[Halfnelson]

Hi all,

Almost two years on from my concussion and I'm still here but not much better.

I just have a few questions regarding some of my recent medical appointments, findings, and diagnoses;

1. LENS Therapy

I visited a Psychologist a few days ago who recommended the use of Low Energy Neurofeedback System therapy to help me recover from my concussion. 6 - 10 30 minute appointments. He appeared very confident that this would greatly reduce or even eliminate the majority of my symptoms.

2. Right beating nystagmus

I also recently completed a battery of vestibular assessments. Although I am yet to receive formal feedback from the ENT specialist, the Audiologist who administered the assessments indicated that I had 'right beating' nystagmus. This is apparently an indicator of damage to the vestibular system which explains my balance and coordination issues. I am not sure what can be done about this but initial research indicates that anti-convulsant medication is often prescribed.

3. Neuro-Ophthalmologist Assessment

A few weeks ago a Neuro-Ophthalmologist diagnosed me with vestibular-ocular mis-match and has recommended that I visit a neuro-physiotherapist, possibly for the epley maneuver, which should appropriately relocate the supposedly displaced otoliths in my left inner ear.

Does anyone have any experience or thoughts on the above three areas?

Thanks!

[berkeleybrain]

I'm only into month 10 of my concussion, and I am still learning a lot from this forum.

I am currently undergoing vision therapy / prism glasses for convergence insufficiency and accommodation issues since my eyes no longer work in binocular fashion. I saw some improvement in the beginning, but I've plateaued now.

My ENT did a battery of test showing peripheral and central vestibular dysfunction. I am going to do more tests. The treatment is often vestibular therapy, epley manuevers (peripheral), sometimes medication and rarely surgery.

I have heard that some of the medications can have severe side effects for vestibular- but I am still learning about this as well for myself.

I have heard the EEG/neurofeedback works, but only if your binocular vision/gaze is stable. The lights can sometimes trigger headaches or migraines if not.

Other than vision and vestibular therapies, as well as prism lenses, I think there is very little treatment.

I have also been guided by others on this forum that the timeline can be long- perhaps 3-5 years!

My neuro-ophthalmologist said that they are still researching the connection between vision-vestibular systems. Let us know what you uncover as I will. There is much to be learned from each other.

[Mark in Idaho]

Half,

Regarding the psychologist who said

"1. LENS Therapy

I visited a Psychologist a few days ago who recommended the use of Low Energy Neurofeedback System therapy to help me recover from my concussion. 6 - 10 30 minute appointments. He appeared very confident that this would greatly reduce or even eliminate the majority of my symptoms."

He is violating FDA regulations by suggesting LENS to treat or heal concussion symptoms. There have been no verifiable studies to support that claim. In fact, LENS has caused seizures in some Post Concussion patients. Len Ochs, maker of the LENS system has refused to open his research data to others so they can assess its value and risk potential. He got FDA exemption by claiming there is no risk of injury but suggests that it should not be used by anybody who has a history of seizures.

[SpaceCadet]

Hi,

I'm going in for LENS treatment this month. One of my brain injury friends who has literally identical symptoms to me has reported that its greatly reduced her TBI/PCS symptoms. She has her life back now and claims to be 30% better than she was before starting the treatment. I've got everything to gain and nothing to lose, so, I'm going for it. After seeing dozens of doctors, taking every medicine under the sun, neuropsych tests, MRI, CT, EEG, etc. and being told my symptoms were psychological (bull @@@@)...I think I've finally found my answer. If not, at least I could say I've tried everything.

OP, are you anywhere near California? I've been referred to a research program in San Diego that is helping people with prolonged PCS symptoms. They are affiliated with someone who run a LENS machine and wants to help people by offering the treatment for $0.00 (free). I will gladly give you their contact information.

I can't guarantee it will make you feel any better. But if youre like me, desperate with nothing to lose, I think it's at least worth a try. Even if it costs you a trip to San Diego. I'm too young to live my life like this. And you know what, nobody deserves to be subjected to this type of torture.

Shoot me a PM if you want to talk in private.

Nick

[Halfnelson]

Originally Posted by SpaceCadet

Hi,

I'm going in for LENS treatment this month. One of my brain injury friends who has literally identical symptoms to me has reported that its greatly reduced her TBI/PCS symptoms. She has her life back now and claims to be 30% better than she was before starting the treatment. I've got everything to gain and nothing to lose, so, I'm going for it. After seeing dozens of doctors, taking every medicine under the sun, neuropsych tests, MRI, CT, EEG, etc. and being told my symptoms were psychological (bull @@@@)...I think I've finally found my answer. If not, at least I could say I've tried everything.

OP, are you anywhere near California? I've been referred to a research program in San Diego that is helping people with prolonged PCS symptoms. They are affiliated with someone who run a LENS machine and wants to help people by offering the treatment for $0.00 (free). I will gladly give you their contact information.

I can't guarantee it will make you feel any better. But if youre like me, desperate with nothing to lose, I think it's at least worth a try. Even if it costs you a trip to San Diego. I'm too young to live my life like this. And you know what, nobody deserves to be subjected to this type of torture.

Shoot me a PM if you want to talk in private.

Nick

Thanks Nick - I actually live in South Australia so a trip to San Diego may not be very cost-effective! I've been to the States before though and really enjoyed San Francisco.

Thanks Mark - It does appear that the usefulness of LENS to treat concussion disorders is still poorly understood and could perhaps induce negative side effects. Despite this, I have absolutely nothing to lose and may still give it a shot.

I will try and keep everyone updated on the LENS therapy as well as other therapies following on from my nystagmus and vestibular-ocular mismatch diagnoses.

Starting to feel like a bit of a 'patient' and trying not to get caught in this negative mindset.

Can LENS therapy reduce PCS headaches? Thanks

Originally Posted by Halfnelson

Thanks Nick - I actually live in South Australia so a trip to San Diego may not be very cost-effective! I've been to the States before though and really enjoyed San Francisco.

Thanks Mark - It does appear that the usefulness of LENS to treat concussion disorders is still poorly understood and could perhaps induce negative side effects. Despite this, I have absolutely nothing to lose and may still give it a shot.

I will try and keep everyone updated on the LENS therapy as well as other therapies following on from my nystagmus and vestibular-ocular mismatch diagnoses.

Starting to feel like a bit of a 'patient' and trying not to get caught in this negative mindset.