Struggling to find an optician aware of my eye condition

General
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I have SCA 7 and I'm not in a wheel chair yet, I'm registered with the association of the blind as I am partially sighted. Despite double and blurred vision, I can still manage with glasses which I use as a magnifier and light filter as they are tinted. I recently went for my annual eye check up at the Neurological Hospital in London, and the consultant, following his examination, said that there could be better glasses made for me than those that I am currently using. My problem is that the opticians (spec savers) do not understand what ataxia is and the consequences of SCA 7.

Does anyone have the same issue and have you found a solution?

Thanks.

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Hi Hopaliv!

Ask your optician (Specsavers) to refer you to the Eye Department at your local hospital. I was referred to

the Royal Victoria Infirmary in Newcastle after my optician couldn't do any more for me, you probably need

an eye specialist instead of an optician. I've had blurred vision, and have permanent double vision. This

was caused by Iritis, like conjunctivitis but serious. At the moment I have tinted glasses, with a built in prism

and an adhesive prism over that. The prism stops double vision, I promise you. They just need to give you

the correct strength, and place it in the best position in the lens. This can be best achieved by being referred

to a Hospital Eye Department. Good Luck!

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Thank you very much for the advice. I'm going to ask for a referral to the local hospital low vision clinic. I have never heard of this prism, what is it exactly?

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Hi!

For the best explanation you would probably need to google it, but I'll explain as best I can.

As the name suggests, it's a prism, it deflects light away from the problem area. In my case

where the pupil is stuck to the back of the eye, this has worsened over the years. I started

off with a fairly light prism in the lens and could wear almost any style of glasses. But now

the prism is just about the maximum they can use, it makes the lens heavy, I need strong

frames to support it. For even better effect, they stuck an aditional adhesive prism over

the top, it looks odd but it works.

In it's place, I now have a contact lens for my left eye. This looks like a fake eye, you can't

see through it. The good news is, no double vision. The bad news is, I could do with a

rear view mirror on my forehead!

Also, if I decide not to use this, and believe me, this is true. I can have a Botox injection

in my left eye to help control the double vision!

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You MUST see a neuro Opthalmologist. It is the same as needing to see an actual ataxia neurtologist. Nothing else willl do.

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Prism glasses only work sometimes because they are fixed lenses. With the double vision you get from ataxia, your eyes wander. Even surgery is only a temporary fix. A pirate patch or cloising one eye is the only true and permanent relief. I have been closing one eye for years. You can alternate easily, so one eye deoesn't get weak>

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Hi Jonas,

My Neurologist referred me to the Consultant Opthalmologist I see. Surgery was ruled out because I'd

suffered such damage due to Iritis, there was concern any interference would cause Iritis to return. The

eye causing the problem is the weakest, I can't walk around permanently with one eye shut, I need

glasses with some prescription anyway.

Nystagmus is not something everybody gets with ataxia, we know that from comments made on this site.

I do have it, and it effects me as you described but only recently did I come to the conclusion about the

prism.

When I told my Consultant, as an alternative to the prism, she offered an Occlusal Contact Lens. Which

does the same thing as you advocate, just seeing with one eye. But, I still wear glasses with it because

of the prescription I need for distance, and reading.

She also offered a Botox injection to fix the eye in one position. This is done on a regular basis at this

hospital, proves to be effective, and is re-administered every 3mths. Obviously, this is not everybodys

cup of tea, no-one forces you to have it.

I was having such difficulty with my sight, I was willing to try anything that wouldn't make it worse.

Have you tried prisms yourself, or had surgery?

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I live in the US so I don’t think my experience can help, but perhaps… I see a Neuro Opthomologist who coordinates my care with an opthomologist and an ataxia specialist. I found them through ataxia.org which is the international Ataxia Organigation. I will check and give you any pertinent info…

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I am having a terrible time with light sensitivity after my cataract surgery. I don’t know if it has anything to do with my ataxia. The last surgery (second surgery) was done on Dec. 02, 2020. I don’t know how long it will last

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I’m not a doctor. But I think your eyes have to learn (readjust) to the new lighting. However, you should bring it up with your doctor. :+1: Neurologist doctor and ask what you should tell eye doctor.

FYI, I had the eye doctor add Transition lenses to my glasses. If you don’t know Google Transition lenses.

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Thanks I have an appointment with my ophthalmologist in 2 weeks

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I only wish you the best!!!:grin:

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:thinking: Did you have Strabismus Surgery…Or Cataract Surgery…
Many years ago I had Iritis, this left me with chronic eye problems, one of them being extreme sensitivity to light. For a long time I wore heavily tinted glasses.
As time passed my eyes gradually adjusted and the strength of tint decreased, although I still need sunglasses outdoors.
Recently my eyesight has blurred, light sensitivity is making it worse, and I’ve experienced some pain, after being examined it was thought that Cataracts were the problem.
Unfortunately I’m now on a waiting list to see a Specialist to confirm this. It could be that further Strabismus Surgery (to pull the eye muscle taut) would rectify the problem…or that Cataract Surgery would be ruled out because of my history of Iritis.

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i HAD CATARACT SURGERY

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:slightly_smiling_face: Apologies…I did read that…but for some reason it didn’t register, I can only blame ataxia. I do sometimes have issues.
Light sensitivity is something I hoped would be alleviated with Cataract Surgery, for me it causes blurriness…
I hope you’ll post re your progress :slightly_smiling_face:

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I had cataract surgery just over a year ago. I definitely DO find that I’m more light sensitive. I do not have ataxia, I deal with psoriatic arthritis. That said, for me, I do wonder if it’s just because I was accustomed to wearing glasses with transition lenses, and now I don’t wear glasses at all.

Sharon from ModSupport

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My ophthalmologist is treating for possible iritis with Prelensa and Pred Forte drops. it’s been only 2 days. So I should know if it’s helping. So far, not much of a difference.

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:frowning: I empathise…it took a short while for signs of a return to normal.

Initially I’d gone to my GP because I thought it was Conjunctivitis, and that was what I was treated for. It wasn’t long before I had a ‘toothache like pain’ in my eye, and had to go to Eye Casualty at a local hospital.
I was seen by a Specialist from the Eye Department, who immediately diagnosed Iritis, and prescribed Pred Forte Drops. At one point I had an injection into my eye.
It was serious because I’d been misdiagnosed originally, and the pupil became ‘stuck’ to the back of my eye. I was diagnosed with Uveitis.
During recovery my eye was very sensitive to light, I could hardly bear to watch TV without sunglasses. And, sensitivity to light is still ongoing, although I don’t know how much of this is due to Cataracts.

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SCA1 here, just had strabismus (eye muscle) surgery. Double vision completely resolved. Family says I’m even walking better, probably due to better depth perception.

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:slightly_smiling_face: :+1: It’s good to know you experience such good results. I found I felt better all round when vision wasn’t affected :slightly_smiling_face: