Consultant basically tells me im stuck with lenses...

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munster
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Posts: 117
Joined: Sat 29 Oct 2011 7:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Consultant basically tells me im stuck with lenses...

Postby munster » Thu 26 Apr 2012 5:19 pm

Heya all.

I saw my eye consultant last week. He said that my cornea scans are up and down over the past 3 scans. Lowest being -4 and highest around -2.

I asked him about treatment, and this is what he said.

CXL: He thinks my progression is coming to an end. So CXL will be of no use. CXL can't reverse damage, only help to prevent progression from an early age.
Intacs: He doesn't like them at all. He has his own personal reasons, but didn't tell me.
Keraflex: Procedure is too new to assess its long term effects.
Corneal Transplant: Corrected vision not bed enough for that procedure.

He also added that I'll still require contacts no matter what procedure I wanted.

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Paul Osborne
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Posts: 254
Joined: Tue 11 Oct 2005 9:54 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Canterbury, Kent

Re: Consultant basically tells me im stuck with lenses...

Postby Paul Osborne » Thu 26 Apr 2012 11:30 pm

Interesting.

I don't know the ins and outs of the first three procedures but my consultant went straight for the cornea transplant on the basis that my vision was so bad and the keratoconus so obvious he didn't even need to do a topography of the eye - it was visibly that obvious. To be fair I didn't know I had keratoconus until a couple of weeks before then anyway (due to going round the houses with a load of not so good opticians) - so was kind of too late to even try contact lenses. Anyway the point that my consultant made was that a cornea graft was in his view the option that should be considered a last resort after other options had been exhausted.

So on that basis if you feel that you have doubt about what the consultant is saying, I would be inclined to get a second opinion even if that means finding another cornea specialist and paying to see them privately. To be honest I would hope that you get ultimately the same answer even if you get more reasoning and explanation - which can be reassuring. Though then may then leave you wondering why you arranged a second opinion anyway.

Not sure about stuck with contacts no matter what option you go for though, I have never had contacts and post graft just use glasses. Though it could be the case that my cornea is mostly well behaved and has been done really well that there is no need for contacts.

Anyway I hope that things go well for you. I really don't know about the first 3 options as they were not an option for me.

Paul

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Lynn White
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Re: Consultant basically tells me im stuck with lenses...

Postby Lynn White » Fri 27 Apr 2012 8:35 am

Hi munster,

Contact lenses do still usually have to be worn after most procedures but its not always so, especially, if your keratoconus is mild. I am also obliged to point out that contacts do sometimes have to be worn post graft, as they do not all restore a perfectly proportioned corneal shape post op.

However, there are contact lenses and contact lenses. Corneas that are highly irregular usually require specialist lenses. CXL now has a good track record at not only halting progression but also generally improving corneal shape. having followed quite a few patients through the procedure and out the other side, I find that some patients can eventually manage with disposable lenses and some eventually get much better vision in glasses than they did before surgery.

Also, fluctuation in corneal shape goes hand in hand with a thin, soft cornea. A cross linked cornea tends to behave much more like a normal cornea and is more stable.

CXL in combination with INTACs and other procedures can rehabilitate vision to a great extent - but this does depend on your individual case.

My advice would be similar to Paul's - seek a second opinion from a consultant who performs these procedures regularly. As most of the procedures are carried out privately, this will probably mean you getting advice outside of the NHS.

Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision

email: lynn.white@lwvc.co.uk


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