UK Keratoconus Self-Help and Support Association

OK, I will try to keep this short but basically after some advice/knowledge!

Over the past 12months my eyesight has significantly worsend, and I put that down to the KC like anyone would initailly, but the 'symptoms' would appear not to be consistent with everything else I have ever read ot heard about KC.

I have constant grainy vison with white falshing lights in my left combined with facial pain on the sane side. Even more worringly is the 'hollow' feeling behind my eye and under eye 'sinus' area which bascaically feels like it is not there, and numb......

OK, sorry anyway I have been sent for MRI brain scan, visual field tests and most recently ERG tests....all have returned 'normal' and therefore my consultant has concluded all is well and see you in 4 months.

However, I am sure some of you agree when as individuals you can feel when something is not quite right with our bodies..anyway I am not sure where to go next with this and every medical professional I speak to says 'ahh well you have KC it will be that progressing' but I'm not so sure!

So.....my question is I guess is there any other eye/visual tests that may be conducted to give a more definite answer, thinking of paying to see someone private and therfore would pay for any following tests, but not sure what tests exactly may be of some use?

Thanks for any advice and expereinces,

Dave.

Hi Dave

Our symptoms appear very similar. All the tests like ERG's and MRI's come back inconclusive.

I last saw my consultant in December and i drew my symptoms on a piece of paper for him because am still yet to see a test result that actually replicates what i am seeing. I find my fields alter throughout the day and parts of my vision dissappear kinda greyed out and very fuzzy.

My consultant reckoned my more recent visual loss was due to a neuralogical issue posterior to the optic tract. The acuity in my right eye is 2/60 and my left is 6/30 he went on to explain where there are two massively different images the brain cannot make sense of them and gets confused. Im still waiting for my next moorfields appointment so he won't tell me more till after that.

Ill let you know if i get anywhere

Drew

Yes it does sound very simliar Drew.

Mine has continued to worsen over the past 12 months and I have had to push hard for the tests that have been done to be conducted.

I am sure my consultant thinks I am an absoloute hyrecondriact (spl) but truth is I had never been to my GP or a hospital consultant until I was diagonsed with KC 2 years ago.

All I seem to get is my pupils dilated and my eye checked over, but I have a feeling the problem is not there!

I would be grateful if you kept me in touch Drew, I see my consultant next week to discuss the ERG results, which I know to be normal as he wrote to me over xmas to say this.

I am getting a bit peeved with the whole thing now as it seems that all avenues have now been exhausted, hence why I asked if anyone was aware of any other tests that knew of.

Your consultants theory may have some credability as my right eye is a 'lazy eye' since birth and therefore the visual acuity is such lower than the left eye.....

I'll let you know what is said on Thursday.

Dave.

I used to get hadaches and flashing sparky lights almost like stars before the eyes! I put it down to stress, but when I took my glasses off, it was better. Your suggestions would confirm my experience, glasses corrected one eye, but due to drastic changes in the right glasses made that image worse, the brain could not compensate and this was confirmed by my specialist once I said headaches start at the back of the eye.

No glasses meant to blured images which the brain was happy with so no pain or headaches. Now I have RGP lenses on both grafts, no problems at all, not even when I have good sight in one eye and no lens in the other. My conclusion which might not seem far fetched to the people here is that my brain has been re-educated so that it only processes the sharp images and 'switches off' one eye that has the poor vision!

As soon as I new glasses were the problem, I only wore them when I had too prior to getting the lenses, but whole process has been about 4 months to re-educate my brain.

Regards

Dave

My left eye functions as a lazy eye due to Optic Nerve Hypoplasia (under development of the left optic nerve and retina). Pre KC my right eye totally dominated my left making me monocular. Now because both eyes can only produce poor images i have binocular fusion without steriopsis.

My old consultant was very unhelpfull and had made up his mind that i was faking it. He even sat me down and asked if i had all my faculties and if everything was alright and wanted to know if anything was troubling me.

New consutlant instantly said 'neurological problem' and seemed to have some sort of understanding but couldn't put his finger on why. As of yet.

Hope this helps and keep badgering the medics no matter how dissallusioned they make you feel.

Drew

Hi Drew and thanks again for the reply.

Well we sound very simliar just the opposite way round with our eyes!

I was born with a squint in my right eye and it was operated on several times, quite poorly I am now told when i was very young. The result I am told...some how is a lazy eye. Even when the KC started it was'nt an issue as I would only where one lens in my left eye and notice no difference to before.

Worry is now the left eye is getting so bad and I can't, like you rely on the other ey eto get me through!

I was interested to read that you have 'binocular fusion without steriopsis'...thats a new one on me! How was this diagoinsed (spl) and what exactly does it mean for you?

Cheers Dave..last day oof work ;o(

Hi Dave

I should have two separte fields of vision. My right eye should give me full field and my left should give me a small cresent of vision on the far left thus giving me two separate fields. I seem to rememeber the field loss because of my nose and duff optic nerve was called a temporal and nasal wedge because of the shape and intrusion into the field.

The binocular fusion was picked up with the opthalmologist gettting me to follow his finger at about a foot from my nose from left to right. I wont get steroposis because the huge difference in acuity between the two images that my eyes generate.

Ive been reading up on a few subjects recently they may or may not be of help. They are Amblyopia, Anisometriopia, Binocular fusion and steriopsis.

Have fun

Drew

Thanks for that Drew.

Over recent times my eyes seemed to have developed their own seperate images, where in the past they merged as one.

This is noticeable as when I look at items in the distance, anything close goes double and when looking at things close, all behind goes double...this was never the case?

You mentioned the 'nose' shape etc, did/do you by chance get any pain around the nose/sinus area cause it feels like mine is 'breaking down', if that make sense with little resistence/pressure if I touch around my eye and under my nose....

I will have a read up on the subjects you mentioned.....any suggested websites??

Off to consultant tommorow so will see what he has...or indeed has not to say!

Cheers,
Dave.

Hi Dave

My visions too bad to tell if i get double images or not. I do get eye pain all round the sockets of both eyes I don't know if this is sinus related or eye related. Sometimes if feels like my eyes are being cushed bit difficult to explain it exactly.

Best tip i can give your for the consultant is draw on a piece of paper what you are seeing. The day i did things started to move forward dramatically for me. My old consultant was looking at my symptoms with blinkers ie, i complain of field loss he tests for glaucoma, i complain of flashing lights i get tested for retinitus pigmentosa, and becasue i don't have any of the classic signs of visual failure there is nothing wrong with me because he hasn't got a text book that descibes my symptoms.

Good luck with the consultant.

Drew

Well been to the consultant today..tried to explain all the 'things' i am experiencing and......I get a prescription for some celluvisc drops.

I am not even going to get it as I have had these before and know fine well what they do..which is great but feel my problem is a little more rooted than a few celuvisc drops in my eye each night at bedtime!

His explantion for the pain, flashing lights and general vison disturbances was basically, KC will cause changes in my vison which will differ in each eye......ok know that one...

and the flashing lights....thats the 'floaters' I have stimulating the retina?? yeah but like all the time!

the pain is my eye lid pulling at the front of the eye when I open it on a morning...hence the celuvisc?

Oh well,,,,,,,I will do my own reasearch like you Drew and get onto the case!

Dave.