Update on a trip to the Walton Centre in Liverpool for visual processing issues.

Went to Liverpool today for what was documented on the appointment letter as 'visual evoked potential' test. The test can show how much signal from the eye is sent along the optic nerve and optic tracts.

I did not have the test, instead I was sent to the eye clinic to have my eyes tested. The range of tests showed what the last test showed - that there is nothing wrong with my eyes, in fact my eyesight has improved but that I was going blind for different reasons.

Rather than stopping the tests they said to continue it to see what happened. This was a bit of a visual phenomenon roller coaster ride. As before the right side of the visual field in the left eye went grey then black followed shortly by the left side of the visual field. As before I could still make out some of the orange center light. Then that disappeared. Then parts of my visual field came back so I could see bits, then it went dark grey. Then other parts of the visual field came back then went grey again. The orange light came and went but started to ooze blue, then the colors inverted, then came back, then totally disappeared. As these effects were coming and going gridworks of geometrical patterns formed with sparkling dots mixed in. This process repeated for 10 - 15 mins. Then after with both eyes open I could just see grey patches like clouds covering the visual field for a while until my vision returned but it was all pixelated.

Anyway, I've seen all these before but not quite like that.

The person I saw was an ophthalmologist with an interest in neurological effects of brain injury and vision. He said he found it all very interesting and was fascinated by the colored lenses I was prescribed by an independent behavioral optometrist. He said he knew there was controversy within the ophthalmology world about behavioral/ neuro optometry (some think it's mumbo jumbo). It was a very long appointment with him because he got me to explain the journey, I had taken all the different colored lenses and a book full of drawings showing all the different visual field effects that I had experienced and what the lenses had improved.

It turns out he is a fan of behavioral optometry along with a minority but growing number of ophthalmologists. He thinks there should be routine optometric screening for people with brain injuries because ophthalmologists cannot explain most of the visual effects people with brain injury have; and if colored lenses and yoked lenses give people stress relief and other rehab orientated effects then he's in favor.

BUT he said at the moment THERE ARE NO EFFECTIVE DIAGNOSTIC TESTS OR TREATMENT for visual processing issues caused by brain injury on the NHS.

Then he referred me back to the Walton Centre to a colleague who is also in favor of bringing behavioral optometry into the NHS. She will do the visual evoked potential test and other tests they are actively researching at the moment. He is also referring me to the Cardiff university school of optometry (best in the world he thinks) for other new tests and potential treatments that they are researching.

It turned out to be a good day and the sun was shining.

To be continued...............

[FlowerPower62]

Sorry to hear about this, but I do hope they can come to with something for you x

[Hidden in reply to FlowerPower62]

No, don't be sorry, it's all good because now it's real in the eyes (no pun intended) of the NHS.

After the tests yesterday they now believe me and are going to see if something can be done about it.

Luckily I kept all my notes (reads like visual psychedelic trip) and showed them the different lenses I had and what improvements they made.

My notes look pretty mad but if taken in context they actually fit into real medical categories.

This highlights the importance of keeping notes, diaries and journals because one day they may come in useful no matter how nuts the experiences sound.

[Teazymaid]

oh wow very interesting . Does help me understand why they have no idea why I went from long sighted to short sighted while I was on holiday as I couldn’t read the signs in the airport coming home . I have got hold of the guy you said about but I can’t afford to see him at the mo .

One thing that made my distance sight more blurry was when I was with the balance physio and doing more challenging exercises my sight went blurry like objects had shadows beside them . I wasn’t dizzy and it did settle down .

Flying again on Friday and wondering if this will have an effect on my sight .

Great news some eye DRs are beginning to understand how brain injury and your sight can be effected when your eye looks health to them .. Sue 😊

[Hidden in reply to Teazymaid]

Start recording the different effects. What are they in your experience, when do they happen, what are the environmental conditions, like you said what happens with different movement.

This was all the kind of stuff I recorded, it's mad, but now it all makes sense.

Write it down or use voice notes etc. Draw pictures, these came in very handy for me yesterday, most the visual phenomena I experience is recognizable or can be made sense of pictorially.

Just record the effects no matter how strange they may seem because one day someone may recognize them.

Have a nice trip where ever you are going, don't worry, just record the effects or no effects whatever the case may be.

[Teazymaid]

good idea I will start keeping notes ..going to tenerife 😊 Sue