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Archive for the ‘hospital’ Category

Warning: a grim, no-holds barred post.  This may depress you so no offence taken if you wish to pass by.

This weekend was my turn on the Cancer merry-go-round.  All weekend.

Researching information, data, following blogs, case studies, alternative treatments, supplementary treatments, tried and untried treatments.  And getting thrown about, sometimes nearly being hurled off, blown up in the air, dragged round on the ground – but trying to cling on for dear life to some kind of objectivity and clarity.  Readers, there is none.

Some people can be helped by some treatments, yet for others there is no help from any kind of treatment. Everyone is an expert in their own field: no-one seems to have the big picture.

Big pharmaceuticals fund research: but only if some kind of drug protocol might have proven benefits.  Obviously.  But it is so hard for other researchers to make any headway in getting funding to check out the effects of basic changes in lifestyle or diet which, if successful, would bring in no money to anyone.

Then there are the politically driven guidelines for medics who are not allowed, in the UK, to discuss any other treatments than those which have full official sanction and funding.    So there is no way to find out about unofficial treatments or experimental treatments unless one pays: and therein lies the next destabilisation.  The prices charged for the slightest thing are astronomical.  £190 for a telephone consultation.  £335 for some urine testing.  £3,000 per week in a German clinic – and that’s without paying for food or lodging.  And those views are not unbiaised either.

So there is nowhere I have found where one can have an objective discussion about the whole subject with access to current research papers both published and unpublished.  In New Zealand they are having some success with stem cell treatment.  But they use stem cells from fat.  In the USA and UK the research appears to be concentrated only on stem cells from muscle.  My knee surgeon dismissed stem cell treatment as expensive and useless for orthopaedic problems although I know from first hand testimony that this is not always the case.  My cancer surgeon dismissed chemo, radiation, and even immunotherapy as pointless and would not let me even discuss stem cell treatment, as being unworthy of note.  Excuse me?  My body, my future, my muscle mass loss, my mobility compromised, my unhealed scars: and we cannot even mention some treatments? Last night I decided to have a rest from the merry-go-round and watch some Netflix instead!!

However, this morning I begin the Roller-Coaster.  Never a dull moment at this Fairground.  I have just had to cancel my holiday innoculations because of advice that my immune system has enough to deal with already because of the cancer, so no unnecessary challenges.  The first meaningful change to my plans because of the liposarcoma.

My son has messaged me: he is trying to fit his work schedule round my next consultations in London in September and the proposed surgery in November. This makes it horribly real.  Shortly I will have to ring the Royal Marsden to speak to the Consultant’s secretary to find out whether they have a time-line and who will be available to speak to me about anaesthetic and medical allergies, and how we are going to find our way through this maze.  Although I left them with pages of details of my chemical allergies, I suspect these have lain in a file, unprocessed, because there is no way round or through these problems and they have not had to deal with someone like me before.

Which brings me to the post traumatic stress disorder I suffer from.  Because of horrific experiences in childrens’ homes and hospitals, both as a child and as an adult, this is real and present.  Institutions terrify me.  Hospitals speak to me only of death and suffering. And this morning I woke up triggered by the message from my son, lying here going through all the things that have happened to me.

Spending three months in Great Ormond Street Hospital for children when I was ten: I never saw my family as they did not have a car, public transport was not available, and they were not well off.  Being told by nurses that my condition was dirty and smelled foul:  I had ulcerative colitis and was a child.  What could I do?

Things like lying on a table surrounded by medical students of my own age, treated like a lump of meat while in stirrups and 12 men looked into my vagina. No permission asked, I never even knew it was going to happen.  I was never spoken to or acknowledged. Oh I am wrong, the consultant barked at me to open my legs wider as they could not see well enough.  I was 21.

