All of us Vs Keratoconus

Members Login
Chatbox
Please log in to join the chat!
Post Info TOPIC: Crosslinking and INTACS - New Member


Member

Status: Offline
Posts: 8
Date: Sat Aug 11 7:05 PM, 2007
Crosslinking and INTACS - New Member
Permalink   
 


Hi All,

As a new member, from the sunny south coast of the UK, with a relatively new diagnosis of KC, I thought I would share my experience and choice of treatment to manage the condition.

I am 34 and up until a year ago, had perfect vision and never needed any form of correction. I then started to notice that things were a bit blurry in one eye. I thought it was just a bit of bleary eyedness and after constant rubbing thought I'd best go to the Optician. I was given glasses and told I had developed a slight astigmatism. The glasses never worked and after 5 trips to the Opticians, (who became increasingly annoyed with me because they couldn't correct me), eventually sent me to the hospital, suspecting KC. The NHS Consultant confirmed it and I was totally shocked. It wouldn't sink in and I couldn't bare the thought of contact lenses. I was told by the NHS that the was no other treatment available and if it became too bad a transplant was the last resort.

I decided to research this further on the internet and discovered Crosslinking. All the reports I read appeared very positive and I desperately tried to find somewhere I could undergo the treatment. As my KC seemed to be progressing rapidly, in months, I decided there was nothing to lose and found a private surgery in London that provided the treatment. I was given complete confidence in the procedure and the surgeon and underwent C3R in Novemeber 2006 in one eye, one week after diagnosis. The operation was minor and I am so pleased I had it done. To date, progression seems to have eased/stopped. In April 2007 I decided to have INTACS put in the same eye. A month or so after the operation, my eyesite improved dramtically, but now it has settled, my vision is similar to how it was when I was first diagnosed. However, the cornea has flattened and the astigmatism reduced by 2 points, so they would make contact lense fitting easier.
Shortly after having the INTACs put in, the surgeon suspected KC may be present in the second eye and gave me an ORB scan. This showed the cornea steepening at the back, although it had not effected the front of the cornea. I was back a few days later to have crosslinking in the second eye.

I have continued to attend NHS appointments, just in case I do need a graft one day. I am shocked at how little the Consultants know about the condition and I'm afraid to say it is very concerning for the people with KC that completly believe what they are told on the NHS and do not research alternatives. On my appointment last week, I waited 2 hours for a booked appointment, then when I was eventally seen, it was a different Dr. to previous, so she wasn't really interested. On first examination of my eyes, she said I didn't have KC, then realised I did. I was then sent for topography a second time because she didn't see the earlier printout attached to my notes. She didn't comment any further and I left. I am so relieved I've had treatment privately because the NHS cannot be relied upon for KC, in my experience.

My good eye has almost recovered to how it was before and no correction is really required. My bad eye, with the INTACS is not great, but as it still seems to be settling, I choose not to use contact lenses or glasses. My good eye gets me by at the moment.

Regards
Louise

__________________


Senior Member

Status: Offline
Posts: 143
Date: Sun Aug 12 7:00 AM, 2007
Permalink   
 

Welcome Louise, thanks for sharing you story, its sounds like a lucky kind of story where if you was distracted during that time before your diagnoses, for what ever reason then you may have got sucked in to the system... not knowing the choice there is in Keratoconus. This choice varies from place to place mostly due to slow progress, and this slow progress is due to there own fault not ours. Basically they have just woken up and are dragging there feet, change is not liked, mostly from those who will not benefit that much in any way or form, or most commonly due to "them" being spine-less and penny pinching.

Its good to meet someone who is up on top of the information and it can be seen from your very first post!

Please feel free to post, you have now joined the Keratoconus free masons!smile



-- Edited by Kane at 22:29, 2007-08-12

__________________


Phase Two

Status: Offline
Posts: 479
Date: Sun Aug 12 10:26 PM, 2007
Permalink   
 

Hi Louise buddy!smile

What I picked up from your post was the fact you got both eyes done, which is a good thing to do, because KC do effect both eyes to various extent in the vast majority of cases. This is important.

Good to see you post and please write when you can! One time stories like yours where KC was stopped in its tracks when it was running rampant was unheard of, the fist story of that happening through science was here! (No where else!)... there are ways to beat Keratoconus as you found out fast, which you must be congratualated for, that learning curve wassomething else... it the least invasive first... which is the only way it should be...

Every good wish



-- Edited by QuintriX at 16:12, 2007-08-13

__________________


Optometrist

Status: Offline
Posts: 67
Date: Mon Aug 13 1:40 PM, 2007
Permalink   
 

All sounds like good news Louise - best wishes and good luck for the future. Unofrtunately NHS services vary hugely not just from hospital to hospital but from doctor to doctor, surgeon to surgeon. Some are, I'm pleased to say, better than you have described (but then, unfortunately, some are worse).

Again, all the best
Alan

__________________

We all love Leeds!



