Monthly Archives: May 2016

Happy birthday, dear silicone oil…

My silicone oil is a year old today.  I wondered whether I should sing ‘happy birthday’ to it, or perhaps bake a cake to mark the occasion.  Naturally, I decided against giving it the bumps (The advice, “Don’t get a head trauma” still rings in my ears.).  This is my third lot of oil.  The first lot was in for seven months and the second was in for three and a half months.  So that’s almost two years of peering at the world through a silicone oil filled eyeball.  Now, don’t get me wrong, I’m not complaining here.  The oil is holding my retina in place, for which I’m exceedingly grateful.  But, as one of my eye buddies once said, “I have a love-hate relationship with the silicone oil.  I love it because it’s holding my retina but I hate it because of the crappy vision it gives me.”

As someone who’s pretty rubbish with numbers (it’s a source of some bemusement to me that I can remember huge chunks of ‘Hamlet’ with ease, and yet can’t recall my mum’s ‘phone number), I find it rather odd that I can remember all my surgery dates.  This is also somewhat unfortunate, as in the past couple of weeks I’ve found myself almost re-living the emotions of a year ago.  I had surgery to remove my second lot of silicone oil on 14 May 2015.  Before that surgery, I was terrified yet also incredibly hopeful and excited at the prospect of regaining some decent vision.  I knew that once the oil was removed there was a possibility that my retina would re-detach, but of course I didn’t think this would really happen.  I mean, surely three detachments were more than enough for one person, right?  I knew that I’d be living in fear of a re-detachment for a while, but I hoped that everything would go smoothly and the fear would lessen over time.

During the surgery to remove the oil, detachment number four was discovered.  I cursed my sodding retina soundly, but remained hopeful.  The detachment was fixed in surgery, a gas bubble was inserted, and posturing was prescribed.  This was all familiar territory; I knew the drill, and I was determined that this time the retina WAS GOING TO STICK!  I only had the short-acting gas on this occasion and when it began to disperse after only about a week, I was beside myself with excitement upon making the startling discovery that I was able to read again using my right eye.  “Wehey!”, I thought to myself, in awe and wonder.

After four more days, my excitement was cruelly smothered by a heavy blanket of doom, as I made an emergency visit to Moorfields after experiencing some odd visual effects, and was given the grim news that my retina had detached yet again.  Spectacularly detached.  In two places.  Within hours, the weird translucent areas I could see became darker as they gradually spread and transformed themselves into the dreaded ‘curtain’, which I could no longer see through.

Surgery number five took place on 28 May 2015, when quite a lot was done (a brief run-down can be found by reading ‘Where I’m at now‘) and silicone oil was put back in.  So within the space of two weeks I went from having blurry vision with my oil-filled eye but still reasonable peripheral vision; to only being able to see light with the gas bubble; to pretty good vision returning once the gas started to disperse; to all kinds of bizarre visual effects once the retina started to re-detach; to blackness once the detachment progressed; and then back to very blurry vision through the oil with considerably reduced peripheral vision due to the 360 degree laser treatment.  Exhausting and relentless emotional rollercoaster are the words which come to mind in describing my RD journey.

Anyway… I’m feeling in need of being cheered up now, so I’m off to put the kettle on and cut myself a large slice of silicone oil birthday cake.

 

 

Pondering Posturing: survival tips

A couple of people on the RD support group site recently asked for face-down posturing tips, so I thought I’d make a note of what I’ve found to be helpful whilst enduring the seemingly endless hours of maintaining one position with my face stuffed into the mattress.  (If you’re wondering what this ‘posturing’ lark is all about, please read Pondering Posturing, which explains it.)  So, here goes:

