Advice needed

[GarethB]

Aimlette

Please let us know how you get on and how relevent the list was to helping you. That way we know what works on this forum and where to improve. The optom list is very new.

[aimlette]

Visited an optom from the list on this site today. Very good service, very thorough. Couldn't sort me and my lens problem out, but I would still recommend them. They seems to think there may be another problem as well as the KC, possibly lenticonus , which would explain why lenses are not giving me good vision despite being a good fit for the KC. So it's back to the consultant next week and the optom today gave me details of a specialist in the area, but he only takes private cases, so I don't think I can afford that.

[Andrew MacLean]

Lenticonus is at least treatable: as I understand it they just replace your lens with a new one, as they do in the case of cataracts.

This optometry visit may just have piut you well on the road back to good sight. Did (s)he suggest a return to ophthalmologist for confirmation of the diagnosis?

Andrew

[aimlette]

They are going to send me a letter to take to my consultant next week - so they can look into the possibility of lenticonus. So back to the hospital on Friday next week.

[GarethB]

Aimlette

Thank you for the update. Sorry to hear there may be complications, but as Andrew says, on the plus it can be treated.

It is also good to have feedback on how a new part of this site has helped you.

Regards

Gareth

[kerrie phillips]

Hi i am new to the forum too and i am in the same position.
I was also diagnosed last summer and still am wearing my glasses.
I tried the soft at first which comfort wise were great but never gave me the vision.
I also then had the semis hard in the middle soft on the outside , comfort wise were not as good but bearable vision wise they were poor.
I then tried the ridgid this tues but they were intolerable. The contact speacialist said he felt they had been the last resort and said surgery is now possibley the only option. The cornea specialist said as i am only 30 and there are so many things in development at the momment he did not really want to do surgery.
Intacs are not done here at my hospital and he said a graft/transplant is a no no.
surely however there are more then just those three types of lenses, if so maybe i can take a list to my speacialist.
How ever do not feel alone i am right there with you. i felt really alone till now when i found this forum. i am so glad it exists. and am very thankful to those concerned

[aimlette]

Good to hear from you Kerrie, it does make such a difference to know others are experiencing similar things. Strange that RGPs were seen as the last resort for you and the first for me. As I understand there are also scleral lenses, piggy backing (soft lens with hard on top) as well as the types you've tried already. I have found having a second opinion very worthwhile. I don't know about you, but it feels a long and frustrating process since diagnosis. But with the help of every one here, it's an easier journey. Hope you keep in touch - our experiences seem very similar.

[GarethB]

Kerrie

There are more than just soft, RGP and Soft perm.

There is also piggybacking; wear a soft lens as a cushion with an RGP on top. There have been many here who found as you did RGP's unbearable, but piggybacking saved them from the operating table.

There are also Scleral lenses which cover the whole of the eye, bit daunting, but those who wear them say they are the best. This lemnse does not touch the cornea and due to its size, the eye lid can not rub against the edges.

In the RGP camp there are differnet styles such as Rose K, Rose KII.

Other treatment not as drastic as a graft is the C3R, but I think that is currently only available at some private London clinics.

Any form of surgery, Intacs, C3R or graft is aimed at making the corneal surface easier to correct, so glasses or contact lenses probably will still be necessary. However due to the flatter more normal surface most do find the lenses are then bearable.

Diet changes which I have posted before can be a great help, that alone took me from lens intolerance and being registerd blind in one eye to excellent lens wear.

[kerrie phillips]

The cornea specialist said that piggy backing is not an iption i will however ask about the sclerals abnd different RGP styles. Thanks
i will try and firn your diet ideas too.

[GarethB]

Kerrie,

We have had people tell patients this before without any explanation and whne the patient has pushed, they have had really good results.

I was told in 2004 I would nevre be able to wear glasses again. After a trip to the hospital seeing a differnt optom my wallet it £180 lighter for the lenses (reusing an old frame) and I make 6/6 without double vision again!

There are always exceptions to the rule!