UK Keratoconus Self-Help and Support Association

Hi Folks,

Yesterday I arrived at the hospital 7.30, nervous and worried about my graft which was due around 10am. Without doubt I was extremely worried and wondering was I doing the right thing, especially as I thought I had seen an improvement to my vision. I thought maybe that I was imagining it , cos I was so worried. When my consultant surgeon came to see me around 8.30 I told him what I thought. He did a rough and quick refraction that confirmed an improvement. This was unexpected. As since my intacs a year ago I have not had any real improvment,hence why he suggested a graft. It is still by far not the improvement and outcome he had expected following intacs and that I was worthy of a graft. He gave me the option to have a full refraction with the optometrists, have new specs, try to re fit a contact lens and review in a month or so, or to continue with the graft as planned.

He told me that he didnt expect any further improvement to my vision. He also remined me that I would still need to put up with all the other symptoms, halo's, tail lights, poor night vision, sore eyes etc etc and also said that if there was an doubt in my mind then we shouln't go ahead. At that point I fell totally silent - I hadnt really said much throught the refraction and discussion - and he said that obviously I have my doubts. So we agreed not to go ahead.

I then had a full refraftion with the optometrists, they issued a new prescription an I went into town and ordered some new specs. I will get an appointment for a contact lens fitting in the next couple of weeks and then see my consultant after this to review where we are.

Apart of me is relieved and part of me is wondering if I have only delayed the envitable?? I was really really worried, wondering if I was going to loose my sight, was it going to be only a marginal improvement and therefore was it worth all the pain and discomfort. Was I a chicken? Should I have just got it over and done with??

My partner has been so supportive, and assures me that I have made the right decision. But I just not sure. I suppose if I cant get away with the new prescription, that the cornea wont tolerate contact lenses then I can always have the graft, but at least I have given it another try without it.

So my question is to you all is what contact lenses should i be mentioning to the optometrists??? You see even though I was diagnosed 12 years ago and had yearly check ups with the consultant and also regualr visits to the optometrists at the same hospital, I never really knew about my condition until I found this charity and also was referred to a different hospital for intacs, so I dont really have much of a clue as to what lenses they have tried over the years. I know for sure that they were RGP's as for scleral and others that have been mentioned on this forum I really dont know if they have tried with these.

Also has anyone else had intacs that haven't given them the improvement that they had expected, or a very slow improvement? I had my intacs a year ago. Consultant put me on the waiting list for a graft 6 months ago following only a tiny improvement following the intacs.

Advice, thoughts and comments all welcome.

bye for now

Ali

No one can say if you have delayed the inevitable but at least a graft is still an option. Grafts are last resort when everything elese ahs been exhausted.

Lens technology is constantly improving so there still might be a lens out there for you. Lens fitting is as much an art as it is a science so impossible for any of us to recomend a lens, all we can do is share expereinces so you can then discuss these with your optom. I was always told soft lenses would be no good but still the hospital tried them when I kept pushing. They were prooved correct but this at least gave me information and oppertunity which lead to working on a new type of soft contact lens which is now working very well for me.

All I can really suggest is pough through this site (information pages from the home page in addition to the forum) and make a list of questions and discussions points for your next appointment. There might be other options oo that can help with the sensitivity your eye ahs due to the intacs. I am less relient on eye drops now I am on the soft lenses because a bulk of the problems were down to the RGP lens.

Good luck.

Ali

There can be no doubt that any improvement in vision is a very positive sign. I think also if you are able to achieve a good standard of vision with spectacles then that is another positive.
To my mind much depends on your best corrected standard of vision both with spectacles and contact lenses.What is your spectacle prescription?
In terms of what type of contact lens you should be wearing there are many things to be taken into consideration.
1.The prescription
2.Corneal Topography/Keratometer readings
3.Personal preferance/tolerance levels

I am assuming you will go to a trusted Optometrist or CLO perhaps even one from the referal section on this site.

Of course the longer term is unknown although many would say that we should keep it simple for the time being and there can be no doubt that a graft is a serious and complex procedure.

Regards

Graeme

Ali

Well done! I have heard of people going right to the wire, but to wait until you have been admitted for transplant surgery before registering an improvement in your vision betokens a sangfroid not often exhibited, even in these discussion strings.

All the best with your contact lens fitting. As Graeme has said, there are variables in the fitting of contact lenses, and the best person to advise you is the optometrist whom you consult.

Every good wish; you have burned no bridges but you may just have found another period of time with good vision before you need to make future decisions about a transplant.

