Quicktopic posts: Aug 2002

General forum for the UK Keratoconus and self-help group members.

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Malcolm Carter

Postby Malcolm Carter » Wed 14 Aug 2002 6:37 pm

Hi, I am very new to this site and haven't read all of the content yet so please pardon me if I'm repeating well known information. However, I was told I had KC about 3 years ago when I went to get some new glasses as I couldn't see a thing anymore. First I was sent to Cardiff Hospital to who prescribed some cornial contact lenses. I persevered with these for close to a year, desperate for corrected vision, but in all that time only managed to work up to 4 hours wearing time, plus whilst in my eyes I could do anything due to the pain, constant streaming nose and the fact that they flicked out every few minutes! It was obvious that something was wrong and in the end got an appointment at Moorefields in London.

Having read about grafts, etc I was fearing the worst, but here's the good part. After a couple of visits we tried SCLERAL LENSES (hope I spelt that right). I'm only 23 but they have revolutionised my life!!!!! I can't believe how easy they are to maintain, insert, remove plus my vision is absolutely perfect (bottom row of the funny letter chart things) and I honestly cannot feel them when they are in my eyes! Air bubbles were a pain to begin with but once used to getting them in you avoid them.

No fear of driving (especially at night), no fear of them flicking out if I move my eye, no fear of them slipping off the cornia, no glasses, no fear of surgery.....no worries.

Don't be put off my the size of the beasts!

Before resorting to an operation give Scleral Lenses a go.... (you can email me at hush_carter@hotmail.com)

Malcolm Carter

Postby Malcolm Carter » Wed 14 Aug 2002 6:47 pm

Just to add a quick note..... whilst I wasn't able to leave the house with corneals and could only stand 4 hours of wear - on the very first day of having Sclerals I inserted them in under 5 minutes wore them for 10 hours to a football match and then went to a smoky dark hot nightclub until 3am......without any trouble (didn't even know they were there)! Now that's impressive.

Must say a massive massive thank you to Ken Pullum at Moorfields, you are a Saint (plus the exceptionally beautiful woman who saw me once whose name escapes me). Thank you.

Keith

Postby Keith » Thu 15 Aug 2002 10:57 am

Thanks Sue. I'm seeing my GP soon, so will ask for a referral. I've not had much deteriortation in the last 5 years so hopefully it's settling down, and i can now get a lens that works.
Will let you know

Janet Manning

Postby Janet Manning » Thu 15 Aug 2002 1:51 pm

Hi Nisah,
Sorry have lost your phone number. Please phone again - have answers to your questions. Suggest you get Ferhan to read Malcolm's entries on the discussion page today. His experience of slerals is the same as mine. It might encourage Ferhan to try. He may find that he gets significant correction with slerals. I'm sure that this would result in an instant cure to his depression.
Janet

Hi John,
Sorry to hear about the rejection episode, when you had been doing so well. Just to add further encouragement. I also experienced a rejection episode in one eye, about 18 months after the graft. I was under great stress at the time - my Dad nearly died and I had been driving a 200 mile round trip alternate days to visit. Not sure which was responsible. Fortunately I had some steroid drops at home - August Bank holiday, and removed the lens and started on them straight away. When I got to the hospital they said I had already started to reverse the situation. Have had no further trouble.

I now have my own prevention methods.(not all strictly medical!!) I don't drive more than a 100 miles a day and not this far on consecutive days. When I do drive I lubricate my eyes very frequently with 'Refresh' eye drops.
I also tell myself that there may be three of us in here (myself and the two donated corneas), but we all belong together now and that's the way it's going to stay! Maybe I'm whacky, but I've had no further trouble, despite constantly inflamed eyes until very recently.
All the very best. Please let us know how you go.
Janet

sarah marsh

Postby sarah marsh » Fri 16 Aug 2002 10:17 am

hello
just a quick note to say thank u to all who have sent me emails .they have been a massive help and the advice has been spot on!
i had transplant on the 7h of august and so far very good!
had my first follow up check up this morn friday 16th and surgeon is very pleased !
so thanks again to all and please keep emails coming !
i have informed my surgeon of this web site as it has been a great help and hopefully other people may too find support and help from everyone !
email add is starlight7723366@aol.com
love sarah

Nisah

Postby Nisah » Fri 16 Aug 2002 2:40 pm

Ian Pearson. I was very interested to read that you had corrective surgery for astigmatism. Can you please explain this to me in detail as we have been told that my son also has astigmatism which can be 'reduced' (i am not sure that this is the correct term) by laser (LASIK) and he will be able to see without the need of lenses (which he is not suitable for due to having atopic eczema around the eyes) or any glasses. I look forward to hearing from you.

John Smith. I was very interested to read your message. My son went through very similar episode as yourself - my son's complications are due to having atopic eczema and also a herpes simplex virus around the nerve around the eye which when it flares up can spread very close to the eyelid and only once affected the actual cornea when we were put on to hourly steroid drops day and night.
Help - my son finds that the various drops dry out the skin around his eyelashes (especially the drops for his dry-eye condition which he developed after his operations e.g. lacri-lube, visco tears). it gets extremely itchy and this is immediately under the eyelashes. He tends to rub his eyes in his sleep and the following morning he obviously has to pay the price for this. He has been using vaseline excessively. It does not make the itchiness any less. Now he has started to get tiny deep cuts close to the eyelids and we ended up in hospital on Thursday because the cut had got infected and spread around his eyelids. He has been put back on predsol steroid drops ( I'm not too clever with spellings). Like I said before, one step forward, two backwards for us. But we are detemined to get the better of it and learn from each set-back.

Jillian Wolfenden

Postby Jillian Wolfenden » Fri 16 Aug 2002 4:38 pm

Top Sue Ingram, Hope that your ok, aint heard from you for a while, keep up the good work and thanks for all the help that you gave me.

Ian Pearson

Postby Ian Pearson » Mon 19 Aug 2002 4:13 am

Nisah. Mr Larkin at Moorfields performeed the corrective surgery for my astigmatism reducing it from 14 to 0.5 diopters. This was done by making incisions on the left and right side of the cornes with a particulardeep cut on the outside right.I assume the surgical cuts vary from eye to eye
The surgery was necessary after the stiches were removed from my graft.. After this my vision is good with glasses and excellent with contact Lens. The down side is you only have a local anesthetic and the surgery is a bit scary. This was done in 94 and I thought was quite common.

sarah marsh

Postby sarah marsh » Tue 20 Aug 2002 5:53 am

hi there!
i was hoping someone could answer a question for me !
i have had op a couple weeks ago and at the pre op meeting i was told i would have to have stitches out,but my dad thinks the surgeon told him they dont remove stitches anymore,but im was so sure they do remove them .
if someone could let me know if they do or i would be most gratefull.
also if they do remove them how do they do it ? is it another op?
thank you
love sarah
please email me at starlight7723366@aol.com

TJStim2299@aol.com

Postby TJStim2299@aol.com » Tue 20 Aug 2002 5:59 am

Re: Stitches
I had transplant 11 months ago, my surgeon takes 1 stitch out a month. He takes a topograpty before every one comes out so the cornea heals the right way so less astigatism develops. (sorry for spelling!).
taking a stitch out is no big deal, i just have a numbing drop he then cuts the stitch and pulls it out - no pain at all and takes about 10 seconds. But your eye may just get achy for a little while when the drop wears off, apart from that its a piece of cake!

regards,

Tim Stimpson


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