Deep Brain Stimulation (DBS) for Tinnitus

Oh yeah, I have ADHD too. A lot of people with the condition I have do. Music was (and still is) my biggest hyperfocus to be honest. I'm still mad I was so aware of the dangers of music so I took care yet I'm here (my tinnitus basically started after clogged ears and anxiety over that). Just goes to show even prevention doesn't stop this from happening.

I'm mostly used to tinnitus in general. I cam easily live with my baseline however annoying it is (it sounds like 3 chargers and the heating on next to my ears lol). It's the fluctuations that are the worst for me.

I'll check out that clinic though! Haven't heard of it.

 

ADHD gang here too lmao. I am certain that my tinnitus and hyperacusis originated from years of headphones usage -not even necessarily at extreme volumes but prolonged use.

 

I wouldn't use mine that much honestly. Usually just while going to school/work etc, and late at night for an hour or so. Usually maybe up to 3 hours a day at most and I also didn't use them every day.

I don't know how common it is to have moderate tinnitus from noise without any hyperacusis at all. I'm not ruling noise out, but my tinnitus did start after an earwax blockage and stress over that. Ears clean now so who knows what my real damage is.

 

I got tinnitus first, then developed hyperacusis about 5 years later. I remember going to the doctor when I first got tinnitus and her assuring me that it wasn't due to noise lmao...

 

My only wish is that people treat hearing issues such as hyperacusis and tinnitus seriously. People don’t realise that loud sound causes damage that makes you have a lower tolerance to noise which leads to issues such as hyperacusis and tinnitus. Noise damage accumulates.

We need better advocates because the current ones have done fuck all to raise the severity of these noise damage issues. I honestly wish governments started having better noise regulations that forces these concerts and clubs to lower the noise to a maximum of 85dB or lower and making these events to provide earplugs.

 

My biggest issue is developing other symptoms (even some that in no way can be blamed on noise damage) at the same time also, but who knows. Just really hope we can all get some relief sooner than later. I wanted to enjoy my twenties after the horror that was my teens lol, life said no.

Anyway, don't want to derail this topic further. Am very interested in this type of treatment though, I feel like things targeting the brain will be a big help if theyre safe enough.

 

Phase I trial of caudate deep brain stimulation for treatment-resistant tinnitus - Cheung, et al. (2019)

This study is already mentioned in the thread. However, I find it interesting to point out the similarities and differences with the Maastricht study and why DBS could be promising for even people with severe tinnitus.

In the Cheung study, they used electrodes to modulate a certain part that is not generally associated with auditory processing, namely the caudate nucleus. Despite that, the results are quite impressive (even if the study is quite small with 5 participants with severe T). 4/5 of the patients reported a significant reduction in their tinnitus. Here are the results from the study:

RESULTS
''The treatment effect size of caudate DBS for tinnitus was assessed by TFI [mean (SE), 23.3 (12.4)] and THI [30.8 (10.4)] scores, both of which were statistically significant (....). Based on clinically significant treatment response categorical analysis, there were 3 responders determined by TFI (≥ 13-point decrease) and 4 by THI (≥ 20-point decrease) scores''

Here's also a video of a patient who participated in the study:


Link of paper study: https://thejns.org/view/journals/j-neurosurg/aop/article-10.3171-2019.4.JNS19347.xml

However, the Maastricht study is based on the intervention of the Medial Geniculate Nucleus (MGN). The Dutch researchers at the Maastricht academical hospital have the impression that MGN could play a crucial role in the auditory pathway of the brain (and specifically its role in the manifestation of tinnitus), based on what they've found in previous studies on animals and human patients. Their intervention in MGN may very well lead to results that may diminish or inhibit tinnitus completely. If so, let's hope the researchers in Maastricht bet on the right horse

 

If I didn't have so many setbacks I'd totally try this out. Unfortunately the criteria are "stable tinnitus" for atleast 2 years. How is mine stable when I am getting exposed to random loud noise every couple months that causes a worsening? xD

 

Ok, that specific criterion mentions chronic tinnitus for more than 2 years, and stable tinnitus for more than 1 year. And the study starts in December. By that time you might be eligible to participate in this study, if your tinnitus wouldn't worsen in the meantime.

 

Mine gets worse and better by the minute, lol, still can't figure out how/why. It's definitely not noise though.