  1. Do EXACTLY as instructed by the surgeon.  As a mild control freak, it’s always been a source of huge frustration to me that there’s not an awful lot I can actually do in order to make the ruddy retina stick.  However… posturing is something which is within my control and it’s incredibly important to posture correctly (as instructed by the surgeon) to give the retina the best chance.  Therefore, I’ve always been fanatical in doing exactly as I’ve been told, regardless of the discomfort.  When it all gets too much, repeat the mantra: “Posturing is helping my retina, posturing is helping my retina… STICK, ruddy retina, STICK!”
  2. Distraction.  Audio books, iPlayer programmes, soothing music (a bit of Glenn Gould hits the spot), learning a language via audio CD, ‘phone calls (when the posturing includes time lying on one side), visitors (providing they don’t mind talking to the back of your head)… all these things help to keep the brain active and slightly distracted from the unutterable grimness of posturing.
  3. Don’t think too far ahead.  Take it an hour at a time, and plan what to cram into your next 10-minute break.  Okay, so once you’ve accomplished the necessities of hobbling to the loo, putting eye drops in, eating, drinking, stretching, etc., there won’t actually be many seconds of your precious 10-minute break remaining, but still – it helps to plan for the excitement of being vertical for a few minutes.
  4. Count down the posturing days.  With the previous tip in mind, I find that it’s usually best not to think about counting down until you’ve passed the half-way mark in terms of days.  Otherwise it’s just depressing.
  5. A memory foam mattress helps with the aching and pressure at various points caused by keeping your body in the same position.
  6. A very hot shower on the shoulders (in your 10-minute break!) helps with the pain and aching, as does gentle massage if you can find someone to massage your shoulders and the back of your neck.  The bonus of the latter is that it can be done whilst posturing!
  7. Eat ‘good eye food’.  (Read: Good Eye Food for further info.)  Okay, so it doesn’t help with the posturing itself, but at least it makes me feel as if I’m doing something positive to help myself.
  8. Indulge in the odd explosion of expletives.  It releases tension, and if you’re lying face-down with your head stuffed in the mattress, people won’t be able to figure out what you’re saying anyway.
  9. Growl at your retina when you feel particularly frustrated.  As above, this can help to release tension, although it may alarm the dog, or other posturing buddy you’ve acquired for company.
  10. Persuade someone to read aloud to you.  Depending on their skill in dramatisation, this can result in hours of entertainment.  I particularly recommend ‘The Woman Who Went To Bed For A Year’ (yes, really!) by Sue Townsend, which my aunt read to me during my second (and longest) period of posturing.  Thankfully, the title didn’t turn out to be prophetic.
  11. Eat chocolate.  Good quality chocolate, obviously.

If anyone has any further posturing tips, please feel free to add them by commenting below…  🙂

 

Hurrah for Jules Gonin!

At approximately 3am on Tuesday 15 April 2014, shortly after being diagnosed with a macula-off retinal detachment in the eye hospital in Berlin, the nice German doctor (who was reassuringly wide awake for such an unearthly hour) told me that not so very long ago there would have been no treatment available for cases of retinal detachment.  The patient would have been advised to lie down on the same side as the retinal tear for weeks, if not months, and hope to eventually regain some sight.  I stared at her in horror.  Already struggling to deal with the quite literally blindingly obvious loss of vision in my right eye and the prospect of emergency surgery in a foreign country, my shocked brain simply couldn’t cope with this incomprehensibly horrifying piece of information.  (Read https://rdramblings.wordpress.com/2015/06/15/how-it-all-began/ if you’d like a full run-down of my night of trauma.)  It was only months later that my curiosity compelled me to have a hunt around for further information on the history of RD surgery, and this is what I discovered…

Before the early twentieth century, there was pretty much no hope of successful treatment for retinal detachment, with success rates following the early surgical techniques being less than 5%. [1]  Retinal tears were first spotted in 1853, around the time that the ophthalmoscope (the instrument which allows the doctor to see inside the eye) came into common use. [2, 3, 4]  However, at first it was thought that the tears were a side-effect of the detachment rather than its cause.  It was believed that the retina detached as a result of force from behind it, resulting in holes and tears as the detachment progressed.  This belief led to surgeons concluding that the progress of the detachment could be halted by making cuts in the retina to drain the fluid. [2]  Upon reading this, I actually gasped aloud in horror, because of course the exact opposite is true.  Detachment occurs as a result of a tear or hole in the retina through which vitreous fluid escapes and then pulls the retina away from its place at the back of the eye.  I won’t go into further detail about the treatment which was attempted at this point in history,  but suffice it to say that reading about it made me shudder and I wasn’t surprised to learn that the results of treatment up until the turn of the twentieth century were so bad that it was generally considered insane to even attempt surgery. [2]

