Recently diagnosed

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loulou
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Recently diagnosed

Postby loulou » Wed 21 Jan 2015 12:59 pm

Hi,

For the last 3 years or so I have been suffering with what I call triple vision with my eyes, I work in the IT industry as a techie so I ignored it at first thinking that I was probably just suffering from eye strain. However, in the last year or so I noticed my eyes getting worse, my eyes seem to have mild distortion most of the time but when working on my laptop for 10 minutes or more my vision would become heavily distorted and the only way to alleviate the symptoms would be to squint (which then leads to brow headaches). I also found that watching TV, reading books and night driving also brought on severe symptoms.

So after a several trips to the opticians and several referrals I finally met with an lens specialist. This consultant ran a slit lamp test in both my eyes and confirmed (very bluntly and matter of factly) that firstly, I had a small cateract in my left eye (I'm 38)! but he then went on to say that this was not the main reason for my symptoms, he showed me a 3D image of my eyes and said I had a condition called Keratoconus and that it was in the advanced stages to the point where glasses/lenses will not help me.

The only words I heard after that were, no cure, corneal transplant required for both eyes,12 month recovery post surgery and no driving in the meantime! To be honest the consultant I saw had no empathy and seemed to be in a hurry to get home as I was the last person on the clinic list that day. I had no time to acknowledge the diagnosis let alone ask any questions. He gave me some eye drops to help with the symptoms (same drops they give Glaucoma sufferers) and told me he would arrange another appointment to see him in a few months and that he would also arrange a consultation with a cornea specialist to discuss transplant options.

Since this bombshell I have started on the eye drops and they don't seem to have helped, in fact my eyes are more blurry than before! Although I am relieved to have had a diagnosis I do feel let down by the consultant's lack of compassion and interest in my diagnosis. I feel I don't know who to turn to regarding the eye drops not helping, if I go to my GP she will just refer me back to the consultant who has a 2 months waiting list. Needless to say I am feeling all a bit lost at the moment. :(

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Recently diagnosed

Postby Anne Klepacz » Wed 21 Jan 2015 1:43 pm

Welcome Loulou, though I'm sorry you've had such a bombshell which has brought you here. I think in your place, I'd be asking my GP to send me somewhere else for a second opinion. While it's not impossible, it's highly unusual to go in a few years of not even wearing glasses to a point where corneal transplants are the only option. The vast majority of people with keratoconus can have their sight significantly improved with specialist contact lenses, which these days come in all sorts of shapes, sizes and materials. If you e-mail your postal address to anne@keratoconus-group.org.uk I'll send you our information booklet on KC and some other information. In the meantime, you're not alone so do keep asking questions here.
All the best
Anne

DavidGable
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Keratoconus: Yes, I have KC
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Re: Recently diagnosed

Postby DavidGable » Wed 21 Jan 2015 2:33 pm

To add to what Anne has said, many of us have managed full careers with the aid of specialist contact lenses and, where necessary transplants. I had my second transplant in 1995 and, at the time had a 30 mile drive to work. From memory, I only had a few weeks off work, so all is not lost.

Finding someone who understands our vision is very difficult which is why this forum is so useful. Hopefully, with the aide of the information Anne sends you, you will be able to find a good consultant to continue your treatment. If you can get to London, I recommend attending our AGM in March (date to be advised), where you will be able to talk to our committee and other members with similar experiences.

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CrippsCorner
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Re: Recently diagnosed

Postby CrippsCorner » Wed 21 Jan 2015 4:44 pm

Sorry to hear of your experiences, finding out you have any kind of condition is hard to hear... the consultants can seem really heartless sometimes, although luckily I've finally found a good one.

