Vision no better 4 months after cornea transplant

General forum for the UK Keratoconus and self-help group members.

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

chris7197
Newbie
Newbie
Posts: 4
Joined: Tue 22 Sep 2015 9:28 am
Vision: Spectacles

Vision no better 4 months after cornea transplant

Postby chris7197 » Sun 23 Apr 2017 4:14 pm

Hi guys,

About 3 years ago I was diagnosed with Keratoconus in my right eye after a worsening glasses prescription. It was so bad that I couldn't read the top letter of a typical eye letter chart if my left eye was covered. My left eye has near perfect vision, which means it seems to compensate for my right so my day to day vision is great, I can read the bottom letter of the eye chart! I tried an RGP lens but this didn't make a whole lot of difference (due to severe scarring of my cornea apparently) so my only option was a cornea transplant which I duly accepted. I really wanted this as I know it's a matter of time until my left eye shows some effects and I'll be absolutely screwed if both are really bad and hard to correct (as my right one is now)

I had the surgery back in January and the surgery was a success in the sense that there was no complications and it's healed really nicely. I'm still on steroid eye drops which I take 3 times a day. Anyway unfortunately my vision in my right eye is absolutely no better. Initially I chalked it up to needing to wait but I'm seeing (pun intended) absolutely no improvement which is so disappointing and worrying to some extent.

I'm seeing my opthamologist on the 22nd of May and he mentioned if it's no better they can look at adjusting the stitches. I'm just wondering if anybody had the same poor result as me and if anyone saw improvement after having the stitches adjusted? I'm not getting my hopes up, but I feel my left is starting to get a *little* worse and I worry about how bad it could get!

John Thatcher
Regular contributor
Regular contributor
Posts: 63
Joined: Mon 24 Mar 2008 1:49 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Vision no better 4 months after cornea transplant

Postby John Thatcher » Sun 23 Apr 2017 8:39 pm

Hi Chris,

Well let's start by saying you've come to the right place for support and helpful advice and then let's give the usual advice of 'don't panic'. That may sound a bit pat but lots of us have been there and quite understand your worries which are perfectly normal. A graft does take time to settle and vision can change when stitches are removed so be prepared for that. I think the big positive you have is that the graft seems to have gone ok and healed well so you have a cornea that can now be corrected with contact lenses or specs or both. You do have to be patient until the corrections can be applied but at least it sounds like the scarring has been fixed so the prognosis is good. It might help you to know that I have a very old graft through which I can't read the top letter of the eye chart uncorrected but as soon as I put the RGP lens in I can get 6/5 vision - so please don't despair at this stage.

KC often affects both eyes but not usually to the same extent and it doesn't automatically follow that it will be in both eyes but obviously it makes sense to have the left eye checked regularly just in case. You don't say how old you are but corneal cross linking (CXL) is now fairly routine to halt early KC in a 'young' person if it is caught early so you may want to ask about that.

Please do let us know outcome of your next visit.

Best wishes

John

User avatar
Knight
Chatterbox
Chatterbox
Posts: 188
Joined: Thu 12 May 2005 1:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: classified

Re: Vision no better 4 months after cornea transplant

Postby Knight » Mon 24 Apr 2017 4:29 pm

Yes, I've had a transplant as well - Left Eye DALK - approximately ten years ago. Somewhat like you, I developed asymmetrical keratoconus; although my right eye was pretty good, my left got bad fairly quickly. My cornea was as keratoconic as it gets, no lens or combination of lenses would fit, and I had no option but to go with the surgery because the eyesight in that eye was around 6/60 unaided.

Directly after the surgery the sight in the left eye only reached around 6/48. I had 26 sutures, one snapped a week later, but I noticed my eyesight got a little better. Within a five weeks, all the sutures had to be removed, and again, there was a slight improvement in eyesight. For me, it was an exceptionally emotional time and, beyond various wild moments, at such an early stage, the transplanted tissue, the IOP, the meds, the suture tension, and so forth all cause rather crazy fluctuations in eyesight. I had to keep telling myself that everything needed time to settled down and heal. Of course, it is all quite subjective, but It's extremely unlikely to get any worse physically. The preoccupation with hoping to obtain better eyesight versus the near monotonous reality during healing of not instantaneously obtaining better eyesight isn't something much of the literature covers, but please do take it from me - despite the varying nature of our respective surgeries - the "before and after" stories are mostly redacted accounts. Although everyone has slightly different objective and subjective experiences, the bit between the "before and after" tells a different story.

