Question about vision issue

[Foxrac]

I had my vision checked by experienced retina specialist, also I went thorough with 3 different retina specialists so I decided return to see old retina specialist that he did test when I was teen because he's familiar with deaf people with Usher Syndrome. Due to minimal to no change in 3 tests after 14 years - ERG, visual field test and dark adaptation test (it was old fashioned test before ERG introduced), also appearance of retina. My ERG result is normal, visual field test is good (they only testing the importance of degree that is necessary to drive, not extended range), dark adaptation test is delayed (no night blindness) and my retina is normal (beside floaters).

People with RP/US lost night vision (night blindness - it means you only see circle of light outside - description of street lamp and cannot see road, grass, house), abnormal ERG result (reduced to absent, even in toddlers with healthy eye), no response to dark adaptation test (usually happen in first decade), abnormal retina and visual field test shows the change from significant to big, depending on individuals. That what I don't have like that, also my retina specialist said that diagnosis of RP/US is based on symptoms.

He decided to change the diagnosis from Usher Syndrome/RP to unknown so he believes that viral meningitis in 1988 is blamed for vision issue, also my mother told me that I was in military hospital for 1 week and after wake up, I lost the ability to use voice because my motor is broken due to brain damage, also I cannot hear at all and didn't know about my vision and my balance was bad so it take while to learn about how to walking, along with occupational therapy at school.

Based on visual field test result, he declared that I'm safe to drive on both of day and night after he consulted with DMV representative and lawyer.

My retina specialist and I agreed to enroll the study and take genetic testing to rule US/RP out - that's necessary for cataract surgery.

I'm somewhat relieved but I just came out without official diagnosis.

I have cataract since 2011 and have floaters since 2002 - no change and it don't go away as I expected. The cataract is annoying because of glare and cloudy in circle of eyes - it come on and off.

I had genetic testing in 1990 and it was normal, but when babies fail the hearing screen will be tested for Usher Syndrome and deaf related diseases so Usher Syndrome can be detect via genetic testing in newborn.

Question for deaf people with vision issues - do you have limited visual field that is not related to US/RP and glaucoma?

 

[Reba]

Wow! That's surprising news. That sure changes things.

How do you feel about this?

 

[Bottesini]

Yes, but mine is Ocular Histoplasmosis Syndrome diagnosis, so unrelated to deafness.

But I actually wonder if my diagnosis is correct, as my grandfather was blind also, so I wonder if it isn't some genetic thing .

 

[Reba]

Yes, but mine is Ocular Histoplasmosis Syndrome diagnosis, so unrelated to deafness.

But I actually wonder if my diagnosis is correct, as my grandfather was blind also, so I wonder if it isn't some genetic thing .

Intriguing.

 

[Foxrac]

Wow! That's surprising news. That sure changes things.

How do you feel about this?

I'm relieved and confused.

I decided to say - life goes on and I don't have to worry about vision issue, but cataract is nuisance due to glare.

I have to rid of glossy monitor and replace with matte IPS monitor - much improved.

 

[Reba]

I'm relieved and confused.

Understandable--you're going thru a time of transition.

I decided to say - life goes on and I don't have to worry about vision issue, but cataract is nuisance due to glare.

Can the cataracts be removed thru surgery?

I have to rid of glossy monitor and replace with matte IPS monitor - much improved.

Good.

 

[DeafDucky]

Wow.

Well it seems the field of ophthalmology has changed A LOT in the last 20-30 years.

I have to do the visual field test every year. Back in 1988 I had my first diagnosis of glaucoma. At the time it was kind of not exactly in control (or so they said) even with medication- that settled over the years. Over the years several doctors have said my corneas are thicker than normal because of the many eye surgeries I've had since I was a baby (a bunch as a baby up to 2 years old then a few after that related to lens implants, trabeculectomy and eye muscle correction).

Now.. in 2015, the first eye doctor I visited after I moved back says... I don't have glaucoma. The second doctor corroborated this (he's the one I'm seeing now)...he said that the criteria for determining glaucoma has kind of changed over the years but he still wants to keep an eye on mine.

It used to be that if your eye pressure was above 20, boom you have glaucoma. That's no longer the case. While normal/average /ideal is between about 8 and 19/20 some people do have higher numbers and never develop glaucoma. In over 20 years I have never had damage to my optic nerve (they're always impressed despite it being a bit underdeveloped). It is also possible to have lower pressure numbers and still have glaucoma damage.

Anyway-- to answer your question... I'm not sure if my visual field is "limited" or not but I do know that because of the years growing up aphakic (no lens after cataract removal) my depth perception and side vision stunk- I could still see but it was still on the poor side. Every doctor I've had never questioned my ability to drive (fat glasses and all) while the DMV always had a cow.