Having friends and family come to my bedside from all over the UK and some just off the boat from Europe, to say ‘goodbye’ as I was not expected to live.  Yes folks, I have already done the gradual decline and debilitation journey to death.  Twice.  The months of slow loss of dignity, of strength, of autonomy. The hell written on faces who can only watch and wait. Admittedly I only got to a few days away from death, but I know the journey. And this morning it feels like yesterday.

Surgeons who inserted feet of dry gauze into a deep, deep wound surrounded by the most sensitive nerve endings in the body, without soaking it first so that it stuck to the dried blood in the wound: it had to be pulled out, millimentre by millimetre bringing tissue with it, while I was held down. Afterwards left in complete physical shock while the tearful nurses tried to pretend it had not happened.  When questioned one said I was so near her own age she could not cope with what I was going through.  This was not a one-off incident.

Allergic reactions to anaesthetic leaving me with such migraine pain that I lay rigid, cold, sweating, second by second, minute by minute, hour by hour, for three days.  It took six hours for a doctor on night duty to be free to come and see me, then longer to get the drugs, and then no effects from the morphine or other drugs.  One nurse said she had never seen anyone in such pain on a surgical ward.

These are just the tip of the iceberg: I feel it may be more than enough sharing.  These happened some years ago so I expect things are very different now.  It is just that these are all my mind and body know and consequently I am in full panic mode right now.  Those of you with PTSD know where I am at today. Curled up in bed, crying, hot, sweaty, trying to ‘write it out’ since I dare not go downstairs and inflict it on my husband.  He is worried enough.

I think this Roller-Coaster is going to be a long one.

So,  having depressed both you and myself, I am going to try to leave this Funfair for a while: I shall crawl out of bed, have a cup of tea, and pretend none of this ever happened, or could ever happen again.  Make my phone calls, then try to organise some counselling and support.  Then thrust my head deep, deep, deep in the sand and on to other things: the garden calls,  I need to write up a statement for Eddie’s Crowd-Funding, I want to think about clothes for China and organise a visa photo.  Not sure whether I have the strength, but I will try.

It’s so ironic that people think I am strong.  If they only knew what you now know.  Enough already. Worse things happening to others. Slap wrist, pull up socks, deep breaths, put smile on.  OK, time to face the day.

 

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So . . . . the longest silence from this site?

What’s been happening?

As ever with life, good things and bad.

A lovely short break in Paris (view from my tiny courtyard studio  flat)

DSC02167where I was lucky enough to meet up with blogger friend Chlost for an afternoon and evening meal with her and some of her family.  That visit was full of memories to treasure.

A wedding in Scotland of two gay friends: small but perfect in an old stone House on the edge of the water in Oban.

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Staff who were thrilled to cater for their first ever gay wedding and threw themselves into making the experience wonderful.  A super trip but I was ill on the way home which began a series of medical encounters, of which more later.

A 70th Birthday party to keep close to the heart.  Two years in the planning.  I hired a boat on Lake Windermere in the Lake District: with balloons, cake, farm food, Ceilidh band and magician and . . . well 80 friends and family members from all part of my life.  To spend two and a half hours in a room where every face took one back to fond memories from one’s life was an experience too huge to put into words.  But perhaps a post with photos to follow?

And then the biggie – a diagnosis of malignant cancer.  Always a heart-stopping moment. Apparently I have a rare lypo-sarcoma.  It has been growing for two years, misdiagnosed four times.  But most General Practitioners in the UK never see even one in a lifetime, so hardly surprising.  The final diagnosis came all in a rush with hospitals and doctors ringing me at home and general panic ensuing on their part.  Then a rushed appointment in London to see a European expert in this type of cancer.  An interesting diagnosis: huge tumour, but low-grade.  Unlikely to metastasize at the moment, but could change its nature at any point. No help from chemo, radiation or immunotherapy; only extensive, radical surgery.  Prognosis: scar minimum of 12″ with the likely removal of a whole major muscle mass.  It sounded like brutal surgery from the 1970s.  May prevent me from walking again.  Likely to return every two to three years with repeat surgery each time to remove it.  Little research done because it is so rare – fewer than 400 a year in UK.  Healing – a problem: large hole, drains, infections, etc etc I will not bore or disgust the faint of heart with the gory details but they made for ghastly listening.

