Saturday, December 5

If something sounds too good to be true - it probably means that it is,

In the comments on my post about my eyesight problems many of you requested that I keep you up-to-date with any progress.

I'm afraid the news isn't particularly optimistic. I attended a consultation in Manchester regarding the possibility of lens replacement which seems to be my only option. The procedure sounded to be very straightforward and safe and it would give me almost perfect eyesight without the need for glasses or contact lenses. 


After extensive tests on Friday, it  was revealed that my eyes are  very long and therefore there is a high risk of retinal detachment if I go ahead with the surgery. In fact the advice was that I should think in terms of when the retina would detach rather than if.

The surgery involved is the same as it would be for a cataract operation and one of the comments was that it wouldn't be considered for me if I was younger due to the level of risk. The reason behind considering it for me was that at some time it was certain that I would need cataract surgery even though at the moment I have no signs of any cataracts developing. Apparently that the result of living longer is that we will all end up with cataracts. The thing is that this point, if it is reached, could be a good few years off.

I have been referred to another ophthalmologists who specialises in retinal issues but to be honest the whole discussion scared me. It seems that the best advice he would give would be to proceed with extreme caution. It seems that there is a very high risk involved and so I am left with the dilemma of what to do. At the moment I feel the risk is too high as any type of eyesight is better than none at all.


I just wish the optometrist had told me that the whole thing was too risky and that it couldn't be carried out. I guess the bottom line is if I make the decision to withdraw I lose my deposit whereas if they make that decision I get my deposit back. Am I being too suspicious in thinking this is why the decision is left to me?

I am now trying to investigate if there are any other options. It's all a bit traumatic. Fortunately at the back of my mind I had the feeling that something would put a spanner in the works, it's just the fact that they seem to be saying we can do this but there WILL consequences that is difficult. 

At least I am learning how to use speech recognition instead of typing. I can take photos though and have added some of our journey across the Pennines and the Christmas market in Manchester to stop the post being too miserable.

49 comments:

  1. I'm sorry to hear that things didn't go as you'd hoped. I suppose there's always some risk with any sort of procedure but the fact that this seems extra risky and that they're leaving the decision with you makes is extremely difficult for you. I should wait and see what this next special has to say, you often get conflicting opinions. I do hope they can suggest something more positive.

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    1. I have decided not to go ahead consultation I don't think anything would make me feel confident even if he said it was OK Jo because after that and from what the optometrist said the best he would say was to proceed but with extreme caution which is hardly reassuring and I would also have wasted a fee for nothing

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    2. Individual Consultants can have very different areas of expertise & widely opposing opinions, maybe helping to put things into a broader perspective for the future.

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    3. To be honest S and D I've lost confidence another opinion would be just that only an opinion and now the spectre of blindness ga been let out of the bag.

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  2. I tried to find a way to contact you (privately) re your eyes but couldn't find your email address.

    Anyway, if there's a way for you to get my email address (from your end) then please do email me if you'd like the name of the best person to speak to about your eyes. I recognise and totally sympathise with what you're going through atm re your eyes and I believe I may know the very best person in a position to help you.
    I'll gladly pass you his details.
    Best wishes,

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    1. Thanks for this I can't pick up your email but my contact is on the sidebar near the top.

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  3. I am so sorry to read this Sue. I think they have put you in a position of a very difficult dilemma. And yes, I would be suspicious too about the deposit given the way they put the onus on you. It sounds so cruel the way they gave you such hope only to suck it away later. I agree, some sight is better than no sight given what they have said. I know you will investigate every option available and wish you well on this path. Sending healing light for the situation and for guidance, for you and those to whom you must speak.

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  4. Sue, it sounds as if you are in a difficult position. I'm so sorry, and I do hope you find the best way forward. As I mentioned before, my eyesight is very similar to yours, extreme shortsightedness, so I suspect I will be facing this dilemma in due course. Best wishes, CJ xx

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    1. One fpof my eyes is -26 CJ, up to -20 thinner lenses are available so hopefully you will have less of a problem. Whoever I see acts as though I am a rarity.

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  5. Oh, Sue, I'm so sorry that the news was not better. I would not give up on doing your own research especially as now you are more fully aware of what your situation is. Sending good thoughts to you and hoping that you are able to find other possible solutions that are more optimistic.

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    1. To be honest earlier research sort of prepared me that it could be a problem, Margaret ut I was more prepared for then to,just sat "No" rather than a these are the risks it's up to you

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  6. Oh Sue, what a difficult decision. I can quite understand your reluctance to go ahead. Can anything be done to make your glasses more efficient or your lenses more comfortable to wear? I would imagine you've already been down that route.