Andrew

Thanks for the replies folks.

Gareth - I notice a thread I was reading at the weekend that you live, or lived in Darlington??? I will defo be making notes on lenses and questions to ask the optom.

Graeme - Yes I will be going to a optom with KC experience....... I havent used the high street since being diagnosed. I was diagnosed and treated at my local eye infirmary, which was then moved to the local huge hospital, for the past 10 years ish. It was a couple of years ago that the optoms/consultants at the hospital said that they had exhaused all options and that I should consider surgery. At this point I thought the only surgery was a transplant until they suggested I travel upto Sunderland for consideration of crosslinking and or intacs. It was then that I searched the www for intacs and came across the KC Group.
The right eye cornea was too thin for crosslinking and I had intacs. The left eye was moderate KC and good for crosslinking. It was decided that I should sort out the right eye and then go for crosslinking - but 18months down the line we havent looked at the left since! Something that I need to ask about at my next consultation.
The prescription they gave me yesterday is as follows:

Right Sph -7.00, Cyl=3.75,Axis 128

Left Sph -10.50, cyl+4.25, Axis 18


I only have my consultants opinion of this being a "not good" level of vision following intacs. Would be interested to hear other professionals opinions?

I went to a high street opticians to choose my specs. I opted as usual for the thinner and lighter weight and also a pair of prescription sunglasses - althoug these wont be lighter or thinner.


Andrew - Thanks for that. Maybe I have burned bridges with my consultant though??It wasnt an easy moment, believe me! I was so so scared and being totally honest thought that the improvement was something that I was imagining, especially up until Oct intacs hadnt made any difference. He was very suprised to confirm an improvement.

My head is still a bit in tatters about it all.

ali

Ali

In terms of prescription alone it does not appear to be the most complex of prescriptions. Much will depend on the topography and also your individual tolerance of different types of lenses.
I am sure you will be well looked after at Sunderland.Certainly the Head of the Optometry Department is highly knowledgeable and respected within the Optometric Community.
Keep us posted

G

Ali - I'm sure you won't have 'burned your bridges' with your ophthalmologist. From what you say, he went through all the options with you and gave you the opportunity to make an informed decision, which is exactly what should happen! So the option is still there if you do need it further down the line. In the meantime, all the best with the contact lens appt. The theory is that lenses are easier to fit after Intacs, so rgp lenses may be fine now. Alternatively, you might get better comfort with scleral lenses or with the new types of soft lenses for KC. Hopefully the optometrist will go through the various options as your surgeon did.
Anne

I'm just waiting for resident optom Lynn White to put up a post as she has done lens fitting with people with intacs and I am sure where the prescription is worse than yours.

My right lens is the Kerasoft 3 +1.25/-8.5x102 which to a layperson would appear to be in the middle of both your eyes but as Graeme points out topography will be a factor in how easy it is to fit a lens.

There is piggybacking where the soft lens has no power but acts as a cushion that the RGP lens sits on.

I left Darlington in 1989 to study in London, I do visit at least once a year but now live in the Midlands supporting both the East & West Midlands local groups plus making a nuisance of myself on the main comittee

Ali, hallo.
Good news your vision has improved. Hope the contact lens fitting works out and you can get good vision with new lenses.
as regards the graft - well, you can always have a graft in future. A graft once you've had it can never be undone.
DOn't worry about burning bridges with a consultant - I was lying on the ward floor having violently psychotic hallucinations of bashing in the skull of one, and apparently telling half the hospital about it at top volume! - and he wrote tot he new consultant saying it tones of surprise that *I* had refused to see *him* again!
Doesn't sound like you've done anything as drastic as that.
Rosemary

Hi folks,

Thanks for your replies.

Am just about over my emotional state and caught up with the lack of sleep through worrying about it all. I think I have finally come round to being comfortable with my decision, as you say its not reversible and I can always elect to have it done in the future if I need it. Everything happens for a reason - or so they say. Going ahead with the graft could have been the best thing for me but it could easily have been the worst. I obviously wasnt ready to take the risk.

Sounds like you had a very interesting time on the ward, Rosemary!

Am sure you're not a nuisance Gareth!! All I can say is a you do very good work for the group. I didnt think that my "new" prescription was all that complex, and is really weird for me to understand that it is only the corrected vision that has improved, not the unaided. When they tried contact lenses about 5 months after intacs it was impossible, hopefully now they can. If I can get back to comfortable lenses with good vision then my prayers have been answered...keep your fingers crossed for me!

The topography?? Is that what measurement is given from the orbscan???

ALi