Deep Brain Stimulation (DBS) for Tinnitus

How is efficacy substantiated? With a control group in mind, I don't suppose they drill holes into people's heads just for make-believe, do they? Although there needs to be a control group, or it's not science.

 

They turn the stimulation off and on.

 

So what's the verdict on DBS again?

i have a bad memory. Isn't this the stuff that they insert into your brain? *Sigh* I really would prefer an injection, something like the Susan Shore device, and of course
pills.

DBS is not a game. One mistake and it's lights out or blindness...

 

I gave up before they could try every permutation of voltage and electrode stimulation pattern as the increasing tinnitus caused me deep depression.

What was surprising was the high level of pain I had post removal, as the cables from the stimulator to the electrodes were covered in scar tissue and any slight head movements caused excruciating pain. This lasted for over a month before it finally eased up.

 

@Fightthearmy, that is the control. Patients are asked to rate their tinnitus at different times, without knowing if it's switched on or off. When switched off, there is in effect no intervention, so it serves as a control for each patient.

 

Wow, it sounds devastating. Do you still have that level of tinnitus?

 

It's much worse now. I won't put a number on it as numbers are meaningless.

 

@Jammer, at what hospital did you have this procedure done?

 

San Francisco VA Medical Center.

 

I would do the surgery, honestly. I hope they will do some more clinical trials, preferably in Germany, so I can apply.

 

This concerns a case report that is published by the University of Maastricht about successful DBS intervention in a patient with severe tinnitus.

Effective treatment of refractory tinnitus by bilateral deep brain stimulation of the medial geniculate body of the thalamus: A case report (Devos et al., 2023)

Here's also a video of one of the researchers who is involved in this DBS study.

MHeNs study: Deep Brain Stimulation in...

In this video, neurologist and neurophysiologist Mark Janssen tells about his research to find a treatment for tinnitus patients by using Deep Brain Stimulation. He also explains how it is to be both a doctor and a patient and the benefits of being a clinician and a researcher.

 

What is the “tinnitus questionnaire”? I am familiar with TFI and THI. Is this something different?

Dr. Steven Cheung has done research in this field. He seems to be working on some sort of non-invasive stimulation. But I am not clear exactly what he is doing. Does anyone know what he is doing?

 

The main difference between those questionnaires is the focus on questions concerning tinnitus-related distress (TQ), tinnitus handicap severity (THI) & negative tinnitus impact (TFI).

You can find more info in this paper.

Are you talking about this article?

 

I've been in touch with Dr. Cheung on and off about this. His method is invasive (similar to above). Further trials were on hold due to COVID-19, but more recently (June), he told me that he received, in his words, "surprisingly mixed reviews" in response to his NIH grant application to continue this work and that "regrettably, there is now a very narrow path to attract NIH funding for this treatment approach."

 

Yes, that must be the article I was thinking of.

 

A news article on DBS from Holland:

Deep Brain Stimulation to Treat Tinnitus - Maastricht University

 

That's tough to hear especially since there was success with it. It's hard to imagine why the reviews would be mixed on something so promising I hope you stay in touch with him and can provide us with another update in the future.

 

I was a part of his clinical study and had the DBS implanted on June 26th, 2016. I spent a lot of effort working with the team at the SF VA and self-adjusting the stimulation via the protocol and never achieved relief; I believe that it actually made my tinnitus worse. My system was explanted 8 months later. I wish I had never read about their study on Tinnitus Talk.

I gave it a shot and it failed me, but I was told it helped others somewhat. I wanted to help myself and the US veterans that have tinnitus post service, but alas, it didn't work for me.

 

I'm sorry to hear it didn't work for you. If I'm understanding right, the tinnitus got worse after the surgery and didn't revert to how it was before, even after removing the device? It's an experimental surgery at this point but even so, it's still heartbreaking to hear of your experience.

I wonder if there have been any insights gained from looking into where these DBS probes should be located...

→ New Tinnitus Research Focused on Neural Networks Shows Promise for Precision Treatment

By the way, here's a very comprehensive (150+ pages) report I found on DBS for tinnitus. A good read if you are interested in this topic:

→ Exploring Deep Brain Stimulation as a Treatment for Tinnitus (PDF)

 

Didn't get better and only got worse.

 

I am so sorry.

 

Don't be sorry for me. I knew the risks more than most as a medical device engineer who was involved with the design of De Novo medical devices and clinical trials. Sucks to be worse, but I had hoped to advance a treatment option to help both injured vets and myself.

 

Yeah, I feel the same way about taking Accutane. I knew the potential of having some side effects but was ignorant in my thinking that they go away once you're off the medication. I also had no idea that chronic non-stop tinnitus was even a thing. Aaaand, here I am.

It's so cool that I get to talk to someone who was an engineer and a pioneer in all this stuff! I'm still very sorry that the turnout wasn't better for you. This ailment sucks, bad.

 

@Jammer, I'm surprised that your negative outcome wasn't reported on the results of the trial unless I missed something. I would think that this would be included. It makes me curious about these reports and if they sometimes omit information.

@SarahMLFlemmer, it is surprising how many products/drugs can trigger tinnitus. Now that I have it I am extra keen on checking any product/drug I take because I cannot afford to make it worse.

 

I don't know. Maybe because I didn't complete the trial.

 

A systematic review of DBS:

→ Deep Brain Stimulation for Primary Refractory Tinnitus: A Systematic Review