Member

Status: Offline
Posts: 8
Date: Mon Aug 13 7:48 PM, 2007
Permalink   
 

Hi again guys,

Hopefully the C3R will stop progression, but they think it'll only hold for about 5 years. Not sure what will happen then! Perhaps the artifical corneas will be available. What a relief that would be.

I'm sure NHS services vary considerably, but I would have thought all eye consultants should be aware of new developments. This would seem particulalry important when options such as C3R and INTACS, that have been around for at least 5 years, could seriously help KCers. The Consultants I visited had hardly even heard of these options! I think they should at least advise patients, that even though alternatives are not available on the NHS, they are out there.

Cheers
Louise

__________________


Optometrist

Status: Offline
Posts: 67
Date: Mon Aug 13 10:19 PM, 2007
Permalink   
 

I couldn't agree more - that they should know of these possibilities and definitely give them as a suggestion to KC Patients. Unfortunately as you mentioned some only learn what they need to learn or what would financially benefit them (as could be said of all walks of life) - rather cynical and thankfully infrequently the case. Speaking for myself cross-linking was never mentioned as part of my Optometry degree (2002-2005), neither were INTACs - these are things I came across 2 years back through personal research and have only learnt more on again through personal research - this has never been taught as part of any of my education or mainstream CET.

-- Edited by lad_from_leeds at 22:20, 2007-08-13

__________________

We all love Leeds!



Phase Two

Status: Offline
Posts: 479
Date: Tue Aug 14 12:54 AM, 2007
Permalink   
 

Hello guys, good to hear from you all (And LFL... there are some real angles that work for the NHS... my god they wear me out just watching them at work! on the few times I have witnessed there mission in life!... things have improved a lot generally... thats with one hell of an (bad) experiance some years back, which i can't bring my self to even talk about)

This is important ...beause:

1) With Corneal topograghy it is said KC is about one in 450
2) KC is diagnosed when its too late and a noticable cone is present (no Corneal topograhy used)
3) Anything one in 500 is said to be common.
4) Eurodis (EU rare disorder Org.) conciders anything more than one in 2000 rare
5) All thinning disoders should be classed as "Primary corneal ectasia"
6) "Secondary corneal ectasia" happens because KC was not diagnosed before laser surgery (or too much tissue is removed)
7) With Orbscan/pentacam KC detection is even higher
8) if KC with Corneal Topography is around one in 500... THEN... there is one in four chance of progression (if we consider one in 2000 with out Corneal Topograghy)
9) there has been just repeated info. taught year in and yera out about KC, which is out0dated... look at the more than 100 years of PK grafts and they are a "success?!" (then whats the problem??)
10) lots of people have astigmitisum... KC is routinely confused as just "astigmitisum"
11) in certain ethic populkations studies has show 4.4 times more KC
12) people with Downs syndrome... have one in ten chance of KC
13) Family members of Kcers are said to hae one in ten chance of KC
14) there are "clusters" in isolated regions, like trinidada, new zealand where the prevalance is higher than what people think.
15) Hard lenses can aggervate the condition (and they are for part time vision)
16) The health care costs (In emotions, time and money) are disportionately too high (its bungling attempts at correction vision!, there is no best way...if not caught early...prevention is better than cure!)
17) Around hospital Contact Lenses Departments... it is crowded!
18) I could go on and onsmile

Still people out there think they know ("oh its a rare condition"! (and we keep telling them!)

An just to set therecoder straight... Rabbits showed that KC come back after five years in studies... there corneas are not the same as human corneas (they are thinner)... but humans treated with in the guidelines the streghtening has continued and its thought as we age our body's natuarally crosslink, so no "top up" treatment is required.

The Ocular Responce analyser can measure the strenghth of the cornea and monitor it.

All the best

__________________


Veteran Member

Status: Offline
Posts: 51
Date: Thu Sep 6 1:13 PM, 2007
Permalink   
 

Dear Louise

Thanks for telling us about your personal experience with CCL and Intacs.

I don't know too much about Intacs. But from what I have read in research papers is it does stabilize pretty well. I think there are more long-term results regarding Intacs than CCL.

The problem with today’s medical science and practice is that we are only treating symptoms and not the underlying cause of these symptoms. Crosslinking, perhaps artificial corneas etc. etc. are only treating the symptoms and not the underlying cause.

To eradicate this disease we have to turn our eye towards stem cells, genes and so on. But this is not going to happen in my life time, I'm afraid. There are many more diseases out there which are much worse than KC and should perhaps be treated first?

I would say we are pretty lucky that we are getting so much attention and research on KC at the moment.

Best regards, Jan



-- Edited by Jan84 at 13:15, 2007-09-06

__________________
1 2  >  Last»  | Page of 2  sorted by
 
Quick Reply

Please log in to post quick replies.

Post to Digg Post to Del.icio.us

www.kcfreedom.org

Knowledge Works