Corneal Calamity

Well its been almost 2 weeks now since I saw a corneal specialist at the eye unit, meaning I now have 2 eye constants! For those not in the know the cornea is the clear window at the front of the eye, it plays a role  in shaping the eye and keeping it at the right pressure.

For a while now i have known I have a problem with mine, it all started way back when I started trying to wear contact lenses again, I was getting on fine with them, and gradually increasing the time I spent wearing them, not wearing glasses was great! As far as I was aware there where no problems until I went for a check up and it was found that my corneas on the other hand HATED the change and where dye was placed in my eye they shone back brightly in such a shade of fluorescent orange that the optometrist doing my contact lens stuff was utterly shocked and ran off in search of a camera. She didn’t find a camera but immediately stopped all talk of contacts and reffered me to see my eye consultant, this is probably approaching 2 years ago.

I was diagnosed with corneal oedema, basically flid filled sacks where forming on my cornea as a reaction to having higher than normal intraocular pressure (caused by Glaucoma) a change in medication and no more contacts for me and the general consensus of the consultants I saw was that all would be well.

unfortunately that was not the case, my corneas have continued to be cloudy, and got cloudier. To be perfectly honest I have not really noticed this except maybe when I am very tired I fund I struggled to read even large print as everything is just rather blurry. I was refered to  a corneal specialist.

Now we are back up to me sitting in the doctor’s office a few weeks ago, I was fully expecting on seeing Mr Corneal Specialist that I would simply have another change of medication and that would be that problem solved, what I was essentially told was totally unexpected and a total shock to the system.

It turns out I need a corneal transplant in both eyes, this involves taking the cornea from a donor (yes a DEAD PERSON) and implanting it into my eye, once my own damaged bit of cornea has been removed.

This is because the cells right at the back of my cornea are dying as a result of all the surgery I had as a baby that saved my sight in the first place, apparently it’s happening to everyone who had the kinds of surgery I had back in 1988. My cousin born a few years before me with the same eye conditions has exactly the same problem. So the death of the cells in the back of my cornea is causing them to break away from the rest of my corneal float around and get in the way turning all cloudy and full of fluid.

Cornea transplants are quite common and are more often than not successful and rejection is relatively rare, and if the worst does happen they simply repeat the surgery. However for me there are more risks, my eyes are smaller than average and I don’t have a lens which is normally critical in helping the eye keep its shape during the surgery.

On the plus side the surgery might improve my vision, I say this but too much of an increase of my vision would defiantly be a negative for me. I have always been at very best partially sighted, if I was offered a drug that could get me full sight tomorrow with no risks and a 100% guaranteed success rate – I would not take it! I am happy the way I am being blind is part of my entire identity I have never really known any different to suddenly be fully sighted I would struggle to cope with such massive life change.

On the other hand the surgery might not work, it could all go terribly wrong and might damage my vision further.

However by far the worst case scenario is that I do nothing, slowly the condition of my corneas will deteriorate and I will lose all the vision I have, the amount of pain I experience in my eyes would also increase. This scares me, as much as I don’t want to be fully sighted I don’t want my vision to deteriorate dramatically either, I value the eyesight I have enormously and the thought of going totally blind is heartbreaking for me, it would without a doubt turn my life upside down, as it would with anyone.

It’s been a difficult few weeks trying to work out what I want to do about all this ready for when I speak to Mr Corneal Consultant again in a  few months time, the decision actually seems clear, I have to go for surgery and just hope an pray everything goes to plan. To further complicate matters I am not ashamed to say I am rather phobic of hospitals, them make me incredibly uneasy. I am lead to believe that the surgery requires a 2-3 day stay in Hospital. I can just about cope with a visit to the eye unit the thought of spending time actually IN hospital scares the pants off me – As it would lots of other people I’m sure.

I see Mr Macular Consultant at the end of this month and there was talk when I saw Mr Corneal Consultant that I need to see a Glaucoma specialist as well as things are not to stable in that department at the moment either, apparently I may have come to the end of the road when it comes to glaucoma medication too, meaning I might need more eye surgery to do something for my glaucoma too.

