Wednesday 11 April 2012


Vitrectomy – my experience    
In January 2012 I had a procedure known as a Vitrectomy. This medical procedure may be recommended for those with an eye condition called a Macular Hole.  When my doctor told me about the surgery it wasn’t the actual operation that was of concern – it was the fact that I would need to spend 24/7 looking downwards for the first week after surgery and then for lesser periods of time in the weeks following until the gas bubble, that is put in during surgery, totally dissipates. This process can take many weeks and in my case, the bubble lasted 7 weeks and 2 days! For 50 days following surgery I spent hours each day in the required face-down position and all up I estimate that I spent 318 hours “looking down” over that post-surgery recovery time.  

But back to my immediate reaction when my doctor told me about the requirement to be face-down after surgery....... At first I was disbelieving – surely, I thought, in this day and age there must be an easier way. I was an active 55 year old, walking or gyming every day. How on earth could I actually stay face-down for all that time? Wouldn’t my neck and shoulders become fused from lack of use? Wouldn’t my back just ache from being in such an unnatural position? Wouldn’t all the blood run to my face and make me look all puffy? So after a period of disbelief... and then anger..... that I could be in such a predicament, there came a time when I realised there was just no way out of it – it was either lose my eyesight in my left eye or undergo the surgery and stick with the face-down program. Not really a choice – short-term pain for long-term gain! Whichever way I looked at it, there was really no positive spin and everyone I told, my work colleagues, my friends, my family all had the same bewildered disbelieving look, aghast at the very thought!

As the Doctor said – the surgery is not a difficult experience for the patient – anaesthetised but still awake to hear all the comings and goings in the hospital theatre - obviously the patient is in the hands of a very skilled surgeon who can do the most amazing things when it comes to this microsurgery. But once the gas bubble is placed in the eye, it’s really over to the patient to try and do everything to support the surgeon’s excellent handiwork – and this involves staying face-down for long periods so that the gas bubble rises and presses against the macular surgery site assisting the healing process. In my mind I kept visualising it like a spirit level, the tool used in building – and keeping that bubble in the right position as much as possible.

There are various aids to help. The use of the equipment for hire is, in my view, an absolute necessity. In Australia, a company called Summit Support supplies the equipment and information about what was available was provided by my doctor – they can also be found on the web. They were great to deal with, the staff member I spoke to having empathy for my situation and getting back to me promptly to answer any enquiries. The Vitrectomy Chair is like the ones you see in those Chinese or Japanese massage shops. My first reaction when having the chair demonstrated to me was that it was akin to a torture chamber. But, in the end, it was a relief to get into the chair as it supported my back and neck by spreading the pressure across my knees, chest, arms and head – you still need to get up and move around but it was my mainstay during the face-down periods.  Make sure that when the chair is delivered you get the consultant to set it up especially for your size – being very tall, I needed the “large” chair and having it fitted to my length was an essential aspect of comfort when spending so much time in it. The Z-shaped mirror that comes with the Vitrectomy Chair was such a help and a bit of a sanity-saver – face pointing to the floor with the mirror positioned just so, I watched lots of TV with the Australian Open tennis being on at that time.  I also used the mirror device to see the faces of my visitors as it’s hard talking to someone when you’re staring at the floorboards. It became achingly clear to me how important eye contact is for humans! In the end, I kept the chair for 7 weeks because even though the face-down periods are just 90 minutes a session towards the end of the recovery period, I still found that to be a very long time to maintain position just sitting in a lounge chair – without the special chair, it was a recipe for a very sore neck and shoulders.


Another friend loaded a selection of movies onto a hard-drive and I found that by placing my laptop on the lounge room floor and hanging my head over the end of the couch, I could watch a movie – not the most comfortable, but bearable, and it helped pass the time. Reading tends to be quite tiring with one eye covered, so another lifesaver was having a few “audible” books loaded onto my iPad, these are also available as CD’s from libraries.  I had never been someone to listen to music or the radio through earphones but it was amazing how attached to them I became. A good story helped to entertain and pass the time and I would often fall asleep at night listening to a book being read to me. Let’s face it, there are worse things than drifting off to sleep with Richard Branson’s soothing tones in your ear reading “Losing my Virginity”.

I found the nights the most difficult – even with the Vitrectomy bed attachment aid set up on the bed and lots of pillows around my body for support (those extra-long pregnancy pillows are particularly good in this situation), I found it very uncomfortable to sleep face-down – lying on my tummy placed a lot of pressure on my back and my sleep was fitful. A glass of wine (inhaled...no, I mean drunk through a straw) and a Valium at night (prescribed by my GP to assist as a muscle relaxant) was an essential part of the routine for me – at least that way, the first few hours of sleep were fairly deep and peaceful. Speaking of drinking, I invested in a glass straw as this worked better with hot drinks and felt a bit more sophisticated with the wine as well!!

