Tests to expect at a hospital referal

[joanslow]

Hello. My name is Jo and I am here on behalf of my boyfriend David, who has KC.
He was diagnosed in one eye by his optician about a year ago, and his vision has got steadily worse since then, in both eyes. He has now been refered for a hospital appointment to get a full diagnosis.
My question is this - I can't seem to find any information about what he should expect at this appointment, such as what tests are likely to be done, how long they take and whether any of them are painful etc.
David has something of a phobia of hospitals due to some family experiences when he was younger, so any information I can give him which removes some of the uncertainty of the visit would be much appreciated.

Apologies if there is already a thread regarding this - I did have a look in the FAQ forum but couldn't see anything.

Thank you very much for any help you can provide,

Jo

[Andrew MacLean]

Hello Jo, and welcome to the forum.

The precise details of a hospital appointment will vary from hospital to hospital, but some elements may be common to them all:

There may be a standard refraction: an 'eye test', if you will.

There may be a topography taken: a 'map' of the contours of your boyfriend's eye is taken with a computer linked laser device. This sounds a bit alarming, but is not.

They may want to take your boyfriend's IOP (Intra Ocular Pressure). This can be uncomfortable, but is not painful. Actually the worst bit of this for me is always when they put a local anesthetic eye drop. The eye drop stings a bit, but it means that the slightly uncomfortable feeling of having the IOP taken is removed.

Tell him not to worry: and please let us know how he gets on.

Andrew

[GarethB]

Andrew has pretty much nailed it. you spend most your time either looking at a wall and saying what letters you can see. Sitting with your chin on a ledge so the consultant can look deep into your boyfriends eyes to assess the corneal health and some will give the eye a full health check.

They might stand back and shine a light in your eye but that is part of the test.

Nothing painful unless you are sensitive to light.

Eye pressure if done correctly should be pain free.

The only invasive part if if contact lenses are required because if you are not used to them they can be a little irritating at first but they eye is very good at addapting.

Many here find it best to make a list of questions to ask and concerns and ask them up front. It is helpful if a second person can go with your boyfriend so while he is being examined a second person can take notes and work through the list of questions. It is easy to get information overloaded and unwitingly come out wondering what on earth happened and remebre nothing that was said. Notes at least give you something to go back to.

An excellent strating point is visiting the Contact US Page and register with the group. Ann will send you all sorts of information you might find useful and if you have a local group near you, you will get an invite to one so that you can both meet people with KC and get a better understanding from the patient perspective. If there is no local group near by, you will at least geta regular news letter, invites to our AGM and confrence which may also help understanding the treatment/management of KC.

Hope this helps.

Gareth

[joanslow]

Thank you all for your help.
I will be going to the appointment with him, so I can hopefully ask all the required questions! As you might be able to tell I'm a bit of a planning fanatic, so a list sounds right up my street. Are there any questions you would suggest I ask that I might not have thought of?
I will certainly try to get him to register, but if not, is it ok for me as a non-KC sufferer to register with you instead?
Thank you so much for all your support and information. It makes such a big difference.

Thanks again,

Jo

[Andrew MacLean]

How advanced is the keratoconus?
What prognosis? (if the keratoconus is very mild there may be a good possibility of well managed keratoconus that will never need any therapeutic intervention)

Will contact lenses provide good correction for the long or middle term?

Are there new therapies?

That sort of thing would be a good place to start. All the best.

Andrew

[Lizb]

Dont be afraid to ask about what treatments are available at that hospital and at other hospitals within your area?
Also what experience that doctor has got with KC.
At my hospital in the past I have seen doctors who have got no idea of what treatments are being trialled in the UK, what is available on the NHS and privately etc. I could tell one more about what is available than he knew about. that is now changing (am starting to insist i see someone who at least understands the condition and knows about developments in treatments elsewhere)and i always take my hubby with me for my appointments now. May seem strange and a bit child like but as others have said, my hubby remembers conversations we have had and asks those questions that i always forget. my hubby also remembers stuff after the appointment that i cant remember what has been said.

[GarethB]

Hi Jo,

You are welcome to register, we are here to support more than just the poepl with KC but their familly, partners, frineds, optoms and specialists and so on.

The management of KC is a team effort and so we are here to help anyone with KC or close to someone with KC.

Regards

Gareth

[rosemary johnson]

Allow plenty of time! - the NHS can keep you hours sitting about in waiting rooms waiting for different people and bits of equipment.
So take plenty of magazines, books, crosswords or sudokus, etc. NOt to mention either a big flask of tea or enough cash to get regular supplies from the cafe, WVRS, hospital friends whatever.
Can't add much tot he tests.
SOme of the machines seem tohave very bright lights which I find from quite to very uncomfortable. I'm notably light-sensitive so your boyfriend may not be worried my them.
Most of the bright lights will turn down a fair bit when one makes "OW!" noises and asks the people to turn it down please.
SOemtimes they put yellow dye in oyour eyes to stain the tears so they show up under their blue lights. These don't hurt but can run down your nose leaving yellow-stained hankies - so bring tissues not best silk handkerchief! The lcoal anaesthetic they use on me for IOP tests also has yellow dye in and they use blue light, but some people do it in white light.
SOmetimes you get people - usually nurses/receptionists - threatening to put in pupil-dilating drops. I haven't actually found any of the medics in 20-something years reckon this is actually necessary - not even in the glaucoma clinic. these can make you so light-sinsitive getting home can be hard and driving a no-no. They should warn you in advance if they want to do this - and if they don't you should expect them not to (because of getting home).
If contact lenses are on the agenda - some hospitals have their own contact lens clinics on site, so you may get referred along the corridor to the in-house team. Others "contract out" contact lens fitting to specialists who know about KC in local opticians. Neither of these methods is better or worse necessarily, just depends where you are an dhow it's been organised.
Do let us know how things go.
Rosemary

[house]

Hi jo

he will be in save hands as the others above have said, its just a little more
than a normal eye test with a little more added.....

he is in safe hands hope everything goes ok!

Allow plenty of time!

House

[crakerjacker]

Like everyone else had said - it is pain free.

They will put some local anaesthetic drops in the eye if they are going to touch it and you can't feel anything once they have been put in. Worst part is if consultant has bad breath as you get pretty close!!!! They might map his eye which is like looking into the twilight zone. Quite fun actually.

I would ask about cross linking the eye to prevent it getting any worse. Other than that, everyone else seems to have covered everything off.