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    1. I,am still,exploring the thinner lenses for glasses lint, Jessics but keep getting replies stating, ""We do not cater for your prescription" Maybe there are not enough potential customers to make it a viable proposition.

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  7. Sue, I'm so sorry to hear this. I hope you find the route to take and that all goes well. You have a lot of people that care. Please keep posting updates.

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    1. Thank you, , Sue I think I am running out of options to explore.

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  8. Oh....I would be extremely cautious too, more haste, less speed....Keep researching, get that second opinion, the more info the better! Money lost is one thing, eyesight lost is everything!!! Take your time about it all, and check in here to let us know how you are getting on! Good you have speech recognition sorted!!! You look after you girl. xxx

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    1. I've decided against the second opinion, Dina as now I really don't feel I would be confident to go ahead whatever the second opinion was.
      Speech recognition is a real plus, especially now that having had my contact lenses out for a long while in order to change my prescription neither the contact, lenses nor the glasses are the correct prescription for me.

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  9. I'm so sorry to hear of this Sue & it's an awful situation for you to be in. I do know from the dealings I had regarding my dads eye care that opinions do vary greatly. I do hope you are able to come up with a suitable solution for you. Take care xx

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    1. It's like with everything, Jo one negative opinion tends to colour how you feel about something. No amount of positive opinions can then remove that niggling doubt. This is especially true when it comes to issues about your sight.

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  10. I agree with Snowbird, Sue. It seems a difficult decision to you.
    There are very good specialists here having experience in ophthalmology, here is the address:
    http://www.mntk.ru/
    It's easy to translate in google translator and there is Contact Feedback Moscow
    info@mntk.ru So you could know one more opinion!

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    1. Thank you Nadezda I will definitely read the link.

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  11. My wife Brenda has similar problems - she has dry macular degeneration and another eye condition - as I write she has just poured the coffee into the wrong jug!
    Her cataracts are not too bad but the NHS are reluctant to operate because of the other conditions.
    Our local York NHS eye hospital is wonderful

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    1. Surely your opthomologist if he has discovered it is not safe to go ahead should give any deposit back and do no more than charge for a consultancy.

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    2. In her opinion I think she feels that the risk is worth taking, Roger. It is up to me now whether I agree with her or not. If I don't want to proceed then I lose my deposit. If she had decided not to continue then I would have my deposit returned. It is quite easy to decide the risk is worth taking though when it isn't your eyes that are being risked isn't it?

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  12. Hi Sue, Doing an online catch-up only to come across this. I just want to add my voice to the others supporting and encouraging you. Mal

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    1. Thank you, Mal - it is frustrating being a freak of nature :-(

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  13. Hi Sue,

    Re emailing - not sure why but when I click on up-top on right it tells me 'function disabled'? Probably something to do at my end but I'm not techie enough to know how to overcome it. Not sure what else to do now other than if you post your email address in response to this message? Re your eyes etc.
    Best wishes.

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    1. Thanks for trying - My email address is greenlaneallotments@hotmail.co.uk strange that it wouldn't let you access

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  14. Sue, I feel for you – I have had similar dilemmas on quite a few occasions having been offered operations to improve my walking and reduce pain, but been told there are high risks involved every time. In the end it’s all down to us as patients to say yes or no to an operation, despite that we are the least qualified to make decisions on risks and outcome. I have found it very difficult at times and have said yes to some and no to other – not knowing what I have missed, and regretted some I have said yes to.

    I also have problems with my vision with very heavy glasses and had an eye operation at Morefields in 2003 to enable me to use contact lenses at least part of the day to ease some strain on the skin of my nose. After the op it turned out not possible to use lenses after all as I have a very unusual eye shape so the lenses would not stay in. No one had thought of checking that before I had the operation, and I am left with a visible scar on the sclera only less than 1% of people get.

    I hope you get all the information you need to make a good and for you – correct decision. And if you don’t do it now, there is probably no time when it will be too late, you can always come back in a few years’ time and consider it again.

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    1. I have decided not to go ahead with the transplant procedure come early because in many ways even though I may end up with a detached retina at some point, later is better than sooner in this case.
      I have found a company that specialise in contact lenses and offer quite a wide range. They even make soft contact lenses for prescriptions like mine. They also claim to be able to fit awkward prescriptions so maybe they could help you. They are based in Birmingham and I have decided that I will wait until after Christmas and then pay them a call. I would like to try and get the dryness in my right eye sorted out first. So far though no luck on the glasses front. One company said they make the thin lenses 1.9 only up to a -25 prescription and I am just out of range which is very frustrating. They say that to make a higher prescription is technically impossible. I'll just have to keep looking.