Cue our hero, Jules Gonin, who rode into battle on his white charger, with his cape billowing in the wind and an expression of grim determination on his face as he lifted his chin defiantly in response to cruel jeers from the other side of the battlefield.  Okay, that’s not actually historically accurate, but you get the general picture.  Born in Lausanne, Switzerland, in 1870, Jules Gonin studied medicine at the university there and eventually settled down to working in ophthalmology at Lausanne Eye Hospital in 1896.  He became particularly interested in the cause and development of retinal detachment, and its subsequent treatment.  He published a number of papers, on the subject, co-founded the Swiss Ophthalmological Society in 1908, became director of the Eye Hospital in Lausanne in 1918, and was appointed Professor of Ophthalmology at the University of Lausanne in 1920. [1,2]  So basically, he knew his onions.  Or rather, his eyes.  Or, to be strictly accurate: other people’s RD eyes. 

As a result of his extensive research, he became convinced that the hole or tear in the retina was the cause of the detachment, rather than the other way around.  He logically concluded that treatment would only be successful if the hole or tear was mended, although at first he couldn’t work out how this could be done.  Despite this, and the fact that many of his fellow ophthalmologists continued to oppose his views, sticking rigidly to their original dangerous beliefs, Jules Gonin continued his efforts to figure out a cure. [1,2,4]

He went on to develop the ignipuncture, a surgical procedure by which the retinal break was sealed by cauterisation.  He gave details of this technique at the German Opthalmological Society meeting in 1925 and emphasised that the process of finding the retinal tears was just as important as the actual surgery.  His ability to find retinal tears increased dramatically over the years, in contrast to the surgeons who still refused to believe that the tear was the cause of the detachment. [2]  This emphasis on the importance of locating the tear is vital, and an issue which I’m very aware of, particularly after speaking to a fellow patient once, who told me that one surgeon found a tear in her retina and assumed that was the only one until she was examined by another surgeon who discovered two additional tears in a different location.  Obviously, all tears must be found and treated for the re-attachment surgery to stand a chance of succeeding. 

Eventually, as more surgeons learnt the technique developed by Jules Gonin and observed successful results for themselves, his findings were accepted.  In 1931, he reported a success rate of 53% based on 221 detachments on which he operated using the same technique; and a success rate of 67% for detachments which were less than three weeks old. [2]  In the last few years of his life, he was swamped with difficult cases and visitors from all over the world.  He died in 1935, leaving a large portion of his assets to people who had lost their sight late in life. [1]  I think this gesture underlines what a remarkable man he must have been, not only in his relentless pursuit of a solution to the apparently hopeless conundrum of retinal detachment, but also in demonstrating compassion for those who had lost their sight.  If I ever get a cat, I shall name it Jules.  In the meantime, who will join me in a great big resounding cheer, as I lift my mug of tea and cry, “Hurrah for Jules Gonin!”?

References
1. Wolfensberger TJ. Jules Gonin. Pioneer of retinal detachment surgery. Indian J Ophthalmol [serial online] 2003 [cited 2016 Apr 15];51:303-8. Available from: http://www.ijo.in/text.asp?2003/51/4/303/14656

2. Gloor, BP and Marmor, MF. Controversy over the etiology and therapy of retinal detachment: the struggles of Jules Gonin. Survey of Ophthalmology [serial online] 2013 [cited 2016 Apr 16];58;2;184-195. Available from: http://www.surveyophthalmol.com/article/S0039-6257(12)00193-2/fulltext

3. Keeler, CR. A brief history of the Ophthalmoscope. Optometry in Practice [serial online] 2003 [cited 2016 May 8];4;137-145. Available from: http://www.optometryinpractice.org/en/utilities/document-summary.cfm/docid/401E0411-F197-4ED1-99936804BFEADC23

4. Albert, DM, Gloor, BP, McPherson, AR. Why Jules Gonin achieved his “audacious goal initiative” – and why he is a model for the present day. Ophthalmology [serial online] 2015 [cited 2016 May 13];122;10;1955-1957. Available from: http://www.aaojournal.org/article/S0161-6420(15)00536-9/fulltext

New vision, new job..?