 

Had my last worsening (unless it turns out to be a long-term temporary spike) a month ago, so tough call. My tinnitus isn't debilitating yet, but I hear it all day. Can be masked though still fortunately.

 

This is raising lots of hope!

 

Definitely considering this once they're done with the study. A potential 60-80% reduction sounds really good... Although my job isn't the most fulfilling, I am actually quite content now that it pays well and will allow me to take on the surgery.

Waiting is advised anyway as we first need a drug to prevent noise trauma, as DBS surgery uses an MRI.

 

Hi @spedgas -- Very interesting information; thanks for posting this. -- I'm just going to toss something into the mix here (reflexology concepts), which I realize holds relatively little interest for most people. The reason being is that it really has no connection to mainstream science and/or medicine. It does however connect to stimulating the body in ways that are widely practiced in the fields of reflexology, acupuncture, massage, and various other similar modalities. I thought it would be worthwhile to post just in case there are others like myself who find these kinds of approaches to be effective--and fairly fascinating as well.

First a story: -- I was reading a reflexology book many years ago by a woman who was a practitioner for many years. One of the experiences she had with a patient was pretty remarkable, even for her. Her client had major heart issues, and was getting regular work on her feet, which involved massaging the nerve endings that corresponded to her heart. Since her heart was in so much stress, those nerve endings were extremely tender. So the progress was relatively slow, since enduring too much pain isn't really part of the reflexology experience. However, the practitioner one day said she felt it was important to go a little deeper. The client agreed.

So the session began, with it being a quite a challenge for the client as things progressed. And then out of the blue, the client screamed out in a way the practitioner had never heard before with any of her clients. She was of course quite startled, and wanted to know what had happened. The client shared that as her foot was being worked on, she experienced what felt like a bolt of lightening run from her foot to her heart; and then immediately subsided. Quite an experience for both of them! -- But here's the kicker: The client's heart problems literally disappeared. She no longer needed to see her conventional medicine practitioners, and as I recall, relatively little need to continue her reflexology sessions that were primarily to try to affect her heart condition.

Some thoughts on how this all relates to tinnitus and the topic of DBS: -- There are reflexology points on the hands and feet that connect directly to all other parts of the body, including the ears and the brain. When I had my initial traumatic onset of tinnitus, those points on my hands on feet were extremely tender, to the point where I could hardly touch them. But based on my fairly extensive understanding of reflexology, I knew I had to start working on them gently, and get as much nerve energy to my ears as possible.

In reflexology, the big toe corresponds to the head, and the inside of the big toe corresponds to the brain. (Most people have some pretty tender points in the big toe if they do a little exploring). Besides my ear points, I began massaging my big toes every day as well (and continue to do so). I do it in the mornings, as my tinnitus is usually the worst and most troublesome when I first get up. I find doing these relatively simple massaging techniques on my brain and ear reflexology points makes a big difference for me, perhaps mostly in my "perception" of tinnitus. I think that sending extra nerve energy lends a good amount of resilience to the nerves in my ears and brains, and helps them "calm down".

I think conventional medicine may actually have something to offer along these lines. I suspect they could come up with some kind of mechanism or device similar to a heart pacer or vagal tone stimulator to get some kind of steady deep brain stimulation without having to do the surgery. I haven't thought about it a lot, but it seems to me it would be possible. -- Anyway, this could put this in the FWIW, or perhaps "food for thought" category. I understand most people have little knowledge of reflexology, or of how it can transform many different ways energy (perhaps bioelectric energy) runs through our body, and how various kinds of subtle disrutions of energy flow can affect us in so many ways. But having done self-reflexology (and acupressure) for many years, I'm a big believer in how it can help for many situations. The most dramatic for me was what it was able to do for my chronic neck issues (@Mathew Gould), having restored a great deal of stability after a severe whiplash as a teenager.

Regarding reflexology, the area on the hand that corresponds to the ears is between the little finger and ring finger. If you massage the inside of the little finger and the immediately adjacent area of the ring finger, I'm guessing most people with tinnitus will likely find them quite tender. Work on them gently over a few days, and that tenderness will work itself out. I've read that some people actually notice an immediate difference in their tinnitus and/or the stress levels in their ears, though that wasn't the case for me. -- Reflexology can also be very effective for headaches. @Kriszti @Jack Straw

@Star64 @Jazzer @Daniel Lion @DebInAustralia @Cher2 @Michael Leigh

 

I can vouch that it helps (at least my) headaches and I use this instead of NSAIDs post tinnitus. Not sure why but if you need an anecdote, it does seem to help.

