hello advice please ... I think I put this in FAQs by mistake!

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mrpetethomas
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hello advice please ... I think I put this in FAQs by mistake!

Postby mrpetethomas » Fri 14 Jul 2017 7:25 am

I am 61 with Keratoconus and finding my eyesight deteriorating (R -14 +5 170 L -13 -6 17.5) I have recently tried Scleral lenses and found them uncomfortable and impossible to remove. I wear glasses and normal gas permeable contact lenses. I cannot drive at night or wear sunglasses on sunny days and can only read under a bright light,
So should I put up with this or should I try surgery Corneal rings corneal transplant etc? I have been quoted 8k by accuvision for the whole treatment.
What is the experience of other older members? Is this a good price where can I get independent advice (I am suspicious of private surgeons selling operations)?

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Anne Klepacz
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Re: hello advice please ... I think I put this in FAQs by mistake!

Postby Anne Klepacz » Fri 14 Jul 2017 3:17 pm

I'm not clear from what you say what the quotation was for? Was this for corneal rings or for transplants - I can't see that you'd want to do both? Do you go to a hospital eye clinic for your lenses? If so, what does the consultant there say? The trouble with surgery is that there's never a 100% guarantee that it will solve all the problems. Corneal rings work for some people but others have had to have them removed because they caused more problems. And corneal transplants won't necessarily help with night driving though they usually improve the vision quite a bit. But most people still need contact lenses for best vision even after a transplant. If you're not currently in the NHS system for your KC, then your GP could refer you to one of the big city hospitals that see a lot of patients with keratoconus for a more impartial opinion on the pros and cons of surgery. And if you'd like our information booklet on keratoconus which covers the various options available these days, do e-mail me your postal address anne@keratoconus-group.org.uk and I'll send you a copy.

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Bulls Eye
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Keratoconus: Yes, I have KC
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Re: hello advice please ... I think I put this in FAQs by mistake!

Postby Bulls Eye » Fri 14 Jul 2017 11:07 pm

Sorry to hear about your progressing KC, further evidence in my opinion that the chance to take up CXL should not be age discriminating. Like me Pete your further proof that the old chestnut stated here that KC stabilises and does not normally progress beyond 30 is to be treated with caution. The outcome possibilities of KC is akin to the lottery - every case is different.

if you cannot manage to see adequately to be able to function with contact lenses then non invasive or invasive surgery is the next stage. There are no guarantees with a corneal transplant or how long it will last and there are risks - infection and rejection. Ensure that you have exhausted all the contact lens options first by seeing an experienced KC specialist optom. I have recommended one I use in an earlier post. Also a private consultant opthalmologist who you could get advice from.

You can have surgery at an NHS eye hospital if they offer you this and you will go on a waiting list. I was on the waiting list for 12 months and had a DALK corneal transplant. The sixteen stitches were all finally removed 18 months after the operation and you cannot wear a contact lens until all the stitches are removed. It is not a quick fix solution and should be viewed as the last resort. I had no choice as I had to be able to drive to continue my career. If I was retired and not having to live in poverty I would not had chosen to have a transplant.

My vision is better after the transplant however to achieve driving level vision I have to use a semi scleral lens. I had hoped to be able to just have to use glasses as I have dry eyes and dislike wearing pieces of plastic in my eye due to the risks involved. If you are unable to remove a scleral lens with clean fingernails you can use a small plunger.

I am surprised you found scleral lenses to be uncomfortable as they are the most comfortable lenses I found to wear as they sit on a pool of liquid saline bridging so there is minimal contact with the lens other than at the circmference edges. Are you sure your optom was getting a good fit?

mrpetethomas
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Keratoconus: Yes, I have KC
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Re: hello advice please ... I think I put this in FAQs by mistake!

Postby mrpetethomas » Sun 16 Jul 2017 11:51 am

thank you all much food for thought

John Thatcher
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Keratoconus: Yes, I have KC
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Re: hello advice please ... I think I put this in FAQs by mistake!

Postby John Thatcher » Mon 17 Jul 2017 7:41 pm

At the risk of stating the obvious, are you developing cataracts? Perfectly normal at that age but does reduce the vision because less light getting through. However, I'm assuming your eyes have been checked recently so that should have been picked up. I'm a few years older and starting to notice them now.
As far as lenses go, I've had great success with a 'semi-scleral' rgp that rests on the limbus and doesn't cover all the eye, very comfortable and easy to get in and out.
Good luck
John

mrpetethomas
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Joined: Thu 13 Jul 2017 5:47 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: hello advice please ... I think I put this in FAQs by mistake!

Postby mrpetethomas » Wed 19 Jul 2017 8:07 am

i9 have got a referral to Moorfields so lets see what they say!


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