Overall in it’s a particularly unhealthy time for my eyes, but there is still hope!

For those who like to watch disgusting things here’s a link to a Youtube Video of the type of surgery I need, I warn you it’s not nice to watch!

I’ve Had A Needle Stuck In My Eye AGAIN!

It’s official on Tuesday I visited the eye unit and had my second injection of a drug called Avastin.

The aim of this needle poking is to make some blood vessels at the back of my eye that should not be there wither and die! It’s these tiny blood vessels that cause hemorrhages that damage my Macular that then lead to vision loss.

The process of being injected involves having lots of rather stingy local anesthetic eye drops placed in you offending eye. Then the whole area is cleaned with orange surgical grade antiseptic including the eye-ball. Then more this time slightly less stingy anesthetic eye drops. It’s at this point things get interesting a clip is then applied to hold both the upper and lower eye lids open, this is not to fun and I did feel some discomfort all the way along with the clip on my eye this time.  The big guns then come out local anesthetic is then injected underneath the cornea in the area around where the injection is going to go, this also stings a bit.  Finally it is time for the final and biggest needle yet the one containing the Avastin. The only way this can really be described is its like someone poking you in the eye with a needle the initial area where it goes in is numb but as soon as it pierces the white area of the eye it hurts.

Upon leaving the hospital I was given the advice that my eye would probably hurt later and that I would probably need to take some painkillers inside my head I was thinking actually I need some right now!

Tuesday and Wednesday my pain was on and off pretty bad its like someone has punched you hard in the eyeball alone, in effect your eye is bruised. I will say this time I looked less like something from a horror movie as my eye did not go blood-red.

Blinder

Well readers as you may well be aware I have, simply for ease of understanding labeled myself as a blindie for some time. When you refer to yourself as a blinky most people of a certain age think you are talking about a cartoon koala bear not describing your visual impairment as partially sighted. So blindie has worked to convey that sense of hey I’m visually impaired it’s not a taboo subject and I am comfortable to talk and even joke about it.

I have been partially sighted since the day I was born, well I was actually born with very little sight at all but after some fantastic surgeons working there magic on my tiny peepers all I have ever known is partially sighted.

Growing up it has been drummed into me, quite rightly by various medical professionals, my parents, teachers and sometimes even friends that I have to be careful about a bang on the head. This is because if I sustain a serious blow to the head I am at a higher risk than your average human being of detaching a retina at the back of either eye or worst case scenario both!

I never expected anything more than this, I am a realist and I am grateful for what I have. I also never really expected anything less for most of my life I thought everything was going to stay stable and  be the same for ever. Oh how naive I was!

Last Monday I went for my appointment after I had the hemorrhage a few weeks ago. The very nice consultant, who incidentally reads my blog here (hello Mr N) confirmed that I have had a bleed and the general state of my eyes,  especially the right one is not good.

We decided together that I could now be registered blind, before that moment I was partially sighted the way I had always been growing up and suddenly I had the new label of a blind person.

The thing is the more I think about it the more I realise that it is just a label but this is very difficult to comprehend.

A tiny part of me is devastated which I think is only natural but in reality the change of terms means almost nothing. I have not changed as a person my life is not going to change much if at all with this new label but it feels very strange.

I guess to sum up everything quite simply its a blow and a shock but it could be worse and it’s not the end of the world.

Positives will come out of it,  I have the joy now as a person registered as blind to a half price TV license so one day when I have enough space and money to buy a TV I can look forward to paying less license fee!

Further Vision Loss

On Sunday I had been back from Church say about 30 minutes when I noticed what is affectionately known in the eye business as a floater.

For me given my previous Sub-Macular hemorrhage this rings alarm bells in my brain.

After a brief spell of panick and trying to work out what to do with myself I rang ahead to Eye Casualty to let them know I was going to head in.

