Worth seeking a second opinion? Eye related - Keratoconus

[gertrudemortimer]

I have been getting frequent migraines in my eyes for the past year or so which affect my vision I decided to book for my first ever eye test on Friday when the migraines were getting beyond manageable.

The optician suspects I may have keratoconus and I now have to wear glasses for the next 6 months to try and stop any further deterioration, if my eye has gotten worse in that time they will refer me on. She has said because they have no records to show previous eye health they cannot jump to referring me which I understand.

However I am concerned about waiting a further 6 months as the vision in my right eye is terrible and the migraines I am getting are happening at least once a day and can last for over an hour, bright sun or bright lights at work make it worse. I struggle to keep my eyes open when it happens as I find it too disorientating.

Is there anywhere I can go to get a diagnosis or is it always a wait and see approach?

I'm sure you can get another eye test. Go in to an opticians and explain you want a second opinion.

Our ds has keratosis in the left eye. He wears a contact lens which has 8 prescriptions in. It is specifically made for him.
He was 34 when it was found out. This seems the common age for diagnosis.
It's more likely in men.
Yet our DD also has it but only wears glasses and is being monitored.

I think you will find that without any comparative records, there would be a reluctance to say anything more than "suspected". Why on earth did you wait for over a year when experiencing such severe symptoms?

But if you want to try, I think you will have to pay privately, and may get you no further forward, as the first lines of treatment are frequently glasses / contact lenses (so what you have now), and other treatments do not come cheaply. Corneal Cross-linking can cost up to £4k per eye, and other treatements are even more costly. And getting a private diagnosis confrimed won't boost you up the NHS waiting lists so you would still have to wait for a referral unless you pay for private treatment as well.

I am sorry to hear your children have it. Do they have allergies? I have allergies to animals which would cause my eyes to swell like balloons and I would itch them a lot as a child when we had pets so I am wondering if that is the cause for me. I am 33 so a similar age to your ds. Do your children have it in both eyes or just one? My right eye is terrible compared to my left so I have been able to get by fine. If it wasn’t for the vision disturbances I probably never would have gone to get checked. I am worried about my left eye but hopefully it will not be affected.

@PhilippaGeorgioui know I am an idiot. I started a new job two years ago so I thought it was the lighting in there. I am on holidays from work so no lighting to blame anymore!

They said the same about comparative records. There is no point going privately.

Have you been to your GP about the migraines?

@Roomgigino I haven’t is it worth seeking their opinion do you think?

Please go to an ophthalmologist specialising in corneal issues. This needs diagnosis and planning a course of treatment. Im an optometrist . Recently I sent a girl for assessment. She now has corneal cross linking booked for September . If your optician is proficient in the management of ketatoconus then thats ok but I would be seeking ophthalmology advive

Advice. There is a very good reason why there are GP s and specialist consultants as well as optometrists and ophthalmologists

I'd say it's worth seeing the GP and asking for a eye hospital referral

@Radywardthank you, I had my appointment in specsavers I’m going back on Friday to collect the glasses and have another test to measure the curvature or something. They have been very nice she said they have to follow a process for referring on to the hospital. It’s my own fault for never going to the opticians before so they don’t have any previous results to refer back.

If I post a photo of the prescription could you tell me if you think I should seek a second opinion or wait it out? I know it’s hard to say just from the prescription.

@Radyward

They must be sure it is,but do get a second opinion. Its the corneal topography that needs mapping. Your corneas have ridges and troughs in them . They are not smooth.there may be corneal thinning in spots. I have a man who has it years had 1 corneal transplant ( old hat nowadays ) that didn't really work. Vision is blurry but well meets the legal driving limit. If you went to the hospital. They would do corneal topography and then compare yearly etc. In ireland corneal x linking is covered publicly. You send the prescription no bother. What needs to be looked at is your level of Corrected vision and topography done at intervals.ask SS do they know anywhere with a topography machine. Ultimately it would be great to be called ny your local eye hospital 1/2 a year. Once you feel in control you will feel a lot better

The hight Cyl value indicates you probably only have it in the right eye. Get the specs and get an ophthalmology review . Sending you hugs xx

@Radywardthank you so much. I love mumsnet for the skilled people like yourself, soo helpful. What does the 11 mean on the end?