That sent me into retreat, hermit mode: no wish to share.  I refused immediate surgery as I needed more time to process all this.  It took a great deal of digesting.

Finally I and the surgeon came to a compromise: I insisted on continuing on with a holiday I have planned in October this year to China, while I am still mobile. He agreed to postponing surgery until November this year as long as I have MRI scans to monitor the tumour.

I’m still not sure I can face the surgery.  I have terrible sensitivities/allergies to all known antibiotics, pain killers and anaesthetics with the least reactions being agonising migraines, continuing through to hallucinations, fever, infections and complete collapse.

So, the first thing I did was go on a 19 day water only fast.  Then I have been eating a ketogenic diet.  Just in case these regimes might at least help shrink the tumour a little.  Let’s face it, I have nothing to lose but weight and possibly some benefit to gain.  But the surgeon warned me against offers of help, which will be useless, and cost a great deal.  Nothing like proffering hope;)

More on this topic if I can face it and if anyone is interested in my journey, wherever it may lead.

Then the last few days we have been in the south of the UK visiting the Supervet, a specialist vet, with one of our little Romanian rescue dogs, Eddie, who is written about in the post on 1st march 2016.  When we adopted him we did not know about his current wound problems.  He has suffered much abuse in his life and now we are worried about the wound on his nose.  He had his tail chopped off, was hung from a tree by a metal snare round his waist and left to die, Capture

and finally someone tried to kill him by hitting him over the skull with a metal bar with a spike on it.  They missed his skull and hit the top of his nose instead, hence the hole.

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He was rescued, put on a lorry out of Romania, got to the UK and then us.  Of course we insured him, but predictably the insurance company will not help us as they say everything is a pre-existing condition.

Our local vet knows no-one who can help – hence our visit to the Supervet. We were met by a delightful New Zealand surgeon who sat on the floor with Eddie, and began by saying that everything was possible, for a price.  (I wish my cancer surgeon had that attitude!!)  Eddie stayed overnight and underwent some procedures and now we await the results of tests but we have been warned that reconstructing his nose will cost from £2,000-£6,000.  Now,  we try to be responsible animal lovers, so we will do what it takes: if we have to take out a mortgage on the house we will.  The nurses who all loved little Eddie immediately said, “Go Crowd-Funding” and the surgeon said that he is a very deserving case.   Now I know nothing of such things but they were insistent that I give it a try.

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Do any of you know about crowd-funding, what it is and how to go about it?  My immediate thought is that it sounds like begging, and that is anathema to me.

So, lots going on here.  Some lovely, some dreadful, life’s rich tapestry really.  I’m never too sure what to post because I would hate to depress anybody: I’m not depressed myself, just rather unhappy and over-whelmed at the moment.  But if people would like to follow any of these stories I am happy to write about them.

Over to you folks.  I will follow the directions suggested by any comments:)

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It was some time before I could even get into a vehicle to go and have the MRI. This was a worry but using a fearsome leg brace (all straps, metal and Velcro pads and looking like something from the first world war) I managed with pain and difficulty to get into our son’s car and be ferried to hospital.

I was duly transferred to the waiting area where a nurse enquired whether I had anything metal about my person. I explained about the leg brace and her immediate response was that it would have to come off.  I agreed that in a heavily magnetised machine it would not be a good idea but that it would have  to remain in place until I was lying on the bed of the machine.

She exclaimed in horror that this was not possible as the metal in the brace would interfere with the magnets!! I was equally adamant that I could not move even half  an inch without the brace because of the pain.  Stalemate.

At this point I was getting upset and tired from the efforts I had made to actually get there as well as the pain levels so Isuggested that I went home.

“But you need the MRI”, she exclaimed. Well, yeah . . . .  Duh?

