To all who have joined this forum recently

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

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

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Andrew MacLean
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Posts: 7707
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: To all who have joined this forum recently

Postby Andrew MacLean » Wed 09 Dec 2009 3:34 pm

Hello helen,

Didn't see you there! Welcome to the forum.

I am sorry that you have come now to the point where you are looking at surgery. I am not sure that anyone can answer your question about success rates, but I know that the reason for offering INTACS is that they do help to 'flatten' the cornea so that lenses are easier to fit. Sometimes they provide good correction on their own, and sometimes people who would have needed lenses can get by with glasses when the INTACS procedure has settled down.

What can go wrong? I am not sure that I can answer that question. Even googling the question "what can go wrong with INTACS?" did not produce any great amount of information. In truth, I should say that while I have heard of people who had intacs inserted and then subsequently removed, I have never heard of anyone's procedure failing to the point that they needed a graft just because the INTACS procedure had gone wrong.

Sorry to seem evasive, but I am struggling a bit to offer you any comfort. I am sure that there will be somebody along in a moment who can help you more than I can.

All the best

Andrew
Andrew MacLean

touches
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Posts: 5
Joined: Fri 15 Oct 2010 4:28 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby touches » Fri 15 Oct 2010 4:51 am

Hi all I have recently joined this forum... I am having KC for tha past 4 years and i am getting CCL done on my left eye this week.. Hope everything goes fine.. I have some queries and worries which i have posted in a thread called C3R-KC i hope this forum kindly helps me.. Wish me luck guys as i am in my final year of college and have loads to work on...

KH1977
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Joined: Wed 03 Nov 2010 6:21 pm
Keratoconus: Yes, I have KC

Re: To all who have joined this forum recently

Postby KH1977 » Wed 03 Nov 2010 6:47 pm

Hi everyone. I have been suffering with eyesight problems since 1993.

My first Optician took a look at my eyes and noticed a fatty tissue around them, he said he thought It was just that and well in 1996 during the first year off university I continued having headaches and blurred vision I decided to vist my GP who took a look at my eyes and said I dont like the look of this and sent me immediately to the Eye unit formerly dudley guest west midlands.

Numerous tests and examinations were done, I eventually had some samples taken fro my eyes and for a limited time the dreaded C word was banded abot. This screwed with my head quite badly and I ended up failing all my exams at uni. I went back and studied on a part time basis, still with continuing problems.

I worked hard and had numerous referals to thehospital as at one stage they thoughtit was neurofibramatosis which wa later downplayed as something else they cant put there finger on what it is.

I decided to go to a new optician and he has looked after me no end, tweaking and improving my glasssat first.

2006 finally had contact lenses in, they continued to cause me problem, irritable eyes continued blurring of my vision Last year my contact lens person said she had gone aas far as she could and refered me to BMEC. Bmec tried a different se of lenses which irritated the hell out of me. On the last isit the specialist said these lenses arentworking and tried a couple of others. Seee the results and the irritation she said it was not worth it. She then proceeded totell me that i needed a new eye test.

Well 2nd November 2010 had eye test and he said he has gone as far as he could ith everything he had got at his disposal. He stated that he wasgoing to wrie to my specialist and get me to come into see a specialist at BMEC. I am really concerned about this as I have had ill health including low blood pressure for a number of years Im just thinking OMG time for Grafts or white sticks.

I don't know what is best for me

I am unsure as to what support I can get ?
What advice is best so many sites different views ?
If I decide I particularly don't want to go down the graft route what other options are there put there for me. I feel like im a mushroom at the moment kept in the dark and fed shyte.
What supportcan I get with KC ? I worked quite sucessfully as IT support and network person at a busy college for a number of years. The funding dried up and posts had to be shed. I lost my job jan 1st 2008 and have not been able to gainemployment since. For a time I tried to gain employment through action for blind people. I felt that I was progressing quite well and then the dwp sent me to these jokers A4E no large print documents, nothing on yellow paper, no atempt to change equipment or deploy specialist equipment for me or other users.

The whole sorry mess has left me depressed and for the want of a better word HELP

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Anne Klepacz
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Posts: 1966
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Wed 03 Nov 2010 8:53 pm

Hi KH and welcome to the forum!
That sounds like a long and complicated story of eye problems. Hats off to you for coping so well in spite of all the uncertainties, and not letting it get in the way of work and study for all those years. No wonder it's depressing now to be without work. Is there any way you can go back to Action for Blind People for more help on the employment front? I know quite a few others here have found them helpful. And have you found the leaflets you can download from our homepage on KC and work www.keratoconus-group.org.uk/sitev3/publications.html
As for KC options, what lenses have been tried for you? There's quite a variety of specialist lenses for KC these days - the regular rgps, piggybacking (wearing a soft lens underneath a hard one), specialist soft lenses for KC,hybrid lenses (hard centre, soft skirt) and semi sclerals and scleral (which cover the whole eye). I'm pretty sure BMEC do all of these and I can send you more detailed info on the range of lenses if you e-mail me anne@keratoconus-group.org.uk with your postal address so I can send you other info like our conference DVDs which cover all the current options.
And if you're in the West Mids area, the West Mids KC Group holds meetings for members 3 or 4 times a year which you'd be very welcome at. I'm not sure when the next one will be, but it's a good opportunity to meet other people who know what coping with KC is like and can share their experiences. And there's usually a good speaker at the meetings on a KC related topic.
Just a few ideas - I'm sure others will have more. One things for sure - you're not alone.
Anne