That is interesting it’s covered in Ireland, I will hopefully be moving there within the next two years.

I will have a look for an ophthalmologist this week.

Have a look and see if there are any specialist opticians near you. I have kerataconus and my local optician is a corneal expert. So much so I no longer need to go to the hospital I just go to him. Hes also supplied me with soft corrective lenses rather than the hard ones the hospital supplied that I just couldn't use.

Bvd= back vertex distance. The distance between the machine/ frame which held the lenses during your eye test and the fromt surface of your eye. Used on calculating some lens powers and contact lenses

I also have it! Was diagnosed at 30 when I went the opticians with migraines that were getting worse even with me being on migraine medication and having glasses. They did scans of my eyes and then referred me to the hospital who did tests and diagnosed me. I have it much worse in my right eye and have a strong prescription in that lens of my glasses and a much lighter one in my left. I also use daily eye drops. No need for cross linking surgery as of yet :) it is manageable with glasses mine have really helped and I have no migraines now.

If you want a private opinion go to moorfields in London. I went several years ago for suspected kerataconus. It didn’t matter that they had no historical records.

Im on a lot of optometry forums and there is 'something " now more advanced than x linking. I just cant find the link - i only saw it about 3 weeks ago in an article.. I was interested as I have quite a few patients with keratoconus. Lots going on with advancements TG

Just a small additional point have you been told to avoid rubbing your eyes

Yes, as there are medications that can reduce the frequency.

Hi another optometrist here. I'm not surprised you're getting headaches with that level of disparity between your eyes....

I can understand why the optometrist hasn't referred you, we have pretty strict referral criteria (which are slightly different depending on which area you live in). If we do refer outside the guidelines, then the referral just gets rejected.

As corneal cross linking is only done for progressive keratoconus and as your corneal naturally becomes stiffer as you go through your 30's, you wouldn't be considered for cross linking anyway yet until the progression can be demonstrated.

However, having said that developing keratoconus in one eye in your 30's is quite unusual. It may be an associated condition such as PMD, or it may have started developing in the eye a while ago and just haven't noticed.

You may also find that the prescription in the new glasses is quite hard to adapt to - use them mainly for computer use and TV initially when you're sitting down. I suspect that you'll get much better vision by wearing a contact lens in that eye - these are often fitted by the hospital eye service or a specialist optometrist.

Anyway, I wouldn't do anything at the moment, except collect your glasses and try and get used to them. The scan you're having done on Friday will show the exact shape of the cornea and you can discuss options with the Optometrist then.

@booksnpepsimaxthat is promising the migraines have stopped for you since having glasses. Does your prescription change when you go for check ups or is it quite stable?

@NanaStrikesAgainthat is good to know, I live in Yorkshire but I’m sure there is someone nearby who would also be able to diagnose it if it’s possible elsewhere. I will keep it in mind.

@TheOliveFinchyes I have been told to stop rubbing my eyes I have allergies that cause my eyes to swell and be very itchy so I will have to be extra careful not to have a reaction now.

@jetlag92thank you for your comment. Yes they mentioned criteria for referral so they are pretty tied in to waiting those 6 months. If the migraines are an indicator I’d say it has gotten much worse in the last year rather than it been a slow progression but who knows without previous eye history! Hopefully the glasses aren’t too bad, the optician did tell me I will struggle with them to start with.

My prescription has stayed the same for the year I’ve had it, I go every 6 months so not due to see them for another 3 months. The level of my keracotonus also hasn’t changed in the year that I’ve been seeing them which I’m really pleased about.

the glasses took a while to get used to as it was a massive change from what I was wearing at the time, but now I can’t imagine how I survived without them!

I am very stringent on not rubbing my eyes now too.

An update - I have been to another opticians and she recommended me another opticians who have a topography machine I have spoken to them and I’m booked in on Thursday for a whole range of tests he seemed to be very clued up on everything. I’m hopeful I will get told it isn’t anything to worry about and I can relax.

I’ve had the glasses on all weekend it was hard at first but it’s getting more comfortable