But, incredibly uncomfortable as the nights were, I did not need physio at any stage but I did have a wonderful sister and a friend come and give me a back and shoulder rub. This felt really good and was something I really looked forward to.  Whilst you can shower during this first week, hair washing is out of the question as water can carry bacteria which you don’t want anywhere near your eye at this point. Now we’re talking serious despair.....I wash my hair every second day ritualistically and this was very bad news indeed. In the end, I secured it back away from my face and it wasn’t really a big deal after all.

I had a number of visitors over that first week and that really helped to break up the tedium and monotony and gave me something else to think about.  I received some beautiful flowers from work colleagues and my mum thoughtfully placed the vase on the floor so I could admire them. I was very fortunate to have my parents and husband care for me during that first challenging week – and provide moral support – the more help you can get during that challenging first week, the more likely you will be to stick to the face-down regime. Jokingly, my daughter bought me a bell to ring for service but I thought that might be stretching the friendship with my carers!

Looking back on the experience now, I must say that my 28 year old son was right.... “Mum, the time will pass” – and so it does. Probably in a bit of a haze as you disconnect yourself from the real world for this period.

There were a few things that came as a shock and they’re important to mention because I think it’s better to know ahead of time. After the first week or so you won’t need to wear the eye cover and it was removed by the doctor at the one week check-up. Walking outside after that consultation presented quite a reality check for me because it was only at that point I realised I couldn’t actually see anything out of the operated eye. There was light and shade, sure, but I had absolutely no idea what the objects were. I was so focussed on surviving the first week that I didn’t understand - or ask-  that it would be this way and so was very frightened and worried, thinking the whole thing had been a failure and that I was going to be totally blind in that eye.  A few phone calls to the wonderfully calming nurse at the Doctor’s surgery put my mind at rest, but she wouldn’t have received my emotional phone calls if I had been more prepared for this. In my case, about 2 weeks after surgery, the very tops of trees and the sky started to become visible to me as the bubble reduces from the top-down – I was constantly covering my good eye to test out the operated eye to see if any progress had been made over the last couple of hours.

Of course, it’s not like that – the progress is slow and not necessarily different from day to day.

As the bubble gets smaller and makes its way down your line of vision, you get more of a picture that it really is a bubble as it waves up and down like the top of the ocean as you move. As its size reduces, it can have smaller bubbles forming around its perimeter and these can all move independently as well. Crazy stuff!! In the end, I called my bubble “Gretchen” and would tell my family that Gretchen has 2 kids today, or 5 or 7 – whatever the combination was that particular day.

As much as I personalised her, I wasn’t sad the day she finally left – But, conversely, I didn’t get the enormous boost of relief that I was expecting when she disappeared for good. I think I can put that down to the fact that each change in the Vitrectomy recovery is small and so the differences from day to day are not significant. You need to be prepared for a long recovery period and here I am at almost 11 weeks post-op starting to feel like my eye is almost normal again, though I am still putting in drops twice a day, but I am also putting on eyeliner and mascara so I feel much more like my old self!

Something else to prepare for – I did not drive for 7 weeks after the operation because I felt that I could just not see well enough for those time/distance judgements that you make unconsciously all the time when you drive.  Just moving the car in the driveway one day and running up against the side wall was enough to convince me that my peripheral vision wasn’t quite up to the task.  For me, not driving for all that time was not a big deal because I live within walking distance of my local shops.  But depending on your situation, the fact that you are not safe to drive could be quite isolating during those weeks of recovery and you need to plan for this. Also, I wasn’t able to go back to work for six weeks after my surgery – as my job involves much reading and computer time, my eye was just not up to the task and the first week back was quite difficult needing frequent rest stops for the eye. Adding to the challenge is that one of the eye drops prescribed has the effect of dilating the pupil and so makes focussing difficult.

The best news recently was that my Doctor tells me that the macula now looks excellent and there is no sign of the scarring that was the cause of the initial problem. Maintaining that face-down positioning so faithfully has paid off and I am very thankful that I stuck to the program. Yes, it is gruelling and tedious and very challenging – you need to be absolutely determined to stick with it and it’s tough.....character building I think they call it....... but I did it!
...............And then to get the news that my eye sight has been secured – what a feeling of elation and joy - worth every minute of the inconvenience. 

6 comments:

  1. I am recovering from a vitrectomy right now, had it last week along with cryosurgery and retina reattachment..I'm scared my vision won't come back.