 

Just found this donation site on the World Wide Web:
https://www.doneeractie.nl/dbs-tinnitus/-1867


The story is about Rianne, who had very intrusive tinnitus (24/7) and decided to go for an experimental DBS operation in the Netherlands. She has reported that she now has her life back. She has set up this donation page to help gather funds and donate to the hospital staff that has helped her.

I'm trying to get in touch with her. Stay tuned.

 

Oh, they are actually doing this if you pay yourself? Fuck, I am saved! (I can probably pay it). Not for now, but when it gets too bad.

 

I asked if they accept international patients (I'm from Poland).

Unfortunately they only accept Dutch.

 

She says her tinnitus didn't change at all, just her feelings about it. So her psychological reaction changed with the DBS.

I also found a blog of her walking trip to Paris, but she also tells her story a bit on it: https://riannesreis-nl2.webnode.nl/resume/.
But the posts are from 2018. So she must have done the DBS before that. The comment below the fundraising is also 3 years old?

Anyway, she talks about the AMC, which is a hospital in Amsterdam. But I couldn't remember this hospital as one that does research into tinnitus. Only Maastricht and Groningen are doing that I believe (in the Netherlands). So I looked up for what AMC uses DBS for and they use it for movement disorders like Parkinson's and psychiatric disorders.

All this together makes me believe that they only used DBS for psychiatric purposes and not to decrease the volume/loudness of the tinnitus. I could be wrong of course, but she says herself that the tinnitus didn't change.

I also think Maastricht is really trying to stop/decrease tinnitus with their DBS trial.
They already, if I remember correctly, did a successful tinnitus removal with a trial in 2013-2015 with a CI. They planted a CI in 10 patients with 1 deaf ear and tinnitus in that same ear. It worked for all patients I believe. I must look up what they exactly did, but the trial was purely for the tinnitus, not to make them hear again.

So for the DBS I would wait for Maastricht, I think.

But if you really can't handle your tinnitus, this might be something to consider I guess. I have pretty severe tinnitus myself, only maskable in the shower. It would be nice to just fully not care about the tinnitus anymore.

However, if Maastricht is achieving a real volume decrease with their DBS trial, that would be something I prefer.

 

I don't know if she had paid for it, or if it has been covered by insurance. I am also wondering how much effect it had on her tinnitus. I am going to ask her about this by e-mail.

 

Thank you for finding that article @PauloZ. Just read the story. Yes, she mentions a different experience to T (''more space in her head for new stuff'' & ''feels happier''). She said that the tinnitus is still there, but she didn't mention anything about it having changed or not.

I'm wondering if DBS made the tinnitus different in that she could more easily live with it and/or as you said that it creates a better psychological resilience towards tinnitus. So I have mailed to her about her DBS experience + influence on tinnitus & I am about to mail the AMC about the study and which part of the brain they've modulated (if it is not classified that is, since it only is focused on one patient).

I also share your opinion that the people in Maastricht are up to something. I am still on the border of whether or not to apply for this study, as I really want to get rid of multi tonal loud tinnitus. However, from all types of studies up to this date, I would say that DBS has the best bet. The Cheung study is very illuminating that most patients with severe tinnitus (even those with 25/40 years of tinnitus) have experienced a significant decrease in tinnitus. There's even a patient (from the video) who told the assessor that she barely noticed her tinnitus at all. If that is not groundbreaking, I do not know what is. Only question remains how long the benefits of DBS modulation persists. The Cheung study took about 24 weeks and they noted that the improvements are constant, but what if we look at a study that goes on for years?

 

If I'm not mistaken, this study is currently in pre-phase 1 (read it somewhere). The criterion eligibility international patients may change in the next phase (which could be in 3-5 years). Don't know if you're willing to wait that long for DBS or other stuff, but if you could always apply for Dutch citizenship, you might make a chance. But you're more than welcome! We have a big Polish community in the Netherlands, I actually live in a neighbourhood in The Hague with more Polski skleps than typical Dutch stores. Some schools even offer Polish as an extracurricular activity (I could have chosen that subject during my time at a Roman-Catholic high school). BTW you would have a good reason to support one of the best football teams in the world (even though Poland is also a tough cookie)

 

You are doing some great research in contacting her and AMC. I'm pretty interested in how she is doing now.