I remained silent and immovable, not hard in the circumstance, leaning against the wall pinned to my crutches.

Luckily she gave up at this point and said she would go and speak to the Radiologists. 20 mins later and no signs of anyone so once more I was preparing to leave: by this time I and the wall had been making friends for over an hour.

When, out of the blue a handsome young chap in his early thirties came hurrying down the corridor and reminiscent of Apollo 13 said, “I gather we have a problem?” He was one of the Radiologists. I explained and he grinned and said there was alway a way round everything and that he  and his colleague were two strong young men and he was sure they could cope. I almost fell into his arms then and there:)

So I hobbled into the anteroom of the MRI machine and was asked to leave my crutches at the door, whereat each chap took an arm and I was regally escorted, hopping like a rabbit, towards the magnets and the flatbed of the machine.

Very slowly I inched my way onto the couch, oohing and aaahing the while until finally the leg was in position.  Then the fun began.  I was just about to remove the brace when they urgently asked me to stop.

The lovely blokes said that they would have to take the leg brace off together, on the count of three, one holding each end to avoid it being whipped away and dragged towards the magnets and into the machine.  The whole process was so funny as they gingerly undid the straps while holding onto the body of the brace for dear life and then in one smooth movement pulled it away and took it out of the room.  So gentle, kind and understanding and making no issue of the process at all.

From then on all was plain sailing and an hour later I was ringing to ask for my lift home.

The results came back ten days later, I do not understand them yet but I gather that a lot of damage has been done and I have been referred to an Orthopaedic consultant. Given that I have allergies to painkillers,  antibiotics and anaesthetics I am unsure as to my options.  However, one lesson I learned from this scan was that with a willingness to find a way through hopefully all is not yet lost:)

Here’s a toast to helpful young men (and women) wherever they may be. Cheers chaps!!

 

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Some years ago, about ten I think,  I used to go once a week to Tai chi classes.https://i2.wp.com/universal-taichichuan.com/files/2012/02/4562010817.jpg

Image from  http://universal-taichichuan.com

They were held in the hall of a local Synagogue and led by a chap who trained in China and is employed by both our local, large  hospitals to help people with rehab. after cardiac surgery and allied problems.  His reputation was excellent in the UK and I was lucky to find him considering how many people teach Tai chi here in Sheffield.

A huge mix of people went and I really enjoyed them.  All ages, all types, all interests.  After our Beginners’ Class, a Senior class came in carrying very long poles and we left feeling intrigued and a little intimidated by the Big Girls and Boys!

Image from  www.chinashaolins.com

However, my teaching load became such that I had to give up going.

For the last year I have been toying with the idea of going back, if the classes still run.  But my balance issues were so bad that I could not imagine being able to manage even the simplest exercises and then my eyesight deteriorated: and trying to balance with one eye takes a lot of practice.

Last Tuesday I saw two consultants.

In the morning I saw the Neurologist to whom I had been referred two years ago  for possible MS.  After various scans and tests MS was ruled out (sigh of relief)  and he suggested that I give up gluten.  On 3  gluten intolerance tests, I had come up each time as bordering one side or the other of the cut-off point.  Apparently a sensitivity to gluten can make you lose your balance and muscle strength and fall over.  I gave up wheat years ago but did not realise that rye, barley and oats all had significant amounts of gluten in them.  At the time I was very surprised to hear any dietary modification suggested by a mainstream doctor in the NHS for other than diabetes or weight control.  For some months now I have given up all grains, pulses, legumes and sugars: so no fruit to speak of and few potatoes.  And my balance has improved greatly.  Last Tuesday I managed, effortlessly, to do all the tests the Neurologist wanted, which I had been unable to manage on my last two visits to him.  Yippee.