One £10 Taxi fair later I was stood outside Southampton’s Eye Casualty but was totally unable to go in. Not because of some anxiety driven panic that froze me to the spot but because there was a keypad with lots and lots of buttons and a small intercom with yet more buttons on it just above. There was also a very small water damaged sign that I presume said something important but I honestly have no idea. So there was only really one thing for it, I stood there and pressed buttons totally randomly and hoped for the best… This was far from successful and after some time had elapsed I pounced on a woman walking past and asked her to help.

When I got in I announced my presence to the nurse booking in patients and composed myself. This is necessary because the Eye Unit complete with Eye Casualty can be a stress full and incredibly dull place. 

Regrettably I went alone, just myself and Gus. I could have really done with someone to come with me but also did not want to worry my parents or friends on the odd chance that it was absolutely nothing to worry about. Not to mention the inconvenience to my friends if I rang and asked them to come down – I realise now this was totally stupid but it’s how I felt at the time and I guess I was simply in denial!

After some time the tests commenced: Distance vision test, blood pressure, blood sugar, pupil reaction, intraocular pressure (IOP) and ultrasound. I was rather intrigued by the ultrasound scan, I had never had one of those before and did not know it was even possible to scan an eye, but it is.

By this point I knew what it was and was simply waiting to hear it from the doctor.

Several doses of pupil dilating eye drops and 20 minutes of waiting for something to happen to my pupils. The doctor was able to get a semi-decent view of the back of my eye and confirmed a new haemorrhage in the back of my eye.

This is obviously pretty devastating, its means further deterioration and uncertainty. There has already been damage done to my vision by this bleed and I am left to wait to see what happens.

So all this happened on Sunday and I was been told if I have not heard anything within 2 weeks to give them a call and chase things up. Considering the state of the administration at Southampton Eye Unit and the problems I have had with appointments previously I don’t hold out much hope so have already phoned my Consultants secretary to chase this up.

I am yet to see or even hear from a consultant about this, so I am left in total limbo with no idea what is going on. I have no prognosis for this bleed, no idea whether I will again be able to have off label treatment with Avastin and even more worryingly no idea if the blood vessel at fault is going to leak more whilst I am left to wait.

I am incredibly thankful to the guys at the Solent CU and Church that have already prayed for my recovery. If you are so inclined and have the time please send out a little prayer for me.

  • The Previous haemorrhage can be found in the following posts (In order of appearance)
  1. Today’s visit to The Eye Unit
  2. Eye Casualty
  3. The Consultant Calls
  4. I am going to fight
  5. No Pretending
  6. The effect of it all
  7. I’M GOING TO GET A NEEDLE SHOVED IN MY EYE!
  8. Avastin is go!
  9. When they said ASAP they meant it
  10. My day on the ward

Blindness Is The New Cancer

As you may know I have an eye condition that effects my Macular in a similar way to Age related Macular Degeneration (AMD), but alas I am not seventy! In March I had a Sub-Macular Haemorrhage caused by sever Myopia (short-sightedness) and a combination of all the other eye conditions I posses (currently about 8).

A few weeks later at a routine appointment (that was nothing to do with my eye conditions) my GP decided to give me an eye test and inform me of a new brand of vitamin that was good for the eyes. Further research showed that it might help but at £60 for a months supply for me (being a poor student) it was never an option, and to be honest I was not sold on the idea that a vitamin pill would even help my condition.

Then I saw this story telling me that a supplement could  ‘slows down blindness’.  Research suggests if you have AMD and consume a diet high in antioxidants or even better high doses of antioxidant supplements it will slow down the rate of deterioration.

That’s it sorted then eat a load of fruit and vegetables and you’ll be fine… NO!

Exactly a week previously the story was “Oily fish ‘can halt eye disease'” . It suggests that  eating Oily fish ‘like mackerel and salmon’ appears to slow down or even halt the progression of AMD.

So if you eat a diet of purely oily fish, with a side of antioxidant rich fruit and vegetables you should be all right… Maybe!

None of the above dietary suggestions will cure AMD and make it all go away they are only theories worked out by scientists who have run trails who’s sole aim is to prove their theory to make money.

