Pain, weird eye issue, and frustration

Hi all,

It’s been a while since I’ve been here. I’ve been struggling with pain and work and I’ve tried to avoid computer screens as much as I can since my work requires I use them a lot.

I have struggled with an eye issue since about a week out from stent-assisted coiling and I have no idea what it is – and neither do any doctors I’ve seen. So, I thought I’d throw it up here and see if anyone can relate.

My overall vision is correctable with glasses and not too bad in general. My visual field test was fine. No blind spot. However, I see something in my right eye (not there when I close my eye). It is a smoky arc-shaped thing that is mostly noticeable in bright light, when my eyes are tired, and most especially with eye movement (like reading or driving). I went to the neuro-oph at Mayo and he seems at a loss and it is hard to pin down because it is hard to see unless I am moving my eye. He wanted me to draw where I see it while I see it and it just doesn’t work that way. I can stare straight ahead and I don’t see it, but then the second I move my eye BAM! there it is! I am also not the best historian because my memory is awful and I refuse to journal because I have tried that in the past with things and I am inconsistent because I forget to record stuff.

So, it doesn’t seem to be progressing after four months. I’ve had several episodes where it has gotten dramatically worse but then subsided back to baseline. When I say I “can’t see it” doctors assume it comes and goes, but I can always find it when I move my eye. It’s just the weirdest and most frustrating thing because it bothers me while reading and driving. I am a teacher and do a lot of reading/grading so it’s annoying.

Frankly, I think the doctors think I’m nuts. This whole aneurysm discovery started with a mysterious face pain. That escalated and was initially diagnosed as trigeminal neuralgia. Then it was diagnosed as hemicrania continua. Then it was diagnosed as SUNCT variant headache + sphenopalatine neuralgia. Symptoms were always on the left side and now I am having right-sided pain issues and scalp pain on top and at the temples too. I am told it is not inflammatory, but both Indomethacin and prednisone helped. The only thing being offered is carbamazepine and I am already on that. It helps but it also sedates me and I don’t want to increase the dose.

Anyway, everyone around me is tired of my “issues” and I am tired of my “issues.” Is there anyone here who has similar eye symptoms after coiling/stenting? It seems rather strange to me that it started one week after surgery right after moving a couch. Is there really nothing that does this?

Thank you for listening.
Jennifer

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I have may be not the same but quite similar thing in my left eye . But I got diagnosed , ha ha don’t remember how it’s called :slight_smile: , it’s something that connected to aging , can be fixed with laser if get worse . On the light when I move my eyes I see black dot / spot . But your neuro- opht. Would be able to see it at your check up if you have had it. I think 4 months is not long period … I understand this frustration . But I hope you find out what is it…may be one more visit to regular ophthalmologist , who knows may be the neuro one didn’t notice something …

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Hey Jennifer,
It has been a while, good to see you back.
I too have ‘visual thingies’ post craniotomy. I was told they’d settle, they haven’t. I get stars if I over exert myself, so I try not to over do it, but I also get these odd spinning things in my field of vision. A bit like looking down on top of a spinning coin. If I try and focus onto the spinning in my eye I get all dizzy. If I ignore it or don’t focus on it, it takes up my entire visual field, left and right.
The ophthalmologist can’t see anything and blames neuro. Neuro can’t find a cause and blames my eyes. "Frankly, I think the doctors think I’m nuts. " OHH DON’T I KNOW WHAT THAT’S LIKE!!! I too have been given every diagnosis known to man, from neuralgia to dental to optical to psychological. From nerve pain to cervical dystonia to auditory issues. I’ve seen all of the specialists recommended and still I have no definitive answers.

Jennifer, I have now gotten to a point where I have learnt I have to manage all of this for me, not the dr’s. They all seem to have their own opinions and each thinks that they are right and everybody else is wrong. We are the ones living with all of this, not them, and we have to do what is right for us. Others don’t understand? well, nor do I. It’s not like we plan for all of this. My plan was ‘operate and fix’. This ain’t fixed, so now what? And I still don’t have that answer. Sorry.

