Quicktopic posts: May 2003

[aimee.wilkes@bt.com]

Thanks Dawn, i'm going to try to get some drops today so hopefully I will be able to find them.

Glad to hear that it's not only me who receives strange looks from people when it's raining and there's me with sunglasses on !!! They do help my eyes though so i'll carry on wearing them regardless of the strange looks.
Aimee

< replied-to message removed by QT >

[Andy C]

Having just returned from hospital, Ive had rather a dissapointing morning... so far Ive seen the consultant for no more than 10mins who told me I have got KC and the only answer is a transplant....

This morning all I saw was a nurse who very professionally took all of my medical history, checked notes etc and then simply said - turn up on 31st July at 11am for the op - I didnt manage to get any of my questions answered and it seems that unless I really pester I wont even get to see the consultant again till the op itself.... No idea of the things like rejection rates, driving, getting back to work etc etc etc - can someone tell me more about any other options there may be ?

Thanks

[Ash]

hi there everyone!!

Just wanted to know if you could use Artficial tears while u have RGP lenses in???

Thanx Ash

[Dawn]

Ash

Yes you can use artificial tears with RGP lenses in. Be careful to check because not all can be. For instance Refresh Contacts or Refresh Opthalmic can be, but the thicker gel tears such as viscotears cant.

Dawn

[Tony Stigle]

Deleted by author 08-05-2003 02:35 PM

[Tony Stigle]

<b> Hi
For the information of readers who have recently found this discussion page.
This is only one part of the support groups web site. The answers to lots of the questioned asked here can be found on the groups web site at http://www.keratoconusgroup.org.uk </b>

[Andrew Bosanquet]

Hi Andy C
I am a scientist working in the NHS and very strongly advise you not to go for the op until your questions are answered. When I was threatened with a graft a few years back, I developed a list of 50 questions to ask! The Dr I saw delayed the threat and so I did not ask the questions, but they are there waiting! What about writing all your questions down, looking at them in a couple of days, revising them until you are happy, and then putting them in a letter to the consultant? Also, if you are unhappy, ask for a second opinion – ask them to refer you to Moorfields. Where do you live – there might be a good KC person nearby.
I might be cynical (but I would advise being a bit) but could it be that your surgeon needs to get his KC transplant operation figures up before (??his review on) 1 July???
Take care
Andrew B
Diagnosed 1961, Sclerals then small PMMA then RGP, now struggling with RGP

[Sue Ingram]

Dear Andy (1661), Sounds like you are experiencing and incredible 'lack' of treatment and help. I would suggest that you definitely do not go for the transplant until you have looked into ALL the contact lens options and got a second opinion. I am sure there are many others on the site who would agree with me. There are various different types of lenses that can be tried and although it can take a while to get the right ones for you, these must be ruled out before going any further.

It may well be that you do need a transplant, however, you need to ensure that none of the other options can help you first - a transplant should be considered as a last resort if you can manage with lenses; there is no going back once it has taken place.

As Andrew says, persist until you have got the answers to all your questions. You definitely should not go for an op (and that's any op) without seeing the consultant first and finding out all the pros and cons.

Sounds like you are going to have to put up a fight. Good luck and do let us know how you get on. Take care. SUE

[umbilica@umbilical.demon.]

Andy asked:
Has anyone applied and been awarded Disability Living
Allowance,does having this condition mean we are "partially
sited",

I am now registered as partially sighted. I haven't tried
applying for DLA yet. I'd be interested to hear if anyone else
has done this.

As far as PS registration goes, it does seem to vary a bit -
obviously on how badly one is affected, but also it seems to be
rather a postcode lottery as to the consultant's views. If you
try it, keep badgering. I unfortunately found myself in the
position of needing retraining becasue I couldn't any longer do
my former type of work without adaptive equipment, and the doors to the training wouldn't open without a registration number.
the DEA at the job centre just kept sending me back to ask the
medics again, telling me they would always keep trying to fob me off because they all hate having to fill in the multi-part
carbonless copy form, and I'd have to keep demanding. It worked eventually..... though not before I'd found myself in the
unfortunately position of having to apologise to Leytonstone Job Centre for the abysmal bad manners of one of Moorfields medical
social workers!!


Rosemary

--
Rosemary F. Johnson

[John Smith]

Hi Andy C,

I can't believe the way you've been treated. Admittedly, I never got to see a sclerals specialist before my graft, but I had been diagnosed with KC for a few years, and my consultant was very patient answering all my questions. She told me that I would not be suitable for a scleral because of the corneal scarring.

In my case, I was off work (following consultant's advice) for 4 weeks, and then for a further 2 weeks because of work not wanting me back in the building until I'd seen their doctor!

It's 16 months on for me, and I still have the single running stitch in place, with no prospects of removing it for another year (because it's doing so well).

My consultant subsequently referred me to see Ken Pullum at Moorfields, and I'm now (as of yesterday) the proud owner of a scleral lens for the other eye (although I need top-up glasses, so I'm not wearing it yet).

I certainly agree that you should ask for a second opinion, or at least get your consultant to answer your questions before you sign the consent form. It may well be that a graft is the best option for you, but you owe it to yourself to ensure that is the case. After all, you can always stop wearing a contact lens, or change it. It's a bit more difficult to go back to your existing cornea!

Best of luck anyway,

John