Vision, eyes and visual problems

Vision, eyes and visual problems

Postby Mgh » Sat Oct 24, 2015 12:41 pm

It was problems with my eyes that led eventually to the diagnosis of my pituitary macroadenoma in 2011. A visual fields test showed a field of vision so reduced that I was immediately declared unfit to drive. Very shortly after that I had an MRI scan and transphenoidal surgery to remove the tumour because of the pressure on the optic nerve.
After surgery the main emphasis was on getting the medication sorted to address the hypopituitary/secondary adrenal insufficiency. There didn't seem to be any attention given to what was happening with vision other than the change in visual field.
My measured visual field improved but that is not the full story. Quite often my vision is fuzzy but eye tests do not show this. I understand now that there is some permanent damage to the optic nerve. I wonder if the effect of this varies.
I wonder how many people out there experience some problems with their eyes. I noticed when I did a search of the forum that there were a few. Most people who mentioned a problem with a particular eye said that like me that it is with their left eye.
It would be great if others could share their 'eye' experiences from the different stages of their pituitary journey. :!:
Mgh
 
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Re: Vision, eyes and visual problems

Postby Carl » Mon Oct 26, 2015 5:25 pm

Goodness gracious me, you have just described my journey almost exactly. How spooky!

In 2013 I was diagnosed with a 3cm macro adenoma which was successfully removed through my nose - I had peripheral vision loss too - although that wasn't exactly how I 'saw' it. The test showed a clear loss of peripheral vision, but to me it was just 'odd vision', feeling parts of my vision were missing....or waking in the middle of the night and thinking I'd gone blind in my left eye. Anyway, since the tumour has been removed, the tests and my experience show the 'odd vision' has completely gone and my visual fields are totally normal once again.

However......

All this happened in May 2013, in October 2014 I went for an eyesight test and it was determined I needed a new prescription. I picked up the new glasses and after a couple of weeks of struggling, I realised that my left eye just wasn't seeing very well with this new prescription. I went back to the optician who retested me and made sure they had made the prescription correctly, which they concluded they had. I went to a 2nd optician, who concluded the same. So my optician referred me to my doctor, who referred me to a hospital consultant. The outcome is that the optic nerve to my left eye was indeed permanently damaged and the nerve is paler than it should be, likely the blood supply isn't quite as good. The damage won't apparently get any worse, it is at a level and will stay there.

What it means is my vision in my left eye is a bit blurry. I need to go back to the optician to see if they can slightly improve the prescription - they weren't keen on doing this until they knew the cause. The weird thing is if I put my wifes reading glasses over the top of my varifocals, the improvement is massive. So I don't quite understand what's going on.....

So yes my left eye is worse than my right, yes it is optic nerve damage. I believe now that because the focus (no pun intended) was on my visual fields and making sure the tumour was gone, I didn't even notice the (probably) gradual worsening eyesight. What made it stick out like a sore thumb in the end was having new glasses that I expected to make my vision perfect again - when that didn't happen I realised that in fact I had slightly substandard eyesight for quite a while. Don't get wrong, my vision isn't bad, I am typing this on a 14" laptop screen without issue. But small print is a struggle at times.

Cheers, Carl
Carl
 
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Re: Vision, eyes and visual problems

Postby Mgh » Mon Oct 26, 2015 6:46 pm

Carl, what you have added describes very clearly what I have experienced even down to the improvement when putting reading specs on top of normal specs. It seems difficult to arrive at an optimum pair of specs! Every now and again I experiment a bit to see what difference it makes. Sometimes my eyes seem to be more fuzzy than at other times but no specs can address that. Originally, post surgery I could read the time on the bedside clock radio in the dark; over time it gradually got fuzzier and fuzzier. Sometimes I can just about guess the 'fuzzy' time displayed but often I can't.
I wonder if there is any research out there into the visual aspects of pituitary condition in people whose optic nerve may have been impacted.
Mgh
 
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Re: Vision, eyes and visual problems

Postby Carl » Mon Oct 26, 2015 7:41 pm

Yes to varying levels of fuzziness here too. It is definitely not a constant thing. Certainly the eye consultant I saw couldn't really explain anything beyond confirming nerve damage and my Endocrinologist hadn't really seen a similar case like mine. I did some googling and like you found a bit of anecdotal evidence of eyesight issues but nothing concrete.

I have wondered whether I am worse when I am low on Cortisol, so other factors may impact it. Of course it is a difficult thing to pin down. I wonder wherther Pat or one of the pituitary staff happen across this thread could advise. I'll have a look over on the Addison's Disease forum where I am also a member.

EDIT - my Endo was also fairly sure that although I did not notice the issue immediately, the damage must have been present and probably down to the tumour. I was worried that the tumour was regrowing and impacting the nerve again, but an MRI has proved otherwise.
Carl
 
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Re: Vision, eyes and visual problems

Postby Carl » Mon Oct 26, 2015 8:38 pm

Chatting to my wife whilst I was doing the washing up, she reminded me of another thing the eye consultant said....which leads me to an analogy!

Imagine my eyes are a TV arial and the arial cable that connects the arial to the TV is my optic nerve.

