keratoconus- my story, pt 3 by Wendy

3 Month Post-Op update

In my last blog post I left you at about the 6 week post-op point and since I have been suffering badly with severe dry-eye syndrome. The horrid feeling of a foreign body in my eye and at times it is quite light sensitive and to be honest it’s driving me mad I want so much to rub my eye but do resist!

First 3 sutures removed photo

The photophobia was getting worse so I tried to get an emergency appointment with the e-clinic but no joy for today so I decided to go the local A&E and wait to be seen. I waited around 3 hours and I’m seen by a nurse as they apparently don’t have any on-call eye Dr so really the trip has been a waste of time as they don’t really know what they are looking at. They tell me they can’t see anything wrong so I came home. I get an appointment for the e-clinic and I see a trainee optom who was very nice and took the time to talk to me and asked many questions. She eventually diagnosed me with Punctate Epithelial Erosion Staining (PEE’s for short) this is all connected with the dry-eye syndrome apparently. She prescribes me Celluvisc vials to be used every 2hrs.

Punctate epithelial erosions are a pathology affecting the cornea. It is also known as punctate erosive keratopathy or superficial punctate keratitis

punctate epithelial staining under slit lampSigns and symptoms

It is a characterized by a breakdown or damage of the epithelium of the cornea in a pinpoint pattern, which can be seen with examination with a slit-lamp. Patients may present with non-specific symptoms such as red eye, tearing, foreign body sensation, photophobia and burning.
Punctate epithelial erosions may be seen with different disorders:
• Dry-eye syndrome
• Blepharitis
• Acute bacterial conjunctivitis
• Trauma
• Exposure keratopathy from poor eyelid closure
• Ultraviolet or chemical burn
• Contact lens-related disorder such as toxicity or tight lens syndrome
• Trichiasis
• Entropion or ectropion
• Floppy eyelid syndrome
• Chemotherapy i.e. cytosine arabinoside
• Thygeson’s Superficial Punctate Keratopathy
The main thing is my graft shows no sign of rejection which was the main worry with some of the symptoms I was having. I haven’t found that the Celluvisc is doing much and I don’t want to overuse this as it may cause more problems. My next appointment isn’t until my 3 month check on the 19th February so I will just wait and see what happens then.
Minor mishap time!
Well for any of you that know me you will understand how clumsy I am at times. I banged my head on the sink when getting out the shower and it just happens to just above my grafted eye so I go to minor injury clinic to get checked over and everything appears ok. They tell me to come back if I feel sick or dizzy etc. Later that afternoon I have the worst headache ever and for some odd reason my ungrafted eye has very little vision so I call the hospital and they tell me to come back. They do scans and everything as by this time I have an egg shaped lump above grafted eye and its getting bigger. They diagnose it as an Oedema (Oedema, also known as dropsy, is the medical term for fluid retention in the body, the build-up of fluid causes affected tissue to become swollen. The swelling can occur in one particular part of the body – for example, as the result of an injury – or it can be more general) and give me drugs to reduce the swelling. I am kept in over night as a precaution and they give me morphine for the pain. I get home the next morning and just need to rest up.

Raising awareness for KC

It’s the start of February and I was trying to think of some way I could help raise more awareness of KC and also to promote the Keratoconus GB Group and the good work Rae & Steven do. I decided to send an email to my local paper to ask if they may be interested in doing a story. To my surprise I get a reply back the next day saying they want to talk to me to find out more. I do an interview and explain everything to the reporter, the next day a photographer came to my home to take my picture. The story is printed the following week in the Valentines Day issue. It received a lot of positive feedback and was shared via the KCGB page and Twitter feed, which was great for raising the profile of keratoconus and people living with it in the UK.

Another good thing for me to come from this article was connecting with two people that live locally to me that also suffer from KC, whom I hope to meet up with soon.

3 month post-op check up

It’s now the 19th February and I have my 3 month check up. After examination under the slit lamp it appears I have 3 loose sutures so these are removed. It appears that this may have made my previous symptoms worse as I also had a mucus build up and this was causing discomfort. The relief after these being removed was pretty much straight away and since then I have hardly needed to use the Celluvisc or Vismed. The Dr said I need to wait until next week then I can reduce my Dexamethasone drops to twice a day and just to keep using the anti-biotic twice daily as before. In December my acuity test in grafted eye was 6/24 and has now improved to 6/18 so I am very hopeful for the future.
My next appointment isn’t until the summer so here’s hoping everything continues going well!