The sentence that got me to believe she said the sound didnt change was this one: "Het is niet dat het geluid zozeer veranderd maar je gevoelsleven tov het geluid". Translated: "It's not that the sound changes so much, but your emotional respond to the sound."

Also in the 'bedankt (thank you)' part of her blog she says the following: " Ik kan weer gewoon denken 'wat een bak herrie heb ik in mijn hoofd maar ik ben toch blij en kan weer leven'!! Echt leven!!" Translated: "I'm able to think again: what a lot of noise in my head, but i'm happy en i'm able to live again!! Really live!!"

For the study in Maastricht they say you must have been treated there right? Their psychology therapie? And if that didn't help much you might be one of the six that can do the trial. To be honest i think they already have some patients on their mind already or maybe already picked them.

I have been to them because of my worsening, but we agreed i would find a psychology therapie more to my place because of covid and such. Maybe i should give them a call that i want to do it at their place anyway. The ENT said to me they were still in a very very early stage of it, and asked herself if it would be 'the' thing. Also looking at the risk of surgery and cost. I agree you shouldn't give everyone DBS right away. But if your tinnitus turns out be chronic and it interferes your life heavily, why not?

Put that thing in my brains already!

 

Are you talking about Maastricht? @Mentos

 

Yes, that's the mail I received:

Unfortunately our trial is not open for international participants. This is because one of the prerequisites to take part is that everyone should have gone through the standard tinnitus care as prescribed by the Dutch health organizations. This means a 12 week behavioral program which at the moment is only available in Dutch. Additionally all our out measures are in Dutch.

 

Thanks for your hospitality mate, apparently it's not only about citizenship but the language as well, and Dutch is not the easiest one to learn in half a year, pronunciation in particular is very 'harsh'.

 

So to clarify, @Christiaan and whoever else knowledgeable, is DBS a one time thing? You get the surgery, they do the electrical stimulation for whatever amount of time, and they remove it? By the word stimulation, is it just sending electricity to change the neural wiring or does the electricity fry that part of the brain?

 

Technically speaking, putting DBS electrodes in your brain is a one time thing. There are exceptions. I have read a story in the Cheung study of a patient who was very suicidal (not related to DBS BTW) and wanted the DBS device to be removed, and so they did.

However, I've read that the battery, that is accompanied with the electrodes and placed in the chest, needs to be replaced after three to six years max (depending on voltage usage). Luckily, I've read no stories about brain parts beings fried so far, so it is a matter how much voltage is deemed safe to stimulate a part of the brain.

The following quote is from the Smith study (2018) seems to give the idea that it is about changing neural wiring in the auditory pathway by disrupting the hyperactivity in certain brain regions:

''The rationale behind the effect of DBS on tinnitus is mainly based upon the finding that DBS mimics a lesioning effect, thus decreasing hyperactivity in the pathological brain regions. Since it is unlikely that DBS only inhibits neuronal activity, the theory that DBS disrupts pathological activity seems to be more plausible.''

Link:
https://webcache.googleusercontent....9.pdf+&cd=3&hl=nl&ct=clnk&gl=nl&client=safari

 

Alright, you did some good thorough research yourself @PauloZ. Grrr... you're right. Just saw in the inclusion criteria that you need to follow cognitive therapy there or the one in Hoensbroek:

''Evidence-based cognitive treatment in Hoensbroek (Cima et al., 2012) or a similar version of this treatment in the MUMC''

They can't be that rigid to stick to 6 people, I hope? I can imagine it's expensive for the hospital/insurance and all, but what if more people are willing to do this? It may crucially save their lives and the study will be made more reliable if you have more results from patients to compare with. Since I am on a calling spree, I am going to give Maastricht a call too about this

If nothing seems to work with your tinnitus, I hope they will allow you to partake in the study. It's hard enough living with this, let alone waiting for something for years on end.

 

@Christiaan

Any luck in reaching out to her (Rianne)?