Brai2n Tinnitus Clinic in Belgium

[Markku]

http://www.brai2n.com/

A year and a half waiting list. Seems very popular.

I'd be very interested to know if anyone has been to there and what was their experience?

I do know that Prof. D. De Ridder should be exceptional, as far as I know he has a very active role in Tinnitus Research Initiative and has published several studies. Top notch man.

If you've been to Brai2n, please tell us a little bit about it

EDIT / September, 2013: Read Daedalus' post below for the latest update on Brai2n.

 

[Tom58]

On another forum I remember reading some tinnitus sufferer actually flew from another country to that clinic.

Don't remember the details but he was very satisfied with the service he received. They tried different drugs, some neuromodulation et cetera, nothing made his tinnitus better or worse, but still he rated the experience worth it.

 

[daedalus]

Hello,

I am a patient at the BRAI2N tinnitus clinic and my dr is Dirk De Ridder. Altough they haven't found a way to alleviate my tinnitus, i must say at least they tried.

They tried the following medications:
-Rivotril
-Deanxit
-Cyclobenzeprine : An anti NMDA which relaxes the muscles of the jaw
-Naltrexone
-Zonegram
-Entacapon
-Wellbutrin

All these medications are supposed to affect the central nervous system. That's why the were prescribed. I know a lady from another forum who got cured by the combination deanxit + rivotril.

They also tried different neuromodulation techniques:

-rTMS: http://en.wikipedia.org/wiki/Transcranial_magnetic_stimulation
-tDCS: http://en.wikipedia.org/wiki/Transcranial_direct_current_stimulation
-TENS: http://en.wikipedia.org/wiki/Transcutaneous_electrical_nerve_stimulation

They have published papers about some of these treatment and they report limited success for a minority of patients. The clinic is also implied in the first trial of the vagus nerve stimulation. It's a small trial which will test a mere 10 patients. They told me that right now it is too early to make conclusions but one of their five implanted patients sees a slight amelioration.

 

[daedalus]

I just received an answer from Dirk De Ridder. The clinic has moved and is no more at the UZA. It is in St Augustinus clinic in the same city. They have a new team of physicians and De Ridder stays in touch with them and moves to there 2-3 times a year. And the prices have ramped up What a surprise.

And the website is in Dutch only which is not a good sign. The technicians are the same. They now have a whole team of physicians while at the UZA it was mainly Dirk De Ridder doing the work alone.

 

[Markku]

Thanks for the update, daedalus.

 

[daedalus]

Forgot to put the address: http://www.brai2n.com/

Since they have more physicians the waiting list must be shorter.

 

[Per]

Dirk De Ridder. With a name like that he should able to heal the world.

On a serious note it's good to see that someone is trying out there. Too bad it didn't help your T daedalus, thanks for sharing , appreciate that, and thanks to Markku for bringing it up. This is one of the great things about this forum, we sometime get authentic information from patients. Good stuff.

 

[Golly]

@daedalus;

I understand that you still suffer from tinnitus, but did you not enjoy any partial or temporary relief from any of the medications or procedures you describe?

-Golly

 

[daedalus]

Unfortunately nothing. Maybe a short diminishing of the t during a TMS session but frankly not sure if it wasn't simply the noise made by the coil that covered the t. I was scheduled for a neuronavigated TMS but the day i came to my appointment the computer piloting the robotic arm had been stolen !

I have heard a few patients left and right who have been relieved by the medication they got there or heard their t diminish after a TMS test. Two members of this forum who tested without improvement.

There is an interview of one of his patients who was implanted. : http://www.bbc.co.uk/radio/programmes/a-z/by/longing for silence/current

 

[Golly]

Unfortunately nothing. Maybe a short diminishing of the t during a TMS session but frankly not sure if it wasn't simply the noise made by the coil that covered the t. I was scheduled for a neuronavigated TMS but the day i came to my appointment the computer piloting the robotic arm had been stolen !

I have heard a few patients left and right who have been relieved by the medication they got there or heard their t diminish after a TMS test. Two members of this forum who tested without improvement.

There is an interview of one of his patients who was implanted. : http://www.bbc.co.uk/radio/programmes/a-z/by/longing for silence/current

@daedalus;

Your med list is long, but not exhaustive. I am surprised at the absence of Gabapentin and Pregabalin. Certainly disappointing that none of them did a thing for you.

I notice that you tried Cyclobenzprine. Do you believe there is a connection between your tinnitus and jaw muscle tension? When I am having a noisy day, my ears crackle and pop and my face becomes sore as the day wears on: particularly so directly in front of my ears. I tried Cyclobenzaprine at 5mg, but this did little for me. I often wonder, however, if higher doses would have done something. There is a paper suggesting that 30mg of Cyclobenzaprine alleviates tinnitus in some:

http://www.ncbi.nlm.nih.gov/pubmed/22302057

-Golly

 

[daedalus]

I tend to clench my jaws. My tinnitus is somatic so if i clench my jaws i hear my tinnitus a bit louder. But that may come from a mingling of the muscle signals in the dorsal cochlear nucleus. That would explain the people who can modulate their tinnitus by clenching fists for example.