In the late afternoon I saw the Opthalmic surgeon who operated on my eye.  The hole has closed!!  Yippee again.  He congratulated me on my ‘patient compliance’ which has a large impact on the closure.  However, I also think the skill of the surgeon is not to be discounted;)  I will have to have a cataract op. in the next six months but not until the eye is stronger and we have established the max possible vision for that eye.  He expects an increasingly improving quality of vision, to be followed by a decreasing one as the cataract forms.  But then we will know how good it got before the cataract.  So pats on the back all round.

Now, perhaps, is the time to go back to my Tai chi classes.  Tai chi helps strengthen muscles and balance, as well as having  numerous circulatory benefits so it seems a no-brainer.

Returning grandson to his father last Friday night (we always spend Friday evenings together) I learned that two weeks ago the pair of them began going to Tai Chi classes.  The same chap, the same venue, the same class that I used to go to!  Given that Dave, the teacher, holds lots of classes on different days, and at different times, and in different places, I did laugh.  Son had forgotten that I used to go, and grandson never knew: they pleaded for me to go back to the classes – it would be fun!  I just laughed.  But when I got home I rang Dave and he said, yes just come along again, same as before, he would be pleased to see me.

I am just going to turn up without telling them.

Now,  think of the limitless possibilities for embarrassing the younger men in the family.  Bring it on:)

Image from  http://sarawakiana.blogspot.co.uk

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OK.  I will draw a veil over the first three days post-op.  I imagine most of you will have been there one way or another.  Suffice it to say that the eye only gave trouble for the first 24 hours: otherwise it was physiological shock, migraine and muscle and skeletal pain from the ‘posturing’ which was seriously bad.  Not being able to take painkillers made my particular situation rather difficult.

There were one or two episodes when I just wanted to throw myself around the room bouncing off the walls: the poor dog slunk under the bed and refused to leave my side and the poor parrots went completely quiet and still for 24 hours  solid despite only seeing me for a few minutes as I came through the house.  Amazing how animals pick up on these things.

By the following Tuesday the migraine left and I became human again!  One week on and the eye looked like something from Alien.  I had not dared look at it before but husband said that it was much better than at first.  It hurt too much to take a photo because the pupil was so dilated but basically it looked like a massive dark hole (the enormous pupil) floating in a sea of blood.

To protect myself from accidental views and the public in general I kept the bandages on!!

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Sorry about the flash I could not work how out to turn it off

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Actually, although I was only instructed to keep the dressings on at night, since I have to protect the eye from heat, cold, wind, dust, grit, light etc. it seems simplest to keep the eye covered up most of the time.

Now, two weeks on, the eye looks pretty normal, thank goodness, just the eyelid is still drooping.  It feels sore around the outside and I have a slight black eye but I am adapting an eyepatch with a skull and crossbones to wear for when I can go out.  I have seen the surgeon twice and he is pleased with progress.  No bleeding, infection or changes in pressure.  In fact I have been able to dispense with some of the  eyedrops already!  He did say that if my eyes were dry I could buy some artificial tears to help keep them comfortable but I said I would just play a ‘weepie’ DVD.

Sitting room set up for viewing TV screen while face down.  Note neat two way mirror constructed by husband and massive blue bag of DVDs from son.

 nikon transfer 024

I can see nothing out of the eye because of the gas bubble and similarly the surgeon can see nothing inside: his verdict is that I will not know what my vision will be like for about four months and there is no way of knowing if the hole has closed yet.  The waiting will be difficult but I am assuming the best for now.  I still have to sleep on my front all the time and must not look up or lean back as the bubble must be kept pressing on the back of the eye.  Sleeping is very difficult so I am resorting to frequent power naps during the day.  Driving is not possible for some weeks which is a bind but I am hoping that friends and family will take me out for some trips: good practice for when I am an old lady.

photo from  http://www.retinavitreous.com

doctor cohen in srugery

At my  last consultation I asked him about the techniques he used: I had seen the massive binoculars etc. and wondered whether the tools he used were geared down by some robotic arm to match the magnification.  But no.  Extraordinarily, he made three incisions that were each half a mm in length, hence me needing no stitches, and through these he inserted a light, a guillotine and some scissors: each tool was smaller in width than a hypodermic needle.  He said that the guillotine moved at five thousand cuts a minute and one is being manufactured at the moment which will be able to make ten thousand cuts a minute.  It is mind boggling that such precision tools can be made, but even more so that he could manually use them in such a small space and with such dexterity.  He did admit that he never drank coffee on days on which he was operating and always made sure he had a good night’s sleep, just to make sure his hands were  steady!!!

So all’s well here: just tunnelling through the lack of sleep and being even more clumsy and unbalanced than usual with only one eye.  Still, at least the weather is not conducive to gardening so I am not missing too much yet.  I have seed potatoes chitting and packets of seeds awaiting the warm weather, but at least I am not tempted to bend, which is against all the rules.  And I do have the most lovely surgeon ever who I am next seeing on 7th May:))

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Well! Of course things had to be complicated.  I began a migraine on the Tuesday which was still going very strong on the Friday of the operation.

I have discovered one very good thing about bad migraines.  You feel so dreadful and wish death would provide a blessed relief, so that you cannot worry about anything else.  I never had any twinges of worry that week about the op. my only concern was that I would be well enough to have the procedure.

And then of course, on the Thursday, it began to snow.  And snow.  And snow.  18 inches of snow.  By Friday we had got to the stage of working out which farms had Landrovers and could take us into the hospital.  And then we rang to see if the surgeon had been able to get in.  He had, by dint of walking for five miles:  the staff said “If you can come in, we can do the operation”.

At lunchtime a neighbour with a landrover took us in, me all bundled up against the cold wearing sunglasses because of the migraine and chewing on anti-sickness tablets so I would not be throwing up during the op .  Complete with overnight bag in case we could not get home again afterwards.  The only other vehicles on the road were tractors and snowplows: our driver was not used to driving in snow having been brought up in the Channel Islands but she took it slowly in as high a gear as possible and we got there, passing stranded cars and buses on the way.  Bless her, she then stayed the whole time so that she could try to get us home at the end.

I was so impressed!!  No wonder that this unit is internationally renowned.  The reception area was dim and quiet and comfortable and so clean: there was an overall impression of quiet, calm efficiency which was very reassuring.  After a short wait I was taken with husband to a private room with bathroom which had been washed down with soap and water, including the furniture, because of my allergies.  There was a notice on the door restricting access to all except for a designated nurse, the surgeon, us and the aneasthetist.  Our nurse had similar allergies to mine where disinfectant and hand wash are concerned and had to carry her own special supplies in her smock.  That was a very thoughtful choice of staff it seemed to me.  Outside there was a large area for patients and family while recovering from operations, where people were lying or sitting with cups of tea.  For an hour and a half I had loads of different drops put into my eye every fifteen minutes or so, and had to undress and put on surgical gowns.  Richard, the surgeon, came in, crouched down beside my chair and said he had been  awake in  the night worrying in case there was anything he had overlooked in the procedure which could possibly impact on my allergies.  I was both impressed with his commitment and moved with his honesty and caring. Then a very burly male nurse called Damien (thoughts of the Omen) came to lead me to the operating Theatre.

Damien suggested I  get on a trolly to go into the Theatre but the anaesthetist came out and said not to bother with that, just to walk in and hop on the bed.  So I did.

Previously I had spent some time compiling a Playlist on my MP3 player of music so wonderful that it could lift me out of the moment.  I had been playing it the whole time I was waiting, and walked into the room clutching it to my beating heart.  You probably all know the scenario which greeted me: a room full of staff all in scrubs, small, narrow bed, huge lights and massive binocular equipment over the operating area.

Up I hopped, and asked for some blankets as by now I was really cold with nerves and the headache.  Damien packed me in, put my head in the sculpted mould, fixed me in place with wedges down my sides and began to look for a vein.  I explained which ones he could use and which he could not, and for the first time in my life, I was listened to.  (The anaesthetist was there in case I got into trouble with my allergies and wanted a line in so that he could act fast if necessary).  The surgeon got ready and chatted in a very friendly manner: he asked what was on the MP3 player because if it was Guns n Roses would I please turn it up for him to hear too.

