Recently been diagnosed, just need a little help please!

[liam82]

Hi there, a few weeks back I was diagnosed with KC and im struggling to get any kind of answers from the hospital.

Luckily, I've found this wonderful website and was wondering if you could help at all

At 28 I've never had vision problems of any kind, and dont wear glasses. But in november last year, I noticed things felt slightly off and particuarly struggled with car lights at night, and ghosting. This all came out the blue, so my doctor referred me to eye casualty who told me I had sinusitus and not to waste thier time.

So a few weeks later after the antibiotics didnt work, and it just got worse I went to specsavers who referred me back to the hospital as the secsavers fella wanted to rule out KC.

Eventually, I finally got to see a consultant, who didnt have the referral letter and was unconvinced by my symptoms...until i mentioned the specsavers guy had said he wanted to rule out KC. So he shone a light in my eye very briefly, and after making me sit outside for half hour whilst he tried,and failed, to get hold of someone else (he told me it wasnt field), he called me in and told me it was KC.
But he gave me a brief 20 second description and told me to go back to my gp for some contact lens (which my gp didnt have a clue about and said that would need to come from the consultant). He did very briefly tell me about collagen cross linking though.

Now, non of this really makes sense to me so I have no idea where to go from here.
I have spoken to a friend of mine whos an optometrist whos advised me to have the collagen cross linking procedure done as soon as possible which I'm more than happy to do.

I guess, my question is, should I have some scans or anything first? Does the referral to the private hospital have to come from my gp, or the consultant involved?

Basically, Its been absoloute hell trying to get any kind of information out of the nhs and ive made a complaint - but have only one response about 2 weeks ago. Nothing since. So I'd rather not have to get a referral from the consultant as its been hard work just raising a complaint.

Sorry for rambling on, its just im terrified im going blind as every couple of days or week or so, my sight seems to get slightly worse and i just want to move forward as quickly as possible.

Does anyone have any idea what the next thing I should do is?

Ive been told I'll get an appointment for contact lenses in a few days time, but that now was around 3 weeks ago and I still havent heard anything!

Thanks for your time, and sorry for the long winded story...but i cant stop worrying.

[Andrew MacLean]

Firstly; welcome to the forum

Secondly; take some deep breaths and tell yourself, other people live with this condition.

Thirdly, I think you may have misunderstood what your consultant said to you. do you have another appointment? If not, get in touch with the consultant's secretary and ask for an appointment.

When you go, ask about contact lenses. Ask if the hospital has a contact lens clinic, and if so ask to be referred.

if not ask for a referral to the hight street optom with whom the hospital has a contract for contact lenses.

Every good wish and always remember, Don't panic!

Andrew

[liam82]

Thank you for the kind words

The misunderstanding with consultant is probably whats causing all the problems. It was very brief, and he said it wasnt his field of expertise. Literally, at most it last 30 seconds.

He said, he was going to email my doctor and tell them to send me for some contact lenses. Now, after phoning my doctors, they were adamant they dont have an email facility and that the hopsital in nottingham does have its own contact lenses department. I did manage to get hold of the consultants med sec (i happen to work at the hospital), and asked what the next step was which is where she told me she didnt know why the consultant would refer me back to my gp as I should be referred to the contact lens dept at the hospital.
So she rang me back a day later to tell me she'd done it and I'd recieve a letter from them for a fitting appointment- but I could choose whether to do it at the hospital or go somewhere else, it was up to me. But that was the end of the phone call, and ive heard nothing since.

Its 3 weeks later and i've still heard nothing about the contact lenses, but I do have a follow up for 6 weeks time but I dont know who its with or what for. The follow up in 6 weeks time just seems so far away, particuarly when I have no idea what its following up really, as the original appointment I had was so brief and with very little concrete information.

Which is just adding to my confusion. When I did last speak to the med sec, 3 weeks ago and asked her what the next step was, she said she had no idea as the consultant was only a locum and as such didnt usually deal with these sorts of things. Since then, i've been unable to get hold of the med sec, which is why i contacted PAL's, who again i've got no joy out of.


So yeah, I just feel like I'm trapped in limbo with no way of finding out anything or moving it along.

Thanks for the advice though, its appreciated and I know I'm probably abit to eager. But my visions so unconformatable now, and I cant even watch tv without a searing headache as my right eye is compensating for the badness of left eye and doing all the work. I work in IT as well which makes it even worse.

So I'm really just keen to move it forward.

