or developed for tinnitus. Until cure medication or a neuromodulation kind of thing that will not touch your brain, just working from outside, this seems to me a very viable option. If something else comes up, you can remove the electrode and try out the new thing if you want to.

@Roadglide was a guy here on Tinnitus Talk who was in a DBS trial, in the United States I think, and he had success with it. He actually stopped visiting Tinnitus Talk. I remember him saying when they open your skull, the doctors actually can hear the tinnitus noise. Imagine that.

Is it this study?

https://clinicaltrials.gov/ct2/show/NCT03976908

I was mailing with the coordinator of this trial and she said they aim at stimulating Dorsal Cochlear Nucleus; same target as Susan Shore. It's promising to see someone benefitted from it, it may give credit to Susan Shore's device.

 

[Ela Stefan]

Is it this study?

https://clinicaltrials.gov/ct2/show/NCT03976908

I was mailing with the coordinator of this trial and she said they aim at stimulating Dorsal Cochlear Nucleus; same target as Susan Shore. It's promising to see someone benefitted from it, it may give credit to Susan Shore's device.

Yes it is.What is the connection between medial geniculate body of the thalamus (MGB), which this study chose as the most potential target to treat tinnitus with DBS and the DCN from Shore's study?

 

[ajc]

Is that true?

A surgeon cannot hear a patient's tinnitus if they open up their skull, no.

 

[Jdwg]

A surgeon cannot hear a patient's tinnitus if they open up their skull, no.

My assumption was that tinnitus purely existed within the nerves and emitted no actual sound, however, the prior comment went agaisnt that directly. In addition I read another comment stating that tinnitus was the brain making a noise which the ears could hear which again sort of implied a physical sound of sorts.

 

[Lane]

I remember him saying when they open your skull, the doctors actually can hear the tinnitus noise. Imagine that.

@Ela Stefan -- That's amazing! Thanks for sharing that tidbit.

 

[kingsfan]

I remember him saying when they open your skull, the doctors actually can hear the tinnitus noise. Imagine that.

Perhaps if the patient has objective rather than subjective tinnitus.

 

[spedgas]

A surgeon cannot hear a patient's tinnitus if they open up their skull, no.

I worked as an OR nurse for 19 years and scrubbed or circulated thousands of craniotomies. The brain makes no audible sounds once the skull flap is removed and the brain is exposed. The closest possibility is old DBS Parkinson's surgery. A decade ago we would place electrodes in the brain and watch and listen for brain activity to determine if the electrodes were placed correctly. Now the electrodes are placed in the OR using a portable CT machine with predetermined mapped targets.

 

[Ela Stefan]

I quote @Roadglide:

The brain surgery is invasive a metal frame is attached to your head, your scalp is cut and separated two holes or drilled into your skull. The frame is attached to your head and dye injected into your arm is for a scan to get trajectory to miss the arteries in your brain. Your frame is attached to the operating table leads or inserted into your brain the surgeons listen to your brain. In the area where the noise is the strongest it makes a static type noise. If you had no tinnitus it would be quiet in that area. Then they stimulate the area to see if they can modulate the noise in your head, making it louder or softer. Then the leads or permanently placed in your brain. The wires run under your scalp connected to a larger wire connected to your stimulator in your upper chest. This is all done while you are awake except for running wires through your neck to your chest to the stimulator. I was in surgery eight hours. They collected a lot of data. Spent one night in ICU, moved to a room next day and was released. Your face and around your eyes swell a little from the antibiotics they put in brain cavity running down between your face and bone structure.

The modulator is turned on several weeks after surgery, then you start trying different settings frequencies and voltage for optimal setting. Keep in mind this was to show the safety of the procedure as a treatment. I would think there would at some point be a part two to this study if all is well with info collected. I don't think study results have been published yet. I don't know if any other subjects had total reduction of tinnitus. Hopefully they can fine tune target areas and have a treatment for tinnitus. I would do it all over again if necessary.

 

[JRC1]

Ela, forgive me but I am confused. You share that you know someone in the trial, but when I click on the trial link, it says that the trial is not yet recruiting participants?

 

[Ela Stefan]

Ela, forgive me but I am confused. You share that you know someone in the trial, but when I click on the trial link, it says that the trial is not yet recruiting participants?

https://clinicaltrials.gov/ct2/show/NCT03976908

I forgive you... It started in 2020 and will end in 2022.