I'm not sure how, but opticians are able to correctly determine the correct prescription for my eyes. Even though I have the fuzzy vision that the glasses cannot correct, they are able to say with a good deal of certainty they have the correct prescription....verified in my case by two different opticians. So they are able to say they have tuned my eyes (or TV arial) correctly and it should give a perfect picture. However, the TV arial cable (my optic nerve) is old and damaged and it cannot carry a very good signal to the TV in the front room.....I suppose in this case the TV must be my brain!

Therefore no matter how good the picture coming out of the arial, the signal gets degraded down the damaged optic nerve and arrives a bit scrambled in my brain and is interpreted as fuzzy vision.

If that analogy makes any sense, what I'm trying to say is because of the damaged optic nerve, no amount of spectacle tinkering is going to help if the information is getting scrambled along the way.

Whilst this is fresh in my mind, I have tweeted (I'm a big Twitter fan) some Endocrinologists who were looking for cases for the 2016 pituitary conference :)
Carl
 
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Re: Vision, eyes and visual problems

Postby Mgh » Mon Oct 26, 2015 9:44 pm

A great analogy. That explains the optic nerve damage very well. Your case sounds very similar to mine. I too have wondered if there is an interaction between cortisol levels and the fuzziness of eyes. Trying to get the medication sorted so as to balance the endocrine system takes up so much time and energy that the eyes (other than visual fields) seem to be ignored post surgery. I feel that there is more to learn about pituitary eye issues but so far I cannot find reference to any studies.
My husband and I intend to attend the conference. It would be good to have an opportunity to 'compare notes' with others who have these 'iffy' eye experiences. Although my vision still operates well in the majority of situations, I feel my eye 'fuzziness' (for want of a better label) continues to deteriorate. I have started to use a magnifying glass sometimes to help 'defuzz'.
My next MRI scan is next week. The neuro opthamologist is part of the team who will view it.
Thank you Carl for your very comprehensive and helpful response.
Mgh
 
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Re: Vision, eyes and visual problems

Postby Mgh » Wed Sep 14, 2016 5:32 pm

It is nearly a year since I posted this query about visual problems. I am posting now because I am yet again taking out a mortgage to buy new glasses! Having tried bifocals I want to return to varifocals.
I have at last worked out that I need to go for lightweight, full frames with a fixed nose bridge to help minimise discomfort in my face and behind my ear, on my left side. Light coming in behind the frame and above the frame on the left side adds to blurriness/fuzziness. I am also researching len material, coatings etc to try to work out what the best options are for optimising the lens where there is optic nerve damage but visual fields good enough for driving with some loss in the top left quadrant and age related long sightedness.
I would love to hear how others have gone about getting their glasses 'right'. What has worked for you? I appreciate that no two cases are the same but I would like to hear about your experience.
Thank you
Maria
Mgh
 
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Re: Vision, eyes and visual problems

Postby Mgh » Mon Sep 26, 2016 10:36 am

I wonder if I am right in assuming that not many people who subscribe to the forum experiencie vision, optic nerve or facial nerve problems as a result of a pituitary tumour but I am interested to learn how those who do understand and make the best of the situation. Carl's description (earlier in this thread) of the TV aerial struck a chord!
After over five years of just going with the suggested glasses I realise that I often ended up with the wrong weight, size etc. I am still working on getting the 'best fit specs' this time. What an experience it has been finding the best lightweight frame of the right shape and size for me. Next is the choice and fitting of the lens. I will report back.
I know I have irreparable damage which affects my vision but I want to minimise the discomfort and maximise my vision. Can anyone share any hints on how they addressed and adapted to the discomfort and visual changes?
Mgh
 
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Re: Vision, eyes and visual problems

Postby Carl » Mon Sep 26, 2016 7:26 pm

Just you and me then!!

As it happens I have an eye check up at hospital next week. They are pretty sure my eyesight is stable and the level of optic nerve damage I have is as it will ever be. I had a new prescription last year around the time of my last post and things have been better. I have varifocals and try not to pay the earth for them, so have to choose my optician carefully. Even with the one's have have now, I find that to get just the 'right' vision I have to move my head left/right and the up/down perfectly as the focus 'field' is very narrow. When they make up the prescription you have to go for the widest 'field of view' to avoid visual distortion. Of course the bigger the field of view, the more expensive they are, so it is a compromise.

I think I paid about £350 for the pair I have on now, I have a very narrow face so the optician recommended I go for a childs frame, which worked well for me and they knew I wanted to keep costs down. I think the frame was only about £20. My old optician wanted to charge me closer to £600 all in.....

Hope you find a solution that works for you!
Carl
 
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Re: Vision, eyes and visual problems

Postby Mgh » Fri Sep 30, 2016 2:29 pm

Thank you Carl for your sensible comments. I used your experience together with my own in my appointment for specs fitting yesterday. I had my annual hospital eyes review last week and had my vision tested by my good optometrist in August. There has been a slight change. The appointment with the new dispensing optician yesterday was my most helpful experience of the last five years of such appointments. I am hopeful that the resulting specs will do a reasonable job for me!
It can't be just you and me!
If we can gather together the good and not so good experiences of others it might be helpful to future as well as present patients. I realise that the vision of some patients returns to normal after surgery. It would be great to hear from those lucky people too so we can reflect the full picture!
Mgh
 
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