Brain Aneurysm and eyesight probelms

[Cleo101]

After a SAH I had an aneurysm coiled 13 years . All went very well. However some years later I noticed I was getting double vision and a droopy eyelid. The doctors think that the coil may have damaged the 3rd cranial nerve. There doesn't seem to be much that can be done. I "equalise" my eyes through keeping my chin up (literally). It gets me down but I know I got off lightly. Have others had this sort of problem with their eyesight? Is there anything that can be done about the situation?

[EVC70]

I have 3rd nerve damage because of size of anurysum. Had new glasses the other day eyesight is much worse than befor the anurysum. The droopy eyelid sounds like you also of palsy like me.

[Cleo101 in reply to EVC70]

HI EVC - thanks for reply - sounds like it is not an uncommon problem. Is your droopy eyelid palsy permanent?

[EVC70 in reply to Cleo101]

For about 3-4 months l could not open lid at all. Itnow closes on its own, I get a funny sensation in my left side and I know that eye lid is going to close and the left side of my body goes weak. My family & friends say when eye lid starts closing they know I'm tired.

[ducky9]

Hello...yes I have permanent double vision...my anuerysm sits in between my 4th and 6th cranial nerve...luckily not my third as well. I could cope initially with horizontal double vision but two years later the vertical double vision kicked in and I kind of lost the plot a bit. I've suffered a great deal but finally got a occluding contact lens made for my right eye. Stops the sight in that eye and has taken some getting used to but I've managed to get my life back. Speak with your opthomologist at the eye hospital. Good luck..I fully understand your frustration. Lynne

[Cleo101]

Hi Ducky

Just been looking at your previous posts. I am new to this site and hadn't seen all your previous posts about this subject. Thanks so much for replying. I see you have been through a huge amount of pain on this. I too have the "real" issue of double vision and the discomfort of all that, plus the "vanity" issue as well. My eyes were always my best feature. I actually used to have people stop and tell me how pretty they were. And now of course.............. Yes there are worse issues of course but its still a loss as you know. I am sorry you got some grotty comments before on this. I do understand where you are. I am interested in your occluding lens. Might get to that. I think for the moment I might become one of those people who wear sunglasses indoors and out and at midnight. I am so much more comfortable in them. Also I find I like to "socialise" by walking with my friends - much better than looking at each other. Good luck I am pleased you have something that helps you. And thanks for getting back to me. xxxx

[ducky9 in reply to Cleo101]

Hi Cleo, ive not posted much for a while. Yes I had some negative comments but the chap did apologise and to be fair I was feeling very sorry for myself back then so took it very hurtfully. So yes things for me are much improved...I wear frosted glasses some days, sunglasses are great with a frosted lens too but to get me back to work I had to get the occlusion lens made or I wouldn't have been able to fly as crew anymore. I'm on a phased back to work and should return to flying by september. The lens is brilliant, I have had to get used to it and I do find after a few hours it starts to hurt but it's the best of a bad solution so I'm working with it. The only thing I can't master still is night driving, .its terribly daunting only being able to use the one eye in pitch black. But yes I highly recommend it. They made it to the colour of my eye so you can hardly tell which has given me back my confidence. (That glastly eye patch was just too much for me to deal with!) I, like yourself had lovely eyes so yes it's been a kick in the teeth to have my best feature flawed but I'm so grateful things are getting better for me. I hope this has helped further...Please get in touch if you want to talk, its terribly lonely and depressive at times when you look fine from the outside but inside your whole world is disstorted. Kind regards Lynne

[Cleo101 in reply to ducky9]

Hi Lynne

I am managing at the moment keeping my head at a tilt although it is a pain in the neck - literally. I go through phases of being very self conscious and then other times I "forget" about it. I am in the conscious phase at the moment. I remember at school we had a teacher (a nun as it was) who had an eye that did not move in sequence. Gosh how we used to make fun of her. And I can't help feeling that this is what people do to me!! Karma...... A few weeks ago I was at a dinner party and had a pleasant but drunk man next to me. Out of the blue he said "You shouldn't worry about your funny eye - it adds interest" WTF to make of that!!??? I haven't met anyone else with an aneurysm - never mind the eye problem that seems to commonly go with it. So its just nice to meet you and the others out there. And although there are others out there far worse off - its tough and exhausting sometimes to always have to feel "grateful" that one is not dead or more disabled. I wish you all the best in getting back to work. And well done - you have obviously drawn deep and achieved a lot in recent months. All best Cleo xxx

[shezy in reply to Cleo101]

Hope things improve for you all in the future xx

[MoiraBH]

I too have been left with a "wonky" eye. I had a traumatic, wide necked, burst aneurysm and SAH which was coiled in September 2008, at JRH Oxford. However, in January 2015, after a hard blow to the head, I developed a slow leak resulting in 3rd nerve palsy and a need for further coiling. I needed 3 blood transfusions after my femoral artery wouldn't stop bleeding too. I'm very glad to still be here so it seems petty to moan about my eye but... I know you all understand! I used to enjoy putting on make-up ...