Merl from the Moderator Support Team

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Thank you for sharing all that with me. It really helps. :slight_smile:

Well I can tell you I have felt that way too. But you know your own body. Maybe eye specialist. Sorry your going through so much.
FLMA you should get through your work and then take to general doctor. So you can take time off no penalized. Good wishes!:two_hearts:

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I’ve had some eye issues following the pop and the coilings. Would see some very pretty lights but they’ve mostly disappeared took a bit of time

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Oh yes, I know the feeling of being nuts! My doctors just cant find the reason for my eyes issues. I have had hemianopia, blurred vision, moving very light spots- but my annie is all right, they say. Just a little compression of the chiasma opticum. I hate these eye issues, partly because they are getting worse when I go running or swimming, and I never know what is going on in my head. I have a 32mm giant ica aneurysm, which was coiled in October 2018 and they also implanted a flow diverter. It was found because of me having double vision.

I think part of the problem is that we often go to Dr’s having the expectation of answers, but when the dr’s go through their ‘normal’ list of ailments and can’t find anything then the dr’s turn to a psychological cause. To be honest, it’s not uncommon.
My sight was one of my signs and the medicos thought I was hallucinating, ‘He must be crazy in da coconut’. And that was the answer I was given for years, so learnt to shut up and say nothing… …that was until I had a major issue and I couldn’t see. Then they investigated a bit more, found something and decided to operate.

And it’s been a rollercoaster ever since, like you, ‘I never know what is going on in my head’ and it varies from day to day.

Merl from the Moderator Support Team

Thank you for the supportive answer! I´m just about to learn to shut up and say nothing, but- may I ask- what did the doctors find so that they needed to operate.
I don´t think my vision issue is psychological, although of course I at times worry a lot…

Ask your ophthalmologist to send you to a Neuro Opthalmologist. The NO will need a complete eye exam which is usually done by your Opthalmologist or you end up having another done from what I understand.

https://www.nanosweb.org/m/pages.cfm?pageid=3279

Sorry ferret, I just realized you are in Germany…might want to try Saarland University or you may have someone local

Hey Ferret,
I’d had neuro symptoms for many years. As a child I was involved in a minor MVA, back then it was seen as a ‘Bump on the head. Bit sore, you’ll be fine’. I was having all sorts of pain, with no answers. Hospitalised and they couldn’t find anything.
IMHO It was easier to say ‘Crazy’ than ‘We don’t know…’ So, I shut up about it and got on with life and ignored the ‘odd’ things that occurred. Until 10-15+ years later and BANG.

The major issue was I was driving down the road and saw the brightest flash ever in my mirror, pulled up and within 10 minutes the centre of my vision went black, I could see the peripheral but not the centre. I called my wife, she came and got me and took me to the dr. He ordered a CT scan and found ‘a mass’. Was the mass due to the MVA or something else? Are my continuing symptoms MVA related or surgery related? No one can say for sure. So I went from it’s all in your head (psych) to it’s all in your head (physically).

You talk about the worry. You show me one person who has had to go down the neurosurgical path who hasn’t worried and I’ll show you one of two things…
…either a liar or a fool. It simply MUST have an impact on us and, yea, that can affect us psychologically. But not all symptoms can (nor should) be labelled as psych just because the medicos can’t find a medical cause. I’m living proof of that :smile:

Listen to Moltroub, you need to see a neuro ophthalmologist, someone who has not just eye info but brain info too. Follow it through. You know yourself something ain’t right and your not hallucinating, so what is it? This neuro thing can be a long arduous journey, as I say my symptoms were written of for years, until something major occurred. It turns out those symptoms I ignored were signs that shouldn’t have been ignored at all.

Hindsight is a great thing. DO NOT do what I did. Follow it up.

Merl from the Moderator Support Team

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Oh, thank you sooo much for checking!! I will have a look at the university, it’s not too far from me…

ohhh, I will think about it. I was almost feeling like a ypochondriac since they never find anything, but the hemianopia really scared me- and even then they couldn’t find anything…
Thank you very much for your story, it’s important for me to get to know how others are and what they experience.

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That’s fantastic ferret! Please let us know how it goes!

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Well said Merl :slight_smile: :heart_eyes: