To question my husband being blind?

[Spencer0220]

Posting here for traffic. I don't actually know where to start with this.

When I met my husband 5 years ago, he had various medical problems.

Since a baby, he had hydrocephalus. One side effect of the surgery he had was a presumed blindness in his right eye. He couldn't see anything at all out of it, even light.

Over the years, he started commenting that he could see light. (We have a very bright bedroom.) About 2 years ago, he started to see shadows and could judge where the wall was on that side. His walking massively improved.

Today, he covered his left eye, and told me the could see the colour of the mattress and blinds.

Where do we go from here? He'd like to get to the bottom of what's going on and get the best vision he can.

But he doesn't want to waste anyone's time when he's not sure what he can see in that eye.

Equally, he uses a symbol cane to get around and he's terrified of being seen as a fraudster.

I just want to help him get the best from life.

Gosh, please put any further thoughts of time wasting, not a big enough improvement etc to one side, people go to the GP/medics for much, much less!

Sounds encouraging OP, he should get a full check to see what's going on. Good luck!

Definitely get checked out. My DH can't really see out of one eye - only colour and vague shapes. If both eyes were like that he'd certainly be blind but as it is he has a completely normal life, not clumsy, can drive etc. Your DH could have a significant improvement in his quality of life so make sure he's getting all the help he can!

We suspect his walking improvement is due to his eyesight. Timing wise it all correlates with his starting to use the symbol cane.

He also had a new shunt in 2020, where surgeon suggested his last shunt may never have worked properly.

So definitely something to look into

Wow, yes of course he should see if he can get this looked into! For one thing, an expert may be very interested and learn from this development, which could benefit others. It might even be that walking with the cane has caused some neurological benefit which improved his sight, or a positive feedback loop sort of thing.

Best wishes to him!

Why does he think he would be a fraudster? The majority of who are registered blind and use aides to get around do actually have some level of vision. How is that fraud? It’s the nature of “being blind.” There are different levels of vision but you can still be severe enough to be registered blind in one or both eyes.

🤣🤣🤣

With glasses, yes.

I'm so sorry your dad went through this.

We're hoping an optician might be able to help him get something useable from what he has. Even increased depth perception would be a bonus.

I love helping in all kinds of ways, but I'd be delighted if I could take a step back. I hope that doesn't come across the wrong way.

To add @JADS, no follow up at all due to Covid. He even chased, but they weren't interested.

I think because if anything went wrong, he'd be back in A&E.

Thank you. He's going to phone optician this morning.

He's had a lot of medical attention through the years and is very conscious not to take any unnecessarily.

Thank you! It's nice to know he's not alone!!

Sure you already know but being blind doesn’t mean having zero vision at all. If he’s able to make out light and colour then that’s a fantastic outcome, but he is still effectively blind and that does not make him a fraudster. It would be worth speaking to someone (doctor or optician I wouldn’t know!), but he shouldn’t be worried about being seen to be a fraud.

Gp can refer straight to eye hospital. This would be a better route than an optician who will not have the necessary equipment or clinical skills level it sounds like your husband’s complex condition requires.

Optician booked for tomorrow.

🤞🏻

Many cane users can "see" to some extent or other and indeed some people registered blind can recognise someone cross the street. There is no good or bad blindness/visual impairment and indeed every single persons impairment is their own experience. I would say two things - have a chat with RNIB helpline folk and see what their suggestions are, and speak to GP surgery and explain what is happening and that you want to at least speak to a GP and possibly get a specialist referral to look at the eye health of your husband and see what has changed both in him and in new techniques/surgeries/etc that are available.

Optician can talk through situation but would need to be quite experienced to handle any sort of eye test, I suspect they will refer on, or mention the GP route.

Yes, I must admit I though similar!

So glad to read the post though, and hope it’s good news for your DH.

@Spencer0220 Hi, you mention wanting to take a step back? Did you mean a step back from worrying about his sight, or a step back from helping him with things due to his sight?
I think a full assessment of his vision would be a good idea for you both. Does he drive? I ask because if he has normal vision in one eye then he would be able to legally drive.
People with one eye usually lead normal lives, drive, play sport etc so I'm wondering what else is going on that means he needs to use a cane? Does he have restricted visual field? Or nystagmus (wobbly eyes)?
The more we understand, the better advice we can give. What did the optician say?

What the optician say. Hoping good news. Love this thread...
It's a positive hope of improvement x

Fingers crossed for him! And well done for encouraging him.

DH does have a very limited sliver of vision in his right eye. So, he's now been told that actually he's got a lazy eye, but his brain is ignoring all but the tiny part that doesn't overlap with his left eye. Doing anything would be unwise as it would cause all sorts of problems with double vision etc.

He doesn't drive because of other health problems. His coordination and response times are very slow, and he feels that driving would be far too dangerous.

Couple this with a significant brain injury and I absolutely agree.

He uses a cane in public because he really struggles with things like not seeing people around him, and safely crossing roads etc. We realised he needed more help when my mum had to guide him round on an evening out to stop him falling because he couldn't see obstacles. Even with the cane he walked straight into the bins last month.

His cane has been an absolute game changer. He's finally able to leave the house alone and not panic. It means people will offer to help rather than writing him off as drunk because of his weaving as he walks.

Please don't misunderstand, I'm happy to help. But I'll be delighted if one day I'm not needed because he improves.

Other than what I just posted, the optician was very, very positive about the sliver of vision. It's the most DH has ever had.

New glasses, but just for prescription in left eye

Oh and thank you all for coming back to check.

That's All Very positive OP, thanks for the update. Does he have difficulty with steps or with crowded places or finding things in a cluttered environment? That could be a sign of cerebral visual impairment, especially if he had a brain injury. I'm also wondering if he has any visual field loss, has he had this tested?

That's great. Building more independence would be great - nobody would think it's because you don't want to help.

Steps are awful for him unless very shallow, but we put that down to his balance.

Visual field fine.