So far so very good, and kind and friendly.  But the next part was bad and please do not read on if you might be bothered by such things.  I hasten to add that these were my personal experiences and may have no bearing whatsoever on any procedures anyone else may have.  Also bear in mind that I cannot have normal anaesthetics: there is only one dental, local anaesthetic that can be used on me.  So I am an oddity from the off.

The time had come for administration of the local anaesthetic.  All the websites I had researched in the USA mentioned sedatives, being ‘put in the Twilight zone’ and /or being knocked out for a couple of minutes only, just while the ‘local’ was put in.  None of the British hospital websites mentioned this, and indeed it is not the custom over here.  There is nothing to help with this.  The surgeon was quite candid.  “This is the worst thing I am going to do to you today and will make your toes curl, so hang onto Damien’s hand for all you are worth”.  It was ghastly.  He put a clamp over my eye to keep it still and open and began. He explained that he was making a channel around the eye to get to the back, near the optic nerve, to insert a cannula for the anaesthetic to disperse down.  You know the dental injections which go between your jaws right along the back of your mouth and seem to go on for ages.  Well it was reminiscent of that, except you could feel it going around and behind your eye, pushing and pushing, and hurting.  It probably only lasted for a minute or two but it felt like hours and poor Damien’s fingers, I feared they would be crushed.

We then waited for it to work while they washed the area down, put a cloth over the rest of my head and gave me oxygen to breathe under the covers.  I had a blood pressure cuff on one arm which went up and down every five minutes and a heart monitor bleeping away.  The surgeon, Richard, asked for that to be turned down, and I agreed saying it was not matching the beat of the music I was listening to, so that would be great!  One of the other surgeons wondered why my heart was not changing to match the beat!! Once my eye muscles could no longer move they began to operate.

The nurse at the pre-op appointment had said that people could sometimes see a light or a kaleidescope of patterns during the op.  Not me.  Oh no.  Perhaps it was because I had to have a dental anaesthetic rather than one of the usual ones they use for this procedure, but I could see the instruments in my eye, and could see the vitreous gell being sucked out.  And although it did not hurt, the pressure on the eyeball as they put the instruments in was horrid.  Frankly, if I could have been knocked out I would have preferred it.  From time to time I became very panicky and wanted to jump up, throw everything off and just run out.  I turned up the music, which was a lifeline.  I counted the blood pressure cuff movements to work out how long to go, I tried every kind of mental displacement activity I could think of just to avoid the panic.  At one point Richard said that he was just going to give me some more anaesthetic because he notice me twitching a bit!  Once the gell was out he said that now was the trickiest part of the op. and please not to move a muscle for ten minutes while he peeled off the membrane.  Most of that was OK but then he had to snip it off where it met the edge of the retina and that HURT.  He said “Grit your teeth for a bit now and hold onto Damien”.  It seemed to go on forever.  First one side and then the other.  In retrospect I wonder whether Damien was there for me, or to hold me down if I tried to object:(

Then, mercifully, it was over.  Frankly I am not sure how much more I could have coped with.  The atmosphere in the room relaxed, dressings and drops were put in place and I was helped up and out to general smiles all round.  Richard said it had gone really, really well with no problems or complications and congratulated me on being really still throughout.  I tottered back to our room, refused the cup of tea and biscuits and got dressed.  All I wanted was to get out of there and go home.

I felt dazed, and as if I was a battered refugee from a war zone.  It had been SO invasive and I felt really bruised and pummelled and actually rather shocked.  But everyone had been so kind and so lovely that I felt I should not be feeling as I did.  It had only taken an hour and poor husband looked very shaken.  I think he had been really worrying the whole time that things were going OK.  My first words were, “If you ever need this doing, ask for a general anaesthetic”.  It really had felt ghastly and taken all my endurance and will power.

