DALK

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

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Moderators: Anne Klepacz, John Smith, Sweet

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Anne B
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DALK

Postby Anne B » Fri 29 Sep 2006 8:25 pm

What can i expect vision wise after my opp?

Will there be any improvment in the first few weeks or is it a long process.
I don't want to get my hopes up to much if there isn't going to be much change.

What are peoples experiences with a DALK?

Anne

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Sweet
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Postby Sweet » Fri 29 Sep 2006 8:34 pm

Hey there hun!

I know that some people have had a lot of success with a DALK sadly i really haven't. I am struggling to see 6/24 with pinholes and just about 6/15 with a lens. I could just about make this with a scleral lens, i just couldn't cope with it. Have just had the remaining stitches removed today so hoping this will get better.

Most here have said that it can be a long wait to see a good improvement so am hoping!

Best of luck with it, Sweet X x X
Sweet X x X

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jayuk
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Postby jayuk » Fri 29 Sep 2006 8:42 pm

Anne

As Sweet rightly says, it can take a while; and the main reason for this is for the layers to even out (as when they close up the cornea, majority of the times wrinkles form in the corneal layers.....its the flattening out of these wrinkles (donor over your own) that causes the visual distortion the most in DALK's....

HTH

Jay
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP

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John Smith
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Postby John Smith » Fri 29 Sep 2006 11:45 pm

Anne,

Jay's right - it can take a long time to heal "optically" after a DALK, although you will heal much faster "medically" than after a PK graft.

In my case, the front epithelial layer of the donor cornea was scraped off, leaving the space clear to grow my own. This makes the optical process even slower, but may make a better optical result eventually.

I saw my consultant last week, (6 weeks post-DALK) and I can still see not a lot without a pinhole; the topography machine doesn't see a reflection of itself yet, so won't help either.

I was told 6-12 months wait for correctable vision post-DALK. I just hope the wait is worth it.

I'm sure you'll get on just fine. Just remember that the idea of the graft is to provide correctable vision, not perfect vision.
John

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Anne B
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Postby Anne B » Sat 30 Sep 2006 12:12 pm

OK i am having serious doubts about having a DALK.
I can't help thinking that having mini ARK maybe better, as i could still have a graft afterwards if needs be.
The problem is i don't know were to start.

Anne

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Andrew MacLean
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Postby Andrew MacLean » Sat 30 Sep 2006 12:17 pm

Anne

Like you I am waiting for a DALK. Like you I am in the dark a bit about the healing time etc.

I do not thin that miniARK is available anywhere in the UK as a NHS treatment, and from posts on this site I am not sure that it is ever offered as an alternative to a graft: it seems to be offered at a much earlier stage to slow the rate of progression of KC.

All the best. I shall post my experience of DALK. Mine is booked for October 27.

Andrew
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Hari Navarro
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mini ark

Postby Hari Navarro » Sat 30 Sep 2006 5:07 pm

Hi Anne,
If you are considering mini ARK then the German forum is an excelent place to gather information:

http://www.keralens.de/

It seems that Germany has one of the larger populations of mini ark recipents. The site is in German but with the aid of a search engine translator you can usually get the idea of what is being said.

When I was deciding to have ARK the fact that I could go on to graft if need be was one of the decisive points. As has been said mini ARK is not for everyone (Its dependant on personal factors including your present stage of KC).
At the time I thought that ARK may not be as effective in KC's latter stages but wasn't it worth at least trying to salvage my own corneas prior to possibly progressing to transplant.

There is also information concerning mini ARK to be found at :

http://www.kcglobal.org

http://www.keratoconusinternational.com

It is definately not available as a NHS treatment... this is a specialist treatment that cannot be standardized. I have family that work in health care and am informed that this would not be the first time that a treatment was sidelined due to its relative complexity. I have read in a number of places that the kind of incisional surgury involved in ARK is very much relient on the surgeons skill and experience... that in the correct hands it is an extremely effective procedure.

Good luck with your research Anne,
Regards,
Hari Navarro

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jayuk
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Postby jayuk » Sun 01 Oct 2006 10:26 am

Anne

I definately give you props for thinking of another option!...as not many would...due to the limitations that we get presented with!

Maybe worth while checking out Hari's posts, and talking further?...If you know what level your KC is at or have had a Topography performed that would help also!!.....

But Id def like to point things out here...and I say this from experience of someone who went out of the UK to get the C3R treatment when ppl were merely talking about it.

a) make sure you let your eye unit / consultant know what you are doing...and speak to them about this procedure with knowledge...many may rubbish it...but if you totally understand what is involved transfer this knowledge to those that look after you than you may be able to get a better informed opinion

b) (this was something I experienced)..if anything goes wrong..and you go against your Optical carers advise be prepared for that! no one likes the "I told you so"...some may even turn you away to be treated as you have decided to go this non traiditonal route...but do explore the post procedure options with the optham who provides this treatment...

I point the above out, as these were all things I have experienced....I was advised by majority NOT to do C3R...but I did........doesnt make me right or wrong....but it bought me valuable time to recover!

HTH

Jay
KC is about facing the challenges it creates rather than accepting the problems it generates -

(C) Copyright 2005 KP

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Anne B
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Postby Anne B » Sun 01 Oct 2006 11:48 am

Thanks Jay,

I have taken on board all you have said.

Me and hubby have chatted about ARK this weekend and he is going to research it as i find reading really hard due to the ghosting i get.
I am going to make a appointment for a consultation with John Dart tomorrow, so i can get his opinoin on ARK and like you say were i stand if it doesn't work!

I really feel the need to find out more before i go ahead with the graft in November.
My biggest concern at the moment is dosh! But we can find it if needs be and if it worked it would be money well spent.

If i don't find out more or even give it a go, ithink i would always regret it,( if i didn't get good result with a graft.)

Thanks

Anne

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jayuk
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Postby jayuk » Sun 01 Oct 2006 3:00 pm

Anne

I agree with you on this.....BUT one thing I will say, is that when you speak to the consultant about both the Graft and the ARK, do get HIS stats on success from a patient Visual Acuity perspective; which he should be more than able top provide you with.....this kind of data will be more valuable as it will/should only cover the experience and ops he has performed......and I think if you can say to him/ask him..what was the visual acuity of the DALK patients say 6 and 12 months, but aided and unaided...you will have a better understanding

I will be extremely interested to see what he says about ARK....so please do let us know...or PM me if youd rather....

Jay
KC is about facing the challenges it creates rather than accepting the problems it generates -

(C) Copyright 2005 KP


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