To further complicate matters there are two types of AMD, Wet AMD and Dry AMD.

Currently there is no reliable treatment for Dry AMD, wet AMD does have treatment options that can slow down the disease but wont completely eradicate it.

My main point of this long rambling post is this – There are loads of ‘cures’ and preventative measures flying around in the media for cancer we are used to seeing them if we took  every precaution we would live in contaminate free clean rooms, naked and with sterile safe foods shipped in every day. It is not reality nor is it practical do possible everything possible to prevent cancer because we simply don’t (in most cases) know what causes it.

Blindness is the same in this respect there 1001 things we can apparently do to stop us going blind but in reality Ophthalmologists (eye doctors) have not yet identified all the eye conditions that effect the human race yet let alone start on what actually causes them. Thus preventing them and curing them is impossible, but the media will still go for the story of the next cure for blindness to sell its content for a profit.

Facebook | The Guide Dogs for the Blind Association (UK)’s notes

Facebook | The Guide Dogs for the Blind Association (UK)’s notes.

(The above link takes you to a Facebook page where you can listen to the audio leaflet)

YOU DON’T HAVE TO BE BLIND TO HAVE A GUIDE DOG!

I am the living proof of this, I’m registered as partially sighted although it is commonly assumed that I must be compleatly blind to have a guide dog – WRONG!

My Day On The Ward

It’s just over a week now since I spent a day on the short stay ward of the eye unit, it was a long day particularly as I was sat there for about 4 hours waiting for it to be my turn.

Then when it was my turn all went well,  I didn’t see the needle coming towards my eye scream cry and then run, I was calm.

The whole op itself was about as horrific as I expected, my eye was numbed with drops and then rinsed out and then numbed and then rinsed a good few times.

Then I discovered there where actually two needles to go in the eye, needle number one was to numb it all and was supposed to sting, I love how oxymoronic that is!

I braced myself for the terror of the numbing needle and it was a complete anti climax didn’t sting at all really.

Then I got told to look left so the big gun, needle complete with Avastin could be inserted.

It hurt a lot!

My surgeon had to apply a lot of pressure to get the needle to pierce through my sclera (the white bit of the eye) and when the needle did get through it hurt a lot and there was a very odd popping sensation, I suppose you would expect that really but it was gross!

I can now conclude that the numbing injection number one did not work!

Due to the amount of pressure the surgeon had to apply my eyeball was very bruised and a lot of the surface blood vessels leaked so I left hospital with the white of my eyeball blood red.

As the numbing drops wore off I gradually got more and more pain in my eye, it streamed with tears constantly (which was irritating).

I had real big problems going outside in the sun and wind and stuff so I ended up having to patch my eye to make it  more comfortable. I can now safely say that I have heard every pirate joke going!

It’s taken a week for it to fully settle down and there is still some discolouration but I look less like a freak now.

I have to go back to see my specialist to discuss how it went and if it needs to be done again 4 weeks after it was done, its been 10 days and so far I have not had an appointment come through  so I think I will be chasing up the appointments system yet again!

Avastin is go!

Well today’s trip to the eye unit was LONG  over 4 hours long in fact so that was fun, especially as I have developed some form of cold/flu thing.

My pressures (as predicted by me) have gone back down to normal and the opinion of the consultant I saw was that it was they dilating drops that made it read so high on Saturday.

I had to have another Fundus Fluorescein Angiography which is a diagnostic procedure used to look at the blood vessels at the back of the eye in involves injecting a small amount of dye called Fluorescein into the blood stream so it can be watched going through the blood vessels and any leaky ones can be seen and photographed.

Last time the nurse got the cannula into the vein on the inside of my elbow first time, on this occasion however it took 5 attempts involving 2 technicians, 2 nurses and eventually a doctor!

It was a very crowded room and although it is mostly funny (I was trying to laugh about being a pin cushion) things got so desperate that one of the nurses went for the vein that runs kind of down the side of your thumb to wrist area and wowser that hurt a lot more than any of the others and worst still it failed!