KH1977
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Joined: Wed 03 Nov 2010 6:21 pm
Keratoconus: Yes, I have KC

Re: To all who have joined this forum recently

Postby KH1977 » Wed 03 Nov 2010 11:03 pm

Thanks for the prompt reply. No is the answer. The DWP in their infinite wisdom have decided to pimp me off for want of a better word to acarpet bagger organisation. In other words a third party provider. This third party providers help is as follows

29th December 2009 Intimidated into signing for a leafletI can't read and I told them this at the time.
14 Th Jan 2010, Telephoned by this company and the following day they sent me small print documents incapable of reading.
15 Telephoned this companys office they haven't bothered to reply to me.
18th Jan DWP manager apologised to me profusely.
27 th Janauary day no meeting, no map to read no information that i could read andno contact from them. Had to phone dwp wolverhampton to get anyone to contact me. they eventually contacted me back.
27th Excuse they made my 2 telphne numberswere transposed incorrectly onto their system. They refused to pay for my travel. They als told meto go onto the sick,

27th the icing on the cakeaskd tofill out a small print form ouldn't so they sat medown in a public area with other users and asked me personal questions, do i do drugs etc etc. No attempt to provide me with large print, or prin on yellow paper. and they failed to inform meof my rights that i could refuse to answer any of these questions.
8th February They tried to get me sanctioned and this failed.
28 February letter sent by DWP stating im un co-operative only crime asking for large print ?

In summary of this entire year A4E.
No interviews
fortnightly meeting
Plenty of threats
No meaningfull jobs. I.E they told me well they threatened me to apply for a teachers job knowing full well I aint got no teachers qualification
No job search facilities. Hell they even went as far to send me to wolverhampton way way way of the beaten track for me. I got to attend or i loose my benefits. Attend A4E and it's chrony provider or STARVE
Submit my CV fo them to claim that they have made itbetter not so exactly the same asaction
8.00 pound to get there by car, 5.90 by train and a 7/20 taxi cab.
OH did I mention this is paid for by the government. Courses not worth the toilet paper they written on.

Action for Blind People 2009 - dec 2009
9 interviews
fortnightly meetings
Job search carried out with help, cv improvements used by a4e, practic interviews,
Paid for travelmyself 2.30 off train at snowhill and to office

\I will contact yous hortlywith name and address

Indy virdee
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Posts: 3
Joined: Tue 16 Nov 2010 12:01 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Indy virdee » Tue 16 Nov 2010 8:33 pm

Hello

I have worn gas lens for the past 14 years, by accident i was digonised with the KC condition 5 years ago ( i dropped my gas lens in the bath sink ).

I went to my high street optician, who the gave me glass which did not help and gave me a letter for my gp. I was then sent to hospital who told me i had KC. I now attend king edward hospital in WIndsor and have a brilliant doctor, he keeps changing the fit on my lens but has told me my KC is stabilising in both eyes, i do have problems with my lens, i normaly have them in between 8-10 hours each day and try to rest when i am not working. I have been lucky so far as to my job i only need to take time of for my hospital appointments. My job consists of me using a computer all day.
But i have recently been struggling with my lens.

The problem i get is when i do not wear the lens, basic life gets hard such as watching tv reading etc.

Does anyone have a solution for when you take out your lens.

Regards

Indy

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Andrew MacLean
Moderator
Moderator
Posts: 7707
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: To all who have joined this forum recently

Postby Andrew MacLean » Wed 17 Nov 2010 7:15 am

Indy

Welcome to the forum. I wonder whether your eyes are becoming dry? Mine do, and I us clinitas soothe to hydrate them; others use products like systane, carbomber and a host of others.

Every good wish.

Andrew
Andrew MacLean

Indy virdee
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Posts: 3
Joined: Tue 16 Nov 2010 12:01 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Indy virdee » Wed 17 Nov 2010 12:28 pm

Hello Andrew and all

Thanks for your reply, what do you do when you take your lens out.

Regards

Indy

User avatar
Andrew MacLean
Moderator
Moderator
Posts: 7707
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: To all who have joined this forum recently

Postby Andrew MacLean » Wed 17 Nov 2010 12:45 pm

I clean and rise the lens and store it in total care.

I flood my eye with soothe.

At night I spend five minutes or so under an eyebag (a velvet bag full of flax seeds that I have warmed in the microwave).

Sometimes I put in a gel to keep my eyes lubricated through the night.

Andrew
Andrew MacLean

Indy virdee
Newbie
Newbie
Posts: 3
Joined: Tue 16 Nov 2010 12:01 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Indy virdee » Fri 19 Nov 2010 11:16 pm

Hello Andrew and all

Please advise were to buy a velvet eye bag as i have been to most shops in my local high st.

Also how many times can you use the same seeds for.

Regards

Indy


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