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  2. Ann, thank you for taking the time to provide information about your experience and information that doctors don't always share. I am scheduled to have a Vitrectomy in 1-1/2 weeks - your information is extremely helpful. I have been worried about nighttime and sleeping and I was wondering about driving. I have rented recovery massage equipment, however, I was only planning to be off work for a week or two. Now, I'm thinking about putting my surgery off until December when I can take more time off without worrying about work or driving. I do have my preop appointment this week so I will be asking several questions. If you have any thoughts/advise I'd love to hear it. By the way, I sure could relate to the response you received from family and coworkers who were in disbelief regarding the face-down recovery time. Crazy stuff, but I'm just anxious to get it behind me. Thanks again for sharing your experience.
    Lori

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    1. By the way (this is Lori again), congratulations on the success of your surgery and recovery! I can only imagine the joy and elation of that news, especially considering the personal strength it takes to see it through. It was great to hear of your success.

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    2. Hi Lori.

      I wrote a reply to Anne on the 14th of August 2018. My response was more for people about to have vitrectomy surgery simply because I wrote my response long (years) after Anne wrote her original posting. You will be able to see my response below. It might be worth you reading about what has happened to me and how I approached recovery. My experience with 'posturing' was very different to Anne's experience and I would recommend that you research this thoroughly before committing yourself to a strict face down recovery process. It doesn't have to be a nightmare in recovery if my experience is anything to go by.

      Also, I think that you would be wise to have the surgery earlier rather than later. Time is also an enemy here. Earlier medical intervention will almost certainly increase your chances of success.
      Once again, you need to do some serious research of your own - time of surgery could be a very important variable determining the success of any procedure.

      You really must discuss these things with your specialist - and seek other opinions.

      Rod

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  3. Hi Ann. I am at day 8 in recovery from a Vitrectomy for a full thickness hole in the macula. I am 72 years old and my 'problem' had become apparent about 2 months ago. Quite suddenly I realised then that my right eye had trouble seeing in the centre of my field of view. A category 3 (full thickness hole) in the macula was diagnosed. I am diabetic but I was assured that this problem was almost certainly not because of my diabetes.

    I found your story most interesting because I am going through the early stages of what you experienced.

    However, there is one big difference between your recovery process and mine so far. My specialist does not believe in the strictly face down posturing that you obviously endured under instructions from your doctor. My Doctor did request that I keep my head down (leaning forward) if I can but he told me that this as not as critical as some doctors believe. He did tell me NOT to sleep on my back and he had nothing against me sleeping on my right or left side. He thoroughly convinced me that laying on my back while asleep was a bad thing to do. I didn't trust myself to not roll onto my back at any time throughout the night. How could I be sure that this would not happen while I was asleep? So, I made a rolled up towel into what looked like a rocket pack and tied this to my back with 2 judo straps. I slept with my rocket pack all through each night. I physically could not roll onto my back.

    My wife actually circulated a photo of 'Rocket Man' to my family and friends - much to my embarrassment and their amusement. However, it worked like a charm. I have not yet rolled onto my back in 8 days. But, other than that 'posturing' I did not at any other time insist on keeping my head face down. However, I am careful not to tilt my head back. I have been walking regularly and not tried to keep my head lowered. My doctor doesn't believe that the draconian practice of virtually always keeping the head down is necessary. It seems like psychological torture to him - and me. My doctor (a specialist) has been doing vitrectomy surgery for 15 years and has done thousands of operations with the same posture recovery advice to all his patients. I was a bit wary of his recovery advice at first because there are MANY postings on the Internet that insist on the strict and unpleasant practice of face down recovery. My doctor was so emphatic about a 'soft' face down policy that I did take his advice and I think I can say that my recovery process has been much easier than the recovery process that many people endure. I suspect that the strict 'face down' theory of victrectomy recover is going to evolve in future years. I think that this is a good example of a practice that has become part of medical folk lore and thereby it will die a slow death. Having said that, I do not see a strict face down policy as being harmful medically. I'm absolutely convinced that it does no harm to the physical condition of the patient in recovery. In a way it is extra insurance that the eye problem will be healed - but at what cost?! I agree with my specialist, I do now believe that it is a recovery over kill that drives the poor patient crazy. It is nothing short of mental cruelty and it can cause very sore neck or back muscles and the boredom factor is simply off the scale.

    Ann, I did see all the weird things that you described as the days progressed throughout week 1 and like you it was a bit scary. At day 8 my right eye is starting to see over the gas bubble but the coordination of both eyes is still in need of improvement. That should come, I have been told. The gas bubble is obviously shrinking every day and the disconcerting and wobbly surface of fluid in the eye is progressively dropping down through my field of vision. I can already see that the hole in the macular is almost certainly gone because there is no blurred or distorted area in the centre of my field of vision any more. Ann, as you said, time will tell. :-)

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    1. This is Rod again. Keep in mind that the eye inverts all images so in reality the water level (at the bottom of the eyeball) is rising and the gas bubble (at the top of the eyeball) is shrinking towards the top of the field of vision. However, to the viewer, it seems that exactly the opposite is actually happening - because the images are inverted. It's very weird!!!!

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