So eventually a doctor had to come down because the nurses are only allowed 2 attempts each and after the second nurse they have to go up to doctor level, and the doctor got it first time, I had the test and all was well.

Then I saw a consultant who looked at the test results and had a little look at my eyes and basically there is still an active area of leaking from the blood vessels that should not be there, as the funding has been approved that means all systems are go and I should hear when my appointment is going to be within 2 weeks.

This is all good but there is however a slight down side.

Due to the complications of having glaucoma and Nystagmus (uncontrollable eye movement) and my eye history the consultants got together and decided that it would be better for me to have the injection done in theater. 

Instead of being in and out in 5 minutes as a outpatient I am going to be an in patient spending the majority of a day on the ward and due to it being done in theatre no hand holding companions will be allowed, I will be fine but it adds a whole new dimension to everything and is a little naff.

In total I will have 3 injections directly into my eye of Avastin each one will be 6 weeks apart and then after the last one I will have another Fundus Fluorescein Angiography to see how things stand, the good thing about all this is that hopefully most of that will fall over the summer break so there should not be too much disturbance to next years uni.

The Eye Unit Continues to Amaze

On Thursday of this week I got a interesting letter through from the eye unit appointments,  it contained 3 letters one saying my appointment was at 1 o’clock on Tuesday another saying it was at 2 o’clock and another saying it was at 3 o’clock now put that into context that I already had an appointment booked for this morning I was rather confused.

So I phoned the appointments line and was told that it was an error on the system, I needed to keep my Saturday appointment and that the appointment on Tuesday is actually at 1 o’clock.

So I got up at 6:30 Saturday morning,  fed Gus Got us both ready and headed out to get the 8:05 bus to Southampton General Eye Unit. Those of you that know me well will be aware that I am not a morning person at the best of times but on a Saturday, getting to the hospital for 8:45 was very difficult. My Bus was unfortunately late so I was about 5 minutes late for my appointment but the receptionist was very nice about it and because it was  a really small clinic with 30 patients and 3 doctors seeing them all they simply swapped me around so I was not late at all!

I’m getting to know the nurses quite well on the eye unit now, we are on first name terms in most cases they all love my dog and we have a bit of a laugh when I read out the lowest line of the eye chart I can see and they have no idea what I am going on about! (Due to the fact that all the letters are wrong)

So I did the distance vision test which is a laugh then went to have drops put in my eyes as normal in a attempt to dilate my pupils, I normally have to have 2 different kinds which normally don’t work to well anyway I told the nurse that I needed 2 different types and she assured me that I did not.

10 minutes later and I am approached and told I was right all along and that I need another lot of eye drops!

Anyhow I went in to see the doctor who was confused as to why I was there on the Saturday when I am going next Tuesday anyway, there where no consultants around because it was a Saturday so the doctor did all the usual checks and discovered that my Glaucoma was sky high in my left eye, the pressure is supposed to be around the 18 mark, my left eye was scoring 30. The doctor then got a bit worried and asked me a million questions and told me not to panic, I was very chilled out about it because I know eye pressures is all ways higher in the morning and after all the eye drops they had put in my eye must have had some effect on the pressure. Quite frankly the Doctor was telling me not to panic but she was more than me she then looked through my notes and pondered.

At the end of the day unfortunately my combination of eye conditions is both rather rare and complicated for this reason these days I all ways see a consultant so poor little registrar was evidently feeling rather out of her depth and did not know what to do. 

So I got a sorry I really don’t get why you are here right now and make sure you keep your appointment on Tuesday because I have no idea what to do!

Bless!

So I got up at 6:30 AM on a Saturday to go to the hospital for no reason, I remain unimpressed!

Seriously the appointments system is both fragile and ridiculously inefficient, 2 appointments in 4 days at the same place, now that’s just bizarre.

Also I used to get my appointment letters in large print,  but since moving to a new appointments system they are no longer able to produce the letters in large print, this is the eye unit the place where pretty much every patient could do with an accessible letter! I asked if my letters could in that instance be emailed through to me and was told that the system would not allow that either.