Downside is I traded the glaucoma dx for a new one that I'm frankly a teeny terrified about. :P.

All of my vision/eye issues are connected to (or likely) Congenital Rubella Syndrome.

 

[DeafDucky]

I have to rid of glossy monitor and replace with matte IPS monitor - much improved.

matte IPS monitor? Explain? Thanks.

A little surprised they haven't suggested surgery yet. I know sometimes doctors don't want to mess with cataracts if they are not interfering that much with daily life vision wise. My aunt had one for I think a few years but she was much happier once it was removed and replaced with a lens implant- less glare and the colors were brighter.

 

[Foxrac]

Understandable--you're going thru a time of transition.


Can the cataracts be removed thru surgery?


Good.

Yes, cataract can be removed and replace with artificial lens but due to complication, my retina specialist want to wait until after study and genetic testing.

If surgery went wrong, it could cause retina detachment, that's serious eye emergency.

 

[Foxrac]

matte IPS monitor? Explain? Thanks.

A little surprised they haven't suggested surgery yet. I know sometimes doctors don't want to mess with cataracts if they are not interfering that much with daily life vision wise. My aunt had one for I think a few years but she was much happier once it was removed and replaced with a lens implant- less glare and the colors were brighter.

Matte = anti-glare.

IPS = best color accuracy, not too bright or white like old TN panel.

I replace Samsung glossy TN monitor with Dell IPS monitor with anti-glare.

Alldeaf forum was all white and blue with old Samsung monitor but with new monitor, I see blue, gray (light and dark) and less bright white.

My retina specialist is scared about lawsuit because he knows that cataract surgery is high risk for anyone with US/RP - it causes retina detachment so that why they want to wait until it is absolutely necessary.

That why I have to enroll the study and genetic testing to rule out or confirm the diagnosis.

I know some retina specialists rule US/RP out if ERG result is normal but my retina specialist is skeptical about it.

 

[Foxrac]

Wow.

Well it seems the field of ophthalmology has changed A LOT in the last 20-30 years.

I have to do the visual field test every year. Back in 1988 I had my first diagnosis of glaucoma. At the time it was kind of not exactly in control (or so they said) even with medication- that settled over the years. Over the years several doctors have said my corneas are thicker than normal because of the many eye surgeries I've had since I was a baby (a bunch as a baby up to 2 years old then a few after that related to lens implants, trabeculectomy and eye muscle correction).

Now.. in 2015, the first eye doctor I visited after I moved back says... I don't have glaucoma. The second doctor corroborated this (he's the one I'm seeing now)...he said that the criteria for determining glaucoma has kind of changed over the years but he still wants to keep an eye on mine.

It used to be that if your eye pressure was above 20, boom you have glaucoma. That's no longer the case. While normal/average /ideal is between about 8 and 19/20 some people do have higher numbers and never develop glaucoma. In over 20 years I have never had damage to my optic nerve (they're always impressed despite it being a bit underdeveloped). It is also possible to have lower pressure numbers and still have glaucoma damage.

Anyway-- to answer your question... I'm not sure if my visual field is "limited" or not but I do know that because of the years growing up aphakic (no lens after cataract removal) my depth perception and side vision stunk- I could still see but it was still on the poor side. Every doctor I've had never questioned my ability to drive (fat glasses and all) while the DMV always had a cow.

Downside is I traded the glaucoma dx for a new one that I'm frankly a teeny terrified about. :P.

All of my vision/eye issues are connected to (or likely) Congenital Rubella Syndrome.

Oh wow, you are brave about thorough many eye surgeries and it must be strong like steel because more surgeries = more complication.

My mother had rubella when she was in kindergarten in 1965 and it was horrible disease, also she went thorough with measles and mumps.

 

[DeafDucky]

Well the early surgeries I didn't have a say in lol .

I knew someone who has Usher's who got lens implants for both of his eyes. I went with him when he had his first one done (as he doesn't/can't drive). As far as I know he hasn't had any complications in the...hmm.. it's been at least 13 years now I think.

 

[Foxrac]

Well the early surgeries I didn't have a say in lol .

I knew someone who has Usher's who got lens implants for both of his eyes. I went with him when he had his first one done (as he doesn't/can't drive). As far as I know he hasn't had any complications in the...hmm.. it's been at least 13 years now I think.

Same here, I met one of woman with US and she had cataract surgeries - it is all successful with no complication.

Of course, she can't drive as well.

 

[Vorsia]

I have optic atrophy and myasthniea gravis that affects it as well and nysthagmus .