Indeed, I cannot offer an opinion on the nature of the surgery you received, nor make suggestions as to what you should or should not have done, but what I can say is this: personally, my reasons for taking the surgery had to be uppermost in my mind - my eyesight was very bad and nothing else was going to change that. Without lenses, pre-graft my eyesight was bad, post-graft my eyesight is still bad, but with one very important difference, I don't have keratoconus in my left eye any more - that for me was essential. And now, I wear a daily kerasoft contact lens and can see around 6/19; however, with a half sclera lens, I can get a shade better than 6/12, but it took a long time to get to this stage, none of which was remotely possible pre-graft.

There were days, even weeks, wherein my eyesight was far worse after the surgery. Some months I scored higher on the chart, other months were seriously depressing. Eventually though, those wild fluctuations did settle down. Just hang in there, things will improve.
Only those with KC know the hidden beauty of a Christmas Tree.

User avatar
Anne Klepacz
Committee
Committee
Posts: 2265
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Vision no better 4 months after cornea transplant

Postby Anne Klepacz » Thu 27 Apr 2017 2:40 pm

It's frustrating that surgeons measure the 'success' of a graft by whether the cornea is clear and healing well, and not by the visual outcome. But the majority of us still need correction post graft, whether that's with glasses or contact lenses. I had grafts in both eyes 30 years ago, and didn't get the benefit of them until I could wear contact lenses again. The difference was that the lenses weren't agony to wear, and gave me very good vision. I even had not bad vision with spectacles. As others have said, removing stitches will make a difference and you probably won't know the final result visually until all the stitches are out. But if it was the scarring that meant contact lenses were no use before, then things are obviously going to be very different now. So don't despair - you will get there. But you may have to be patient for a bit longer. Sadly, a transplant isn't the instant solution that some people think it is, but hopefully it will all have been worth it in the end. I certainly don't regret mine, though like you, I was bitterly disappointed initially.
And it's great that you have such a good eye to compensate in the meantime.
All the best.

User avatar
Knight
Chatterbox
Chatterbox
Posts: 188
Joined: Thu 12 May 2005 1:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: classified

Re: Vision no better 4 months after cornea transplant

Postby Knight » Mon 01 May 2017 10:47 pm

Anne Klepacz wrote:It's frustrating that surgeons measure the 'success' of a graft by whether the cornea is clear and healing well, and not by the visual outcome. ...


I cannot agree more. I think that point is an example of confusing terminology: what the medical profession focuses on versus what the patient focuses on. I really did have to find a way of managing my expectations.

Indeed, I was given the option of potentially receiving laser surgery post graft because the new corneal tissue pinched ever so slightly, as I was getting exceptional sight (after six months) via the pinhole. I know many medical professionals might balk at, and rightly so, but my eye surgeon was going to perform that follow-up procedure as well IF certain conditions were satisfied; although they weren't, it remains a potential and that's over ten years later, so there's always hope: proper optimism due to the fact that there's always new treatments and materials emerging as well.

And, as you said, Anne, although a transplant is not the instant solution many believe, it usually arrests keratoconus, if not entirely, at least significantly. Chris, for me that was key in coming to terms with the whole process because it allowed me to realise that all the associated complications with keratoconus weren't anywhere near as much of a problem as they were prior to the transplant. Making myself think in those terms actually helped me a lot, and, contextually, I became very happy with those results. I know you're at an early stage, it is frustrating, but please do hang in there.
Only those with KC know the hidden beauty of a Christmas Tree.


Return to “General Discussion Forum”

Who is online

Users browsing this forum: Google [Bot] and 51 guests