I have a question about "strenuous exercise". I started going to classes that are really quite hard and make my face bright red with effort. Am I putting myself at risk?

I DO NOT EVER want another aneurysm....2 are more than enough.

[ducky9]

Hi Moira ...my neuro advised me to stop running which I used to enjoy. He advised the the best exercise for people with anuerysms is pilates/yoga/tai chi type stuff (nothing thst raises the blood pressure too much I guess) Just do what's comfortable for you...I know when I do too much I feel dreadful.

Kind regards

Lynne

[Cleo101]

Hi Moira

My neuro said to avoid deep sea diving - but everything else was ok. I do run and have done some half marathons since my aneurysm was coiled. I sometimes get the impression that my neuro does not have a very large sample of people in my position i.e. fit and healthy (besides the eye) survivors of aneurysms to really be able to know that much!! He in fact admitted as much - that knowledge about survivors of aneurysms is still pretty new and evolving. And of course each of our cases is unique.

All best

Cleo

[Jennifer53]

I had vision distortion about 3 months after coiling. It felt like the lens of both eyes had dropped to different levels. I could see perfectly well if I closed one eye. I was diagnosed with simple partial seizure then treated for epilipsy. They treated me badly in the hospital. They over medicated. Ruined my balance. Resulting in many falls. I was taken off the meds and now I'm much better. On the meds I became an old woman overnight.

[Gaia_rising]

Timely that this one popped up, I'm waiting on referrals to opthalmology and neuro... SAH drained and coiled February 2015, elective coiling of Superior Cerebellar Aneurysm March 2016, with the third Early Choroidal Aneurysm left alone, because it's too small at this stage for coiling, and in a 'risky' position, so they'll only 'go in' if they really have to.

Prior to the SAH, I'd had photosensitive hemiplegic migraines with visual aura all my life, and now my optician feels that my current visual disturbances are related to the blood supply to my retinas. After the initial haemorrhage, I slowly realised that my vision wasn't quite right, mainly 'lights' and 'spangly' flashes in my peripheral fields, but, when I asked for the visual field tests, I came out with 'textbook perfect' vision. Over time, I've 'normalised' the weird optical stuff, turning my head to read the left-hand side of a page, and spinning my chair to face people when they try to stand behind me and talk. (Makes me feel vaguely nauseous when I can only half-see the person who is talking to me, I know, it's odd.)

There was a slight change to my spectacle prescription after the SAH, and a degree of astigmatism noted, which hadn't been there previously. My eyes never really 'settled' after the first surgery, and there's been some deterioration since the second. From personal experience, I know that some of it is just my regular Autumn thing, the angle and quality of the Autumn sun always did tip me into migraine territory, having a heavy pink tint on my 'outside' spectacle lenses seemed to help a bit.

I'll 'watch this space', even if I have to keep closing one eye.

[Jette1919]

Yes, I have the exact same problem. And flashing platinum lines. My vision last week was diagnosed 20/400, legally blind but I still see, just irritating. I know how you feel. I was the picture of health. Now not so much. I've had 3 aneurysm surgeries.

[Jette1919 in reply to Jette1919]

Hi! My eyesight is now 20/400 after my brain surgeries also and I see the platinum lines all the time. Every single day. It's a hard adjustment because I was an avid reader, now I cannot read long and squint my eyes to look through my eyelashes. I to can see but it's hard to read signs and stuff. Had to change font to huge on my kindle. I've had 4 brain surgeries, craniotomy and coiling which failed and 2 different telescopic pipeline surgeries. It totally sucks and I do have issues since. They have never gone away. I dont know if I'll ever adjust. Its depressing and has been going on for years. I was an athlete and it's so hard to be fatigued so much...I just wish sometimes I could go back and be like I was. This has been going on for 3 years. Although my first surgeries were in 2005 and 2006, then one in 2017 and one in April of 2019. Those were the pipelines and after those 2, I've never been the same. I cry alot. But their are so many success stories. I envy them. I just wasn't one of the lucky ones. But I'm alive.....

[Doll55]

Hi Cleo, I had my 6mm aneurism coiled last year and still have third nerve palsy. I have permanent double so I used eye patches for a while but got fed up with making jokes about myself being a pirate! I went to my opticians who have made me an occlusion contact lens that has been hand painted to match my other eye. This is a stop gap before I have a Botox injection and surgery on my wonky eye. My eye consultant has told me that even after surgery I will still have double vision if I look for it!

Paula