So close I Can Almost Touch It! 


​I had some work done in theatre on my left eye to get it in better shape for the cornea transplant coming up.

Because I have a lot of deep blood vessels growing into the middle of the cornea from the inflammation of scleritis my doctor has had to try and get rid of them because leaving them would give a graft a very high rejection rate. The procedure I was having was to cauterise the blood vessels. 

I had sedation and a nerve block for the procedure, I remember two things, the first one being that the first cut he made hurt, I let him know and he adjusted the pain med and then right at the end I remembering him saying that he was going to put a bandage lens in.  The whole procedure went past in a blur and the next thing I knew I was in recovery.  My doctor looks extremely cute in his operating scrubs; I sure hope I didn’t tell him that in my medication induced haze LOL

I was home by lunch time and spent the afternoon sleeping. Once the meds had worn off it was really quite painful. I had a horrible gritty feeling like something was in my eye and was really irritating it.

I had a follow up appointment in the clinic two days later and he was happy with how it has gone but he couldn’t really give me an outcome yet because it has only just started to heal. I was kind of disappointed that he didn’t book my graft in; I was so excited that this final step was done and we could move on.  Anyway I have to see him again in 2 weeks and in the meantime I am using 2 drops, a steroid and an antibiotic 4 times a day.  There could be some more scarring to come on this poor old battered cornea as he made 9 holes in the cornea to cauterise the vessels.

Monday I am seeing my Rheumatologist who will hopefully give the go ahead to continue with the Infliximab infusions which are working really well.  Guess a lot depends on my blood tests etc but at this stage I would be gutted if they stopped it as I am doing so well and have adjusted to the side effects, and I really feel that if they stop this med the scleritis will come back.  Sometimes I feel it in the background but it doesn’t amount to anything because of the Infliximab.

Well that’s about all the news for now, more to come in 2 weeks with hopefully a booking for a graft!


A Horrible Scleritis Flare

I am having the worst scleritis flare, my eye is red and so painful I can hardly bear it.  My eyelids and under the eye are also swollen and sore.  This is the worst flare I have had in a very long time.

Scleritis eye

Over the last month I have had 2 Sub-Tenon’s steroid injections. I have been getting these as the orbital floor injections are no longer working.  Yesterday I had to have another as the one I had last week didn’t work.  Last week I saw a different doctor and my doctor feels that a couple of things contributed to it not working.  One the doctor may not have got the injection into the correct area and two I have so much scar tissue on my sclera from all of the injections I have had this could have stopped the steroid getting into the right area. My doctor seemed to be cutting and injecting for ages yesterday.  He said the scar tissue stopped him and he had to change the cut and injection to a different area.  I could feel him rummaging around in my eye but fortunately I didn’t feel anything apart from one of the injections.  That was quickly sorted out with another numbing drop.

sub tenon


My eye is really sore this morning from the cuts but much of the scleritis pain has gone thank goodness.  Scleritis is a unique type of unbearable pain.  I have tried touching my eye (with clean hands of course) and it feels really tender and very bruised a much different pain from scleritis.

I also spoke to my doctor about when he thought he could realistically graft my left eye.  I am increasingly struggling at work and generally in my own daily life so wanted a time scale of when this horrible vision could potentially get better.

He feels within the next 3 months I will have a new cornea.  I am having my 1st Infliximab infusion on the 31st August and he wants me to have my trial (weeks 0, 2, 4, 6 & 12), then if it works that will be fantastic and we will go ahead with the graft.  If it doesn’t work he indicated that he will still do the graft because my vision is getting worse and we need to do something soon.

I am worried that he said it would be a high risk graft due to my extensive corneal neo-vascularisation, I believe it has a much higher risk of rejection than someone without blood vessels growing into their cornea.

He wanted me to try and get over the worst of the scleritis first so that I am not battling pain in both eyes but the way things are going that might not be possible.  In just a couple of months I will have had scleritis pretty much constantly for 3 years.  I really hope the Infliximab works; my doctor said everyone is pinning their hopes on it. I think if it doesn’t work we might be out of options so I have no idea where we go from there. Can’t even think about that scenario right now I have to be positive and think that it will work.  It will work!

My eye saga continues!  I so cannot wait to be pain free and have better vision!