Somehow, one cannot get away from one’s eyes: a similar procedure on a toe for example might be painful but a little more removed.  Eyes are so intimate, and every instinct is to run from anything coming towards them.

We were given instructions by our lovely nurse, and a bag of three kinds of drops to put in four times a day for a month, with instructions to come back first thing the next morning to see the surgeon again, and we were driven home by our neighbour through the quiet streets, once again passing stranded vehicles.

The migraine was still pounding away, and of course it was in the eye that had been operated on.  Optimistically I had assumed that once the local anaesthetic was in place I would have relief from the migraine for a while: interestingly, it had no effect whatsoever on the migraine pain.

But still, it was over, done and dusted.  No more waiting and worrying.  And I had been in the hands of kind, talented staff who could hardly have been more caring.

And I would willingly go through much worse to keep my eyesight.

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WARNING.  THIS POST CONTAINS GRAPHIC IMAGERYAND MEDICAL DESCRIPTION.

As readers of this blog will know I recently had a vitrectomy operation to mend a macular hole in the back of one eye.   A macular hole is, I gather,  a relatively uncommon cause for loss of central vision with the first symptoms being distortion of vision, which soon progresses to a blind spot in the central vision and leads eventually to a black hole with a little peripheral vision remaining. Initially, the symptoms of macular hole resemble those of macular degeneration, but macular degeneration is a totally different problem although it occurs in the same place as macular hole.

A vitrectomy is performed in an operating theatre, usually under local anesthesia, where the vitreous gel is removed from the eye to permit access to the macular layer.  The surgeon uses a fiber optic light to illuminate the inside of the eye and other instruments inside the eye, such as forceps, and scissors, to do the surgery,  inserting them through tiny incisions of about 2mm or less, sometimes necessitating stitches afterwards. Image from Google images.

Once the vitreous has been removed, the epiretinal membrane is peeled off, the vitreous is replaced, in my case with gas,  which completely fills the eye – thus holding the lens in place until the eye has had time to fill up the space with body fluids and holding the macular in place so that it has time to heal, and close, hopefully. To enable this to happen one must ‘posture’ face down for several days and nights so that the gas bubble presses against the back of the eye, thus holding the tissue in place and preventing fluid leaching through the hole to the retina.In this position, the force of the bubble seals the hole.

Images from Google images

There are several companies that provide equipment to support patients in maintaining the face-down position and I have hired equipment similar to those pictured here.

Over time, the gas is absorbed by the eye and replaced by the eye’s own fluid; the eye does not replace the vitreous itself. The lack of vitreous does not affect the functioning of the eye.  Apparently.  Or so I am told!

After surgery, the bubble will fill the eye, causing blurred vision when looking straight ahead.  Over time, the bubble dissolves and is absorbed by the body. It may appear as a line in the vision and then gradually get smaller until one day it totally disappears. The time to dissolve depends on the type of gas used. While the bubble is present, one is restricted from flying in an airplane and from going to high elevations because this may cause the bubble to expand in the eye, resulting in severe glaucoma and loss of vision.  I was told to avoid elevations over 1000 feet.  Since we live at 750 feet and the local farm is at 1200 feet this makes life interesting.  Other restrictions are not to bend over with the head lower than the heart, not to lift heavy objects, not to look up and reach up, and to have frequent medical checks for bleeding, changes in pressure in the eye and infection.

I gather the surgery for macular hole has a success rate of over 90%: my surgeon said he had a success rate of 92%. The visual outcome depends a lot on how soon the surgery is done and how well the patient complies with face down positioning. The better the vision is before the surgery, the better the chance for a good outcome.

Vitreous surgery usually lasts one to two hours but, with very severe and difficult problems, may take longer.  I will let you know how it actually was for me in my next post, but clearly I am over the worst, since I am blogging again.!!!

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