Cyclobenzeprine did nothing to alleviate my tinnitus but id did great to relax my jaws. I was on a "low" dose i believe.

P.S. Since i live in a better and calmer place i clench my jaws much less anyway.

 

[Karl]

daedalus -
I'm sure that you feel like a guinea pig after trying so many drugs!

I'm sure the last thing you want to hear are more suggestions...but I actually had the same comment that Golly made:

I am surprised at the absence of Gabapentin and Pregabalin.

In certain situations (people with somatic tinnitus), gabapentin has worked. I read about someone with a brain lesion, who's tinnitus went away after taking gabapentin.

 

[Luca]

I'd be very interested to know if anyone has been to there and what was their experience?

Got the Rivotril, Deanxit, did tDCS, TENS. Seemed like a good guy. But they don't have miracles there either. (I went several years ago when it was still in the clinic and the waiting list a couple of months).

 

[Per]

I tend to clench my jaws. My tinnitus is somatic so if i clench my jaws i hear my tinnitus a bit louder.

That happens to me also, but you are explaining this phenomena as "somatic tinnitus" - not sure what you mean here, that everyone who can alter the T frequency and volume by jaw movements have T caused by mental trauma/stress or similar? That's how I perceive you when you write " My tinnitus is somatic so if i clench my jaws i hear my tinnitus a bit louder."

 

[Markku]

That happens to me also, but you are explaining this phenomena as "somatic tinnitus" - not sure what you mean here, that everyone who can alter the T frequency and volume by jaw movements have T caused by mental trauma/stress or similar? That's how I perceive you when you write " My tinnitus is somatic so if i clench my jaws i hear my tinnitus a bit louder."

http://www.tinnitusresearch.org/en/meetings/files2006/Bjorne-Treatment_of_Somatic_Tinnitus.pdf

 

[Per]

@Markku,

Thanks for sharing the info. I've read the content written by A Bjorne with great interest so I investigated further to find out where at Ystad Hospital he was working, I was just about to send an email to the address that was written in the document when I found this page: http://www.yts.se/english/index.htm

So the author is deceased in 2007, when I look at the properties of the document I see that it's created 14.08-2006.
However, the continuation of Mr. Bjorne's work seems to be held at the clinic in Beddingestrand, I will send them an email to learn more about this. The short document was focusing mostly on Vertigo and Meniers and the clinic in Beddingstrand is called Vertigo Tinnitus Pain, but although I doubt I have Menier I'm interested to learn more about their work and philosophies, cause I can relate to the criteria descriptions of what is referred to as somatic T. Both volume and pitch changes when I move my jaw in different directions, same thing happens when I bite and I also grind my teeth both when I sleep and sometimes when I'm awake too. You see, this is the problem with my T, no one seems to be even faintly interested in the causes! Not ENT's, not GP's, not the audiologist I spoke to on the phone either. She actually said "we don't focus on causes here." Most ENTs say that T is T - it doesn't change anything HOW you got it or what is causing it. They all seem to think that if the T loop or process has begun, it's just going to loop forever and the cause of it all is then irrelevant. I strongly disagree to this, cause why then are some dentists and neurologists occupied by specializing treatment for specific T types? And why then is some treatment methods effective on some T patients and not on others? In my world the answer is quite obvious, because we have T for different reasons and the causes are diverse!

I'll send them the email now. I live in Scandinavia so the clinic in Sweden is close.

 

[Ervan]

So im somatic tinnitus too.. Any treatment or medic for it?

 

[Codaz]

So im somatic tinnitus too.. Any treatment or medic for it?

Did you already visit a physiotherapist specialized in TMJ / Tinnitus?

 

[HugoW]

So here ends my lurking phase...
Before I properly introduce myself I'll give you a short English description of the Brai2n website

Once you get started at the clinic you will have an interview about your condition.
During the interview they will determine which diagnostic and treatment procedures are suitable for your condition.
Bring any medical information/data previously attained!
People from outside Belgium will have to pay 100€ in advance, because of insurance stuff.
The treatments will most likely not be covered by insurance due to the experimental nature of the procedures, but you will have to check this with your insurance company ofcourse.

The common treatment is described as following:
- qEEG determines which part of the brain is behaving incorrect
- ENT determines your tinnitus, audiometry and otoscopy
- MRI-scan to determine if there is any mechanical damage
- Neuromodulation plan according to the situation

They have four examination procedures:
- qEEG (brain activity localization)
- HRV (heart rate variability)
- fMRI (brain activity based on oxygen levels)
- NMR (magnetic resonance imaging)

Five non-invasive procedures:
- TMS (Transcranial Magnetic Stimulation, 20 minute/session, need multiple sessions)
- TDCS (Transcranial Direct Current Stimulation, 20 minute/session, need multiple sessions)
- TRNS (Transcranial Random Noise Stimulation, 20 minute/session, need multiple sessions)
- TENS (Transcutaneous Electrical Nerve Stimulatie, carry-on stimulation like pacemaker)
- sLORETA (Neurofeedback with source localization, not sure how this works)

Five invasive procedures:
- Spinal Cord Stimulation (think this is for pain sufferers)
- Cortical stimulation (they claim this to be effective for some cases of tinnitus)
- Perifere neurostimulation (for headaches, fibromyalgie and migrain)
- DBS (Deep Brain Stimulation)
- Intrathecale Baclofen (for spasm sufferers)

Hope this helps for now!

 

[Michael Murray]

FYI. I have a SCS (Spinal Cord Stimulation) device implanted. You are correct. It is for chronic pain.

 

[Mo_Mo]

I am thinking of visiting the clinic
But the earliest appointment they have is in 3 months
I've had my t for 6 weeks and 4 days after a strong Cold I had
Hence I would've had my t for 6 months by the time I visit them
Is there any other clinic someone would suggest visiting?

 

[Codaz]

@Mo_Mo Thanks for this info. 3 months pfff. I might sign up this week then if I have to wait that long.

 

[Mo_Mo]

@Codaz usually their treatments take 4 weeks, hence you will require to be in the area for approximately 3-4 weeks, until they do the initial investigation and then provide you with a treatment plan

 

[Codaz]

@Codaz usually their treatments take 4 weeks, hence you will require to be in the area for approximately 3-4 weeks, until they do the initial investigation and then provide you with a treatment plan

What are the changes of improvement?

 

[Mo_Mo]

What are the changes of improvement?

I am not sure to be honest, I will only know once I go there in couple of months

 

[Codaz]

I am not sure to be honest, I will only know once I go there in couple of months

What started your tinnitus?

 

[Mo_Mo]

What started your tinnitus?

when I got my tinnitus I had just finished from a bad cold which i had for 2 weeks, and I was taking claranise twice a day, I was also under some stress and pressure from work and my part time post graduate program.

claranise also caused me insomnia, I slept an average of 4-5 hours a day in that period

I have been 7 ENT's in the past 7 weeks, initially they said it could be an infection, since my Audiogram upto 8KHZ had no loss, furthermore I did 2 CT scans an MRI and an ABR and all of the ENT's I saw said they don't see any damage done to the ears.

 

[Codaz]

Yeah, but they check with a stupid light and can see only the first cm's behind the eardrum. What is INSIDE the ear, so from eustachian tube to the middle ear is invisible in my opinion. I never trusted that the ENT's gave the conclusion that can see everything and that nothing is wrong.

 

[JeffDamsko]

Have an appointment on the 12th of march at the clinic. Called them 2 or 3 days after the post of Hugo W. so waiting list not too bad.

Will report on after appointment.

So here ends my lurking phase...
Before I properly introduce myself I'll give you a short English description of the Brai2n website

Once you get started at the clinic you will have an interview about your condition.
During the interview they will determine which diagnostic and treatment procedures are suitable for your condition.
Bring any medical information/data previously attained!
People from outside Belgium will have to pay 100€ in advance, because of insurance stuff.
The treatments will most likely not be covered by insurance due to the experimental nature of the procedures, but you will have to check this with your insurance company ofcourse.

The common treatment is described as following:
- qEEG determines which part of the brain is behaving incorrect
- ENT determines your tinnitus, audiometry and otoscopy
- MRI-scan to determine if there is any mechanical damage
- Neuromodulation plan according to the situation

They have four examination procedures:
- qEEG (brain activity localization)
- HRV (heart rate variability)
- fMRI (brain activity based on oxygen levels)
- NMR (magnetic resonance imaging)

Five non-invasive procedures:
- TMS (Transcranial Magnetic Stimulation, 20 minute/session, need multiple sessions)
- TDCS (Transcranial Direct Current Stimulation, 20 minute/session, need multiple sessions)
- TRNS (Transcranial Random Noise Stimulation, 20 minute/session, need multiple sessions)
- TENS (Transcutaneous Electrical Nerve Stimulatie, carry-on stimulation like pacemaker)
- sLORETA (Neurofeedback with source localization, not sure how this works)

Five invasive procedures:
- Spinal Cord Stimulation (think this is for pain sufferers)
- Cortical stimulation (they claim this to be effective for some cases of tinnitus)
- Perifere neurostimulation (for headaches, fibromyalgie and migrain)
- DBS (Deep Brain Stimulation)
- Intrathecale Baclofen (for spasm sufferers)

Hope this helps for now!

 

[Mo_Mo]

I took an appointment for april
I also spoke to them for 20 minutes regarding their treatments, they seemed very helpful and informative
Although they do not promise miracles or any progress in the level of T or even making T disappear
Although they have patients who have had significant reduction in their T and visit them every couple of months to conduct routine treatments which seem to have an affect on their T
Their Treatments are purely aimed towards the brain since they believe T is to do with the brains and not ears