16 thoughts on “keratoconus- my story, pt 3 by Wendy

  1. Hi Wendy,

    Hope you are doing OK and your eye is hanging in there? I have a question for you on behalf of a new blogger I ran across. Very young woman who just had a graft yesterday (now I’m saying graft!). I referred her here a while back but not sure if she spoke with you guys. I mentioned to her that I’ve had major hair loss/change in texture due to the prednisolone drops post-CXL. That freaked her out, which wasn’t my intention (oops). My derm. confirmed it all and Rae reblogged my post about it a while back. It’s still happening to me (I really am going to turn into Ms. Bigglesworth) and I’m back on steroids again (low dose) due to a small opacity–great. So, my blogger friend’s surgeon told her it wouldn’t happen–no hair loss from ocular steroids (although oral steroid cause it for sure). What is your experience with ocular steroids as you’ve gone through it all?! Hair loss?Dry and disgusting texture? I also get systemic side effects (worsening myalgias, arthralgias, insominia, night sweats, etc.). Thanks for any info you can share! I don’t do social media so figured I’d ask you here and let her know from The Expert!

    Thanks again,
    Alisa 🙂

    • Hi Alisa

      The only steroids I have taken since my graft is Dexamethasone preservative free minims & I have definitely got longer eyelashes on that side and my eyebrow is darker on that side aswell LOL. Also had a change in my hairline as in more hair. Since starting I do get very sweaty and terrible sleep pattern however I have been told none of the above can be connected to taking the drops as they are very low dose and totally different from oral steroids.

      Sorry I haven’t been much help. Hope you get the answers you want.

      Wendy x

      • Weird! Thanks, Wendy. That’s a milder steroid–wonder why we have to be on such strong ones for CXL? I’ll pass on the info. Thanks SO much for the prompt response. Btw, the sleep stuff is so steroid-related. I don’t believe anything these docs say as what goes in the eye goes in the body. I got anesthesia side effects (big time–like from a general) from the chronic anesthetic drops! Woke up a sweaty mess again today as I’m back on the steroid… Lol.

        Take care,

  2. The ocular eye drops/steroids are such a tiny dose i cnanot see how they could affect the things mentioned here other than a direct effect on the area they are administered to- eyelashes etc. Interesting discussion however

    • Hey Rae,

      I was on 4 drops/each eye and it was prednisolone, so very strong, for CXL. Had to stop at day 17. Back on another stronger one for the opacity at 2 drops/1 eye and not as bad, but the sleep/night sweats/night terrors were back within 48 hrs. See my comment to Wendy for the rest. I’m just wondering why we need so much of this junk for CXL? Well, my blogger friend had a graft so I’m passing this all on…

      Thanks and take care,

  3. Tbh Alisa the only meds I’m taking at the moment are the dexamethasone and celluvisc for the dry-eye & anything that’s wrong with me I tend to blame it on them LOL. I definitely think the longer lashes & darker eyebrow are related to the dexa steroid drops as its only my right side but as for every other thing like sweating and not sleeping well that could literally be anything.

    I have been thinking of a visit to the Dr as some of my symptoms are in line with the menopause. I have a family history of this happening early but not quite as early as 38 usually at around 42-45 and that’s the last three generations so who knows. I’m just falling to bits at the moment LOL.

    Hope your night sweats/terrors stop soon.

    Take care. Xx

    • Thanks, Wendy! Join the club–my tagline is “surviving keratoconus & a body falling to pieces,” but the latter is due to Ehlers-Danlos. I’m 38, too! Btw, I’ve read that steroids CAN cause hair growth, as well, so that makes sense in your case. They sell Celluvisc on the shelf (OTC as we say) over here and that’s benign–wouldn’t do anything as it’s preservative-free artificial tears. My non-hair loss symptoms all start right when I begin steroids and stop the day after I’m done with them. So, for me it’s all related. I get the exact same side effects from oral pred. and a doc gave me a shot for allergies once and that did me in for days. Ugh!

      I saw my dermatologist and had my GP do all my labs (my hypothyroidism is doing fine still w/levo and this is way different hair loss). The change in texture is what’s sealing the deal for me and the fact it started 9 wks after I started the drops, which is when this would show up. Apparently, the medication gets into your system and hair follicle and then travels down each hair, causing it to become very brittle, dry, and coarse. Not sure what makes it falls out in handfuls. A double whammy–especially as I already have dry and coarse (curly) hair!!! I just wish it would stop falling out. I can’t see well, but my lashes and brows seem the same (they’re thick enough!). Hard to tell as I had a bilateral procedure. Odd side effect you got, no?

      I guess you need to get your hormones checked to see if it’s early menopause. Early 40s is pretty young. Still thinking the fact that you guys get the low dose of a weaker steroid is what made the difference as far as less side effects. I’ve used dexamethasone ointment for eczema (skin) and no problems. For CXL, you need the prednisolone post-op to prevent hazing in the vision and boat loads of it. I’m also allergic to the preservatives in these drops (sodium bisulfate), so a mess of red and cracked skin under my eyes. KC really sucks!!!

      Take care and tell Rae (do you blog together–so confused?!) that she’s The Expert too, it’s just that I was running late earlier and remembered you were post-op and found your post right away. Appreciate all you guys do, as always…

      Alisa x

      • Hi Rae,

        Old comment here. So, if I leave a comment for the posts you feature that are written by others, do they get them (aside from Wendy)? I don’t have a Twitter account because I’m not into social media and I don’t have a data plan on my cell (can’t see it well enough and think you need that for Twitter), so just do blogging via the blown-up laptop. Sort of confused… Thanks! I don’t want to leave comment if no one will get them. 🙂

        Happy New Year,
        A x

      • Hi A hope you are well. The person who wrote the blog will get you comment & also Rae as she manages the keratoconus gb page. When I write a blog I send it to Rae first for her to approve & then she posts it onto this page. Hope that explains it for you.

        Happy New Year when it comes. 🙂

      • Thanks for the explanation, Wendy! I didn’t want to bother Rae with comments if not, so good to know.

        Rae–you’ve really started something great here. I love how I can get so many KC stories all in one spot via your blog. 🙂

        Take care everyone,
        A x

  4. Hi Wendy thank you for your truth and honesty.Sometimes people only want to talk about the good times.I’m going on the waiting list for a corneal graft in my right eye.I’ve tried all different types of contact lenses,sceral lenses synergised lenses mini sceral lenses,you name it I’ve tried it.I have KC in both eyes.RGP lenses work in my left but because of the advanced Keratoconus in my right eye,and the steep astigmatism,the contact lens no longer fit properly and regularly fall out when I blink, mostly without warning,I’ve lost so many lenses on the street.
    So with much anxiety and apprehension,I’ve decided it’s the best option for me at this stage is to go for the corneal graft in my right eye
    I’m a lot more positive and hopeful for a good outcome than I was before.
    The surgeons at Moorfields Eye Hospital in London,have advised me to have the graft, over seven years ago,I said that there is no way on earth that I will ever have the operation due to fear
    Even though it’s probably one of the best eye hospital’s in the world.
    All that I can do I’ve done.It’s the right time for me,there is no going back.
    The surgeons said that I have a 95% chance of a good outcome.
    To see is everything,I wish you well on your Journey anybody who has this operation is very brave and courageous,that includes you.
    So keep the faith all the best,until people have walked in your shoes they will never know exactly how you feel.

    Eric x
    30th December 2013

    • Eric- a graft is the best thing I ever did- 7 years is a long time to wait to get good vision back- even if just in the right eye with a well fitted lens that doesn’t fall out. Grafts are safe and in fact the most common and successful of all human transplant ops-good luck! and let us know how you get on

    • Hi Eric thanks for the reply I’m now just past the 13 month post-op point & doing very well. I still have the majority of my sutures in place & hope to start having these removed from February onwards. The graft has been the best thing for me as the vision in that eye pre-op wasn’t good due to bad scarring left from corneal hydrops. I wish you all the best with your graft when it comes around. Keep in touch & let us know your progress.

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