As Anne says, it's quite unlikely you'd go from nothing straight to the transplant stage. Personally I'd look at getting a second opinion. Also, get a referral to the NHS eye clinic to see if soft or hard lenses can help you. There's also CXL which the NHS doesn't always talk about which is quite frankly ridiculous. Good luck, all is not lost :mrgreen:

loulou
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Re: Recently diagnosed

Postby loulou » Wed 21 Jan 2015 7:51 pm

Many thanks for all your responses, it is very much appreciated and nice to know there is support out there. If I am honest when I look back at how my eyes have been I suspect I could have had KC for a lot longer, it has only been in the last 3 years where I have noticed significant symptoms and more so in the last year. I remember experiencing the halo effect as a teenager but I didn't equate it to being a problem as the symptoms back then were few and far between so I never had it properly investigated.

I will certainly go for a second opinion as the consultant I saw was unfriendly and not informative enough, I am hoping for a less invasive option from a second opinion and to know that this condition could be helped by lenses is a huge relief. The eye drops the consultant has given me are causing me all sorts of problems and I would rather not continue to use them.

Anne, I will email you my address as the information booklet is just what I need right now :-) Thanks again for your support.
Loulou

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CrippsCorner
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Re: Recently diagnosed

Postby CrippsCorner » Thu 22 Jan 2015 1:22 pm

What are the eye drops called and what are they for exactly? I've had plenty of different types and nothing's ever made my vision worse... that must be frustrating.

loulou
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Re: Recently diagnosed

Postby loulou » Thu 22 Jan 2015 6:29 pm

I have been given Pilocarpine eye drops, the consultant said they might help with my symptoms as they make your pupils really small. From the first time I took them my eyes became more blurred and I felt quite sick. There was no way I could have driven my car whilst on them. After 3 days i stopped taking them, maybe I should have persevered with them, but I have decided to hold off using them until I have had a second opinion. :-s

loulou
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Re: Recently diagnosed

Postby loulou » Fri 23 Jan 2015 4:23 pm

The main pressing question I do have is, am I legal to drive with KC? I am hearing very conflicting information, my consultant said I drive at my own risk and if I were to be in an accident I could be in a lot of trouble for not telling my insurance company or the DVLA about my KC. I don't drive when my vision is heavily distorted, but this would be hard to prove if I were in an accident. I suppose at the moment because I am not receiving any treatment for KC (apart from the drops in which the consultant said I would not be able to drive on the drops) I guess I am in a difficult position. Does anyone know what the DVLA/insurance companies stance is with people who have KC?
Thanks muchly

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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Recently diagnosed

Postby Anne Klepacz » Fri 23 Jan 2015 5:31 pm

Well, the simple answer is here https://www.gov.uk/driving-eyesight-rules
While keratoconus isn't on the list of conditions that DVLA say should be notified, we do advise people to tell both DVLA and their insurance company because the consultant is right - if you were to be in an accident and hadn't informed them, your insurance wouldn't cover you and DVLA could take away your licence. If you do satisfy the 'reading a license plate at 20 metres' and the 6/12 requirements, then you're legal to drive.
The more complicated answer is that our vision tends to vary from day to day and during the day, with night driving being a particular problem for some of us because of the halos round lights and glare from headlights. It also makes a difference whether it's a familiar road or a new route as some of us find reading signs quickly difficult. You're clearly being responsible and only driving when you feel safe to do so. But it can be a hard judgment to make because we tend to get used to our 'distorted' world. Of course, if contact lenses can make a difference for you, then driving hopefully won't be a problem.
Anne

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CrippsCorner
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Re: Recently diagnosed

Postby CrippsCorner » Sat 24 Jan 2015 12:00 am

loulou wrote:I have been given Pilocarpine eye drops, the consultant said they might help with my symptoms as they make your pupils really small. From the first time I took them my eyes became more blurred and I felt quite sick. There was no way I could have driven my car whilst on them. After 3 days i stopped taking them, maybe I should have persevered with them, but I have decided to hold off using them until I have had a second opinion. :-s


I think you did the right thing stopping then, make sure you tell your consultant what happened if you go back!


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