[Andrew MacLean]

The hospital clinic would always be the cheaper option; contact lenses for keratoconus can run into serious money but hospital clinics, or if the hospital has no clinic of its own the high street optometrist to whom the refer patients will dispense whatever lens you need for just over £50.

All the best

Andrew

[liam82]

Yeah, thats what i was hoping. Its just actually getting that appointment thats proving to be the problem.

So would you say thats the next step?

Other than that, should i be havimg tests to see how advanced it is and that sort of thing?

[Anne Klepacz]

Hi Liam,
Did the Specsavers guy test you for glasses? If not, it might be worth going to see him while you're waiting for the contact lens appt to come through - if your KC is mild glasses might be able to correct the vision. Or at least give you better vision than you have now. You've obviously had a frustrating time with little information which makes it harder to wait for appts to come through. But KC usually progresses slowly, so it's not a condition that needs instant action. Most people get good correction with contact lenses. Collagen crosslinking isn't a 'cure' for KC - it's designed to prevent further progression so it makes sense to wait and see whether things are going to go on changing before making a decision about that.
If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you our information booklet on KC and a DVD of our 2007 conference which covered options like crosslinking in more detail. And I hope your contact lens appt comes through soon!
Anne

[rosemary johnson]

Hallo, welcome and sorry to hear about the troubles with unhelpful NHS.
A tempted to wonder if you c ouldn't get a referral to a more helpful hospital/consultant - through your GP - but that would take yet more time waiting for appointments.
I'd have thought (and I'm not an ophthalmology consultant!) that you ought indeed to be having scans - to measure the shape of your corneas. If not, they can't tell, by doing another one later, how far or fast it is progressing.
Keep chasing up the contact lens appointment! - is there a nice person in the hospital appointments booking office who might followit up for you if you can't get hold of the med sec again?
Good luck.
Rosemary

[liam82]

Hi Liam,
Did the Specsavers guy test you for glasses? If not, it might be worth going to see him while you're waiting for the contact lens appt to come through - if your KC is mild glasses might be able to correct the vision. Or at least give you better vision than you have now. You've obviously had a frustrating time with little information which makes it harder to wait for appts to come through. But KC usually progresses slowly, so it's not a condition that needs instant action. Most people get good correction with contact lenses. Collagen crosslinking isn't a 'cure' for KC - it's designed to prevent further progression so it makes sense to wait and see whether things are going to go on changing before making a decision about that.
If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you our information booklet on KC and a DVD of our 2007 conference which covered options like crosslinking in more detail. And I hope your contact lens appt comes through soon!
Anne

Hi there, thanks for the advice and the information

Yep, he did fit me for glasses but they didnt work, and he said my right eye is fine but as I've never worn glasses or anything he didnt want to give me too strong a prescription for the left eye straight away.

When I saw the consultant, whilst I was waiting I saw another optometrist at the hospital who gave my eyes a quick test and she said there was a prescription but it was so weak it was unnessecary due to the strength of my right eye.

So again, its this sort of thing thats contributing to me being confused.

[liam82]

Hallo, welcome and sorry to hear about the troubles with unhelpful NHS.
A tempted to wonder if you c ouldn't get a referral to a more helpful hospital/consultant - through your GP - but that would take yet more time waiting for appointments.
I'd have thought (and I'm not an ophthalmology consultant!) that you ought indeed to be having scans - to measure the shape of your corneas. If not, they can't tell, by doing another one later, how far or fast it is progressing.
Keep chasing up the contact lens appointment! - is there a nice person in the hospital appointments booking office who might followit up for you if you can't get hold of the med sec again?
Good luck.
Rosemary

I've had to go through the patient liason service, but thats 2 weeks later and I still havent heard anything from them. I appreciate im being abit pushy with them, as I work in the NHS myself so appreciate things take time. But with the way the consultation went so horribly, with the consultant himself saying its not an area he knows much about....i'd like to press it so I can get either some concrete details, or hopefully referred on to a specialist.

[Anna Mason]

There are better people than me to advise on making sure you get to see the right person but dont panic. KC can be managed quite easily and there are more Contact lenses than you can shake a stick at and it is far easier to treat than Ugly the NHS still have nothing for fixing ugly people at all.

So flippancy over I have had KC since I was 12 I am now 56 (going on 25). I am an Artist (a brilliant one I should add) I garden for people I passed my Driving test at 40 and I used to regularly Compete my Horse Cross Country I have retired from that a bit as I bought a nasty youngster and discovered that the ground was a very long way down. Oh and before I became a gardening Artist I worked in IT.

So chin up its nt the end of the world believe me just keep nagging and dont worry.