I’ve been assured multiple times by eye surgeons and nurses that computer use won’t damage my eyes or cause any problems for the retina, but that it may result in increased tiredness.  As my job involves staring at a computer screen for pretty much most of the day, I’ve always been very relieved to hear this.  However, bright screens aren’t comfortable for me to focus on, and the brighter the screen the more tortuous it can be.  My computer screen at work is set to the lowest brightness possible and these days I only use one screen rather than two, which definitely helps matters.  Still, by the end of the working day, my eyes are sore and aching, and I notice a vast difference in the way they feel in comparison to weekends and days off.  In addition to this is the knowledge that spending all day in front of a computer screen isn’t particularly healthy and I have a sneaking suspicion that segments of my soul are being silently stolen as I sit there.

Some years ago, as a deluded graduate believing that the world was my oyster, I dreamt of a career in art restoration.  I did a fair amount of research into it but upon investigating postgraduate courses the plan was abandoned due to limited funds as I followed the only piece of sensible advice Polonius gives in the entire text of ‘Hamlet’: ‘neither a borrower nor a lender be’.  I did, however, made an attempt to sneak into art restoration via the back door of office administration by applying for a job at Tate Britain.  I didn’t get it, but thoroughly enjoyed a behind the scenes tour of their conservation department, following the gruelling interview.  Although my funding pot has now increased somewhat, my colour vision has taken a nose-dive and  I’d no longer meet the admissions requirements for a course in art restoration.  So… it’s time to come up with other ideas…

Obviously, some jobs can just be dismissed out of hand.  Professional boxing, for example.  A new career as a professional rugby player would also be a big no-no.  It’s a shame really, as I think either of those occupations could potentially provide an excellent outlet for RD-related frustration.  But I always follow the advice of the surgeons and was once clearly instructed not to take up boxing or rugby, so that puts paid to that.  Various other options  can also be immediately discarded due to the danger of getting a head trauma (read https://rdramblings.wordpress.com/2016/01/31/dont-get-a-head-trauma/ if you’re wondering what I’m talking about here): construction worker, jockey (I’m too tall for a jockey, anyway), tree surgeon, window cleaner, tightrope walker (this would bring the additional problem of actually being able to focus on the tightrope), astronaut, deep-sea diver, and stuntman.

Other potential occupations must unfortunately be disregarded due to their eyesight requirements.  For example, despite my increasing knowledge of retinal surgery, I don’t think I’d get away with qualifying as an ophthalmologist.  Possibly not even an optometrist, although I may have to check that one out.  A new career as an airline pilot is definitely out of the question, as that requires 6/6 vision (or vision corrected to 6/6), and the corrected visual acuity in my right eye is currently 6/60.  ‘Normal’ vision is 6/6, and this means that I can only see from six meters away what a person with ‘normal’ sight is able to see from a distance of 60 metres.  Put in more simple terms: I can’t read the top line of the eye chart using my right eye.  Apparently, the requirements for a fighter pilot are even more stringent, so I haven’t even bothered to look that one up.

Although the issue of heavy lifting is one which I’ve received conflicting information on, when it comes to my eyes I’m definitely playing it safe.  Therefore, this also places certain occupations in the out-of-bounds category.  For example: weightlifter, removals person, refuse collector, mechanic (this also involves lying on your back, so is a double no-no), paramedic, carpenter, thatcher, vetinary surgeon, wheelwright, and cheese stacker (http://www.theguardian.com/uk-news/2016/may/06/forklift-driver-survives-eight-hour-ordeal-by-cheese?CMP=Share_iOSApp_Other), to name but a few.

I sometimes think it would be enjoyable to have a job which is based outdoors in the fresh air, but this could also be tricky as a strong shaft of sunlight at the wrong angle can be even worse than staring at a screen.  Plus, in the winter when temperatures drop considerably, I don’t fancy having to deal with the resulting foggy vision and cold, aching eyeball for extended periods of time.  So I guess for now I’ll stick with what I’m doing.  However, it never hurts to consider alternative options, so if anyone has any suggestions, please let me know…