Neuro opthamologist

[ladycassy]

Hi Has anyone seen a neuro opthamologist (hope I spelt it right)?

I had a bleed 18 months ago and lost part of my sight. I havent been refered to any specialist about this. Been discharged form hospital over a year ago.

Fed up with Doctors lack of help and consideration that I am trying to get my life back with no help from them.

I have asked to see this specialist, which of course you cant get to direct. I have to wait to see an opthamologist who may pass me on. I have looked into going private but they are to far away and expensive. Any ideas please.

[Kirk5w7]

Sorry, no help here, I'm still waiting for an appointment for a test to determine just how much of my peripheral vision I have lost, but I think that as you can manage you're not a priority, I'm 20 months down the line and even though I flagged this up very early on I can see all their waggling finger tests etc., but there's only me experiencing the vision problems so it is of no consequence to others, even though it causes me to not go out on my own, cos I find it too stressful crossing roads etc cos I can't turn my head fast enough to be confident. Plus, I don't think anything can be done anyway, damage to the optic nerve is pretty much irreversible, I've been told, quite bluntly, others have more problems!!! Some consolation!!!! But reasons to be cheerful, eh.

Hope you have more success than me xxxx Janet

[ladycassy]

Thank you for response. I need to know others experiences to be better able to deal with the powers that be.

I am fed up with others having power over what we can and cannot have. I am going to fight until someone listens. I have had press coverage because if going bAck to work so I will try and make known the problems lots are having accessing treatments I am thinking if going to my mp to get them in my corner. After all I pay my taxes n stamp. Wish me luck. That's again.

[Danslatete]

I got my field of vision tests done at my normal specs place. I was referred from there to the hospital. I saw a optomology person who did lots of test for my double vision and field of vision. I was given exersice a to do and a new prescription of specs. I was put on waiting list for prof at ophthalmology. I had more tests and then another appointment for more tests and then the first Botulism injections in my eyes. Then it was more tests and another appointment with prof, more test more injections more new specs , repeat! Then I got a referral to neuro ophthalmology ology to determine what was down to the brain injury and what was eye related. Long drawn out process.

One of my eyes follows anything that moves or is in the background, like if I read a book then I can't block out the clothing or what ever is below he book, also driving in rain/snow at night is a nightmare it's like going thru a warp speed event with th enterprise and my eyes are everywhere. That is why I wear a patch.

[sospan]

Hi,

Vision problems are sadly quite common after an incident with the brain. A really good story is of Hillary Clinton whom also suffered the same - worth "googling"

I knew there was something wrong with my vision but the NHS were taking so long. After waiting a year, I finally gave up and started looking at private options. I came across BABO (babo.co.uk) -British Association of Behavioural Optometrists.

The one I went to in Cardiff was absolutely brilliant not only confirmed the vision problems but pin pointed a number of the causes. Some of them have close links to the NHS consultants and sometimes make a referral.

I think my session cost around £125

[ladycassy in reply to sospan]

Thanks for reply I will look into the information you have provided. I will contact headway tomorrow to see if or what can be done to fight to get the help needed.

Was the results of seeing the neuro ophthalmologist worth going to for you?

Thanks again

[sospan]

No problem,

After my accident I was suffering from blurred vision (words were running into each other) and very sensitive to light. I went to see my normal optician and despite my eyes streaming she could find nothing much wrong and would only recommend a slight set of prescription lenses for reading.

I went to see the vision specialist and she undertook quite a few tests and found that:

1) I had teaming and tracking issues

2) My depth perception was way off

3) With some tests there seemed to be a lag between my eyes reacting and brain responding to the input

There is always the strange feeling after being given results like that - knowing you have some physical problem but at the same time it explains the symptoms. I hadn't realised it before but when I walk I put my hand out and trail it along or touch the furniture. Apparently this is a sub conscious reaction to my depth perception. Interesting to know why you do certain things,

Alongside some specialist lenses there is a program of exercises

[wernickes]

Yes I've seen one. A very good team. I had a bleedcwhichncaysed double vision but they helped me a lot with this. The tears they do are berry interesting!

[nemo_really]

Yes. I was referred to the hospital ophthalmology dept by the neurosurgeon who carried out my back op (nothing major-double laminectomy) and they saw me pretty quickly. My complaint was that my normally sharp right eye vision had gone blurred in the space of a couple of days (the left eye has been poor since my head injury).

I'm not sure what to make of the experience. After a couple of examinations by the ophthalmologists, the departmental Professor had a look and thought he'd detected slight pallor of the optic disk. He then transferred me over to his neuro - ophthalmology team. My vision had deteriorated to the point where I'd given up driving at night (frightened myself silly after turning into a side street and finding I couldn't see anything - eek!). I was also having problems with sharp contrasts, which led to difficulty reading computer screens and adapting to sudden changes in brightness (eg driving under trees on a bright day)

The neuro guys said that my optic disk was decidedly pale by the time they saw me and any optician would have spotted it. They checked my vision with a pinhole test and colour chart. I really struggled to get most of the bottom line I could read and got a couple wrong. I also had difficulty seeing some of the colors and got a couple of these wrong as well. Oh, and I'd lost the ability to accommodate (change focus).

Here is where I decided I was living in some alternative reality... They said my vision could correct "back" to 6/6 and missing some colours was fine. They also said that the pallor had probably always been there, and had just never been commented on because it was just a common individual variation. I pointed out that the pallor had gone from "barely noticeable" to "obvious" in the space of a month or so, which kind of cast doubt on the "always there" hypothesis. Furthermore, given my medical history, and some of the things that had been noted about my eyes, I'd have been surprised if the pallid disk didn't receive mention by somebody. In addition, my vision had always been 6/4 and I'd never missed a letter on any line and ditto for the colour tests. They then said "impossible" and that I must be mistaken , which surprised me as I didn't think 6/4 vision was particularly rare.

Anyway, I sent off for my Service medical records and discovered that I wasn't quite right. My normal vision was indeed 6/4 (in the right eye), but there had been a few occasions when I'd complained of blurred vision and been tested at 6/9, including a pale optic disc on one occasion. Naturally, this evidence was ignored. :-\

My vision improved over time and is now up to 6/5. Night vision is better and I don't have problems with driving at night or reading screens. However, I still can't accommodate and need varifocals for driving. Oh, and the right eye optic disk now looks no different from the left eye one, according to my last 3 or 4 eye tests ... Hey, ho.

The moral of this story is get your facts together *before* you see anybody and question anything that doesn't sound right.