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  15. Sue, Hope you can find some solution. Do not take too high risk. Hope they give you back the deposit.

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    1. I won't, Malar. There is really no chance of getting my deposit back I'm afraid. They would argue that this was the cost of taking all the tests. I suppose they would be right..

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  16. Sorry to hear about all this, Sue. I am on holiday in Mexico at present and have been a bit out of touch... I am always very suspicious of the medical profession these days, especially when money is involved, because I think so much of their work is aimed at making a big fee rather than curing the patient. Here's hoping for a successful outcome for you.

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    1. I hope that you are enjoying your holiday, Mark. At least I have just received my iScan report which at least is checked out the health of my eyes and nothing untoward has cropped up.

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  17. Sue, I read your blog regularly but don't comment. But I had meant to comment regarding your vision. I come from a family where many are severely miopic. In the San Francisco bay area, you can purchase very thin lenses for your glasses. It's just a matter of money unfortunately. The glasses you displayed on an earlier post can be made thinner, much thinner. Probably wouldn't take more than week to make. Ocularium on Chestnut St. is where most of my family goes, but there are many others. Just bring your own frames. Frames here in S.F. can be pricey. Time for a vacation to S.F.? Regards, Rebecca.

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    1. Thank you for taking the time to comment, Rebecca. I have made various enquiries about thinner lenses and at one point was told that it was technically impossible to make a thinner lens for my prescription. Your information proves that this isn't true. Before I come along to San Francisco I'm going to hassle a few manufacturers in the UK and I can cite your message as proof that it can be done. Thank you

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  18. What a dilemma for you, Sue, I'm sorry. I am no doctor, but my mum was registered blind, so I know through her how very precious any sight is. Someone may have already mentioned speaking to the RNIB to find out about other people's experience with your issue. Someone, somewhere will have had to take a decision like this - or may be able to point you in the direction of somebody who can help. Wishing you all the very best.

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    1. I've made the decision not to go ahead, Sarah but I have found a independent optician locally who may be able to improve on the glasses. contact lenses situation and I have made an appointment for next week. They are not tied in to specific suppliers as the big bits are and also specialise in dry eye problems so fingers crossed again.

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  19. Oh you are faced with a difficult situation Sue to say the least. I can understand your decision not to go ahead with the surgery. I hope that there may be some other alternative route you can take. Will be thinking of you and wishing that there is a solution out there.

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    1. I have found a local optician that specialises in dry eye treatment, Anna so I am hoping that he can help. I have an appointment on Friday. The aim is to be able to wear contact lens is again if possible and back up with some thinner lenses glasses. Not sure what to do if that doesn't work

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  20. The thought of losing your eyesight through surgery must be very frightening, Sue and I can empathise with your decision not to go ahead. My optometrist discovered last year that I see wobbly lines with my left eye and I was despatched off to Moorfields Eye Hospital for a check up. Apparently I'm at risk of losing my left eyesight through Wet Macular Degeneration in years to come. Not a comforting thought for my old age and I've been necking down bilberry tablets ever since! (The alternative is injections into my eye which I'm too squeamish to contemplate for now.) I do hope that a solution will be uncovered for you - the comment about thinner lenses is a good one and worth pursuing. Very best of luck with this, my friend. Caro x

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    1. I am really sorry to hear about your problems too, Caro. I use drops to keep my eye pressure lower as I have a very high natural eye pressure which can cause a problem later on regarding macular problems. Do you use eyedrops? I'm not sure whether wet macular degeneration is treated in the same way though I know injections today I sounds dreadful but surely they would anaesthetise I before they did that. I was quite prepared to have little incision making in my eye and the lens removing as they told me I wouldn't feel a thing. If the spectre of retinal detachment hadn't cropped up and the possible dire consequences of this then I would've happily gone ahead.

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  21. I'm desperately sorry for your situation Sue. I empathise with the worry about losing one's sight: I was quite overwhelmed when told that without surgery, fast, I would go blind. It is like a cold hand clutching one's heart.
    People come from all over the UK to our Eye Department in the Royal Hallamshire Hospital so if in the future you are ever faced with making more decisions one option might be a second/thire/fourth opinion here. If you are interested I can let you have the name of the surgeon who rescued me. He is honest, will tell the truth, and give all the options. He is also a superb surgeon.
    However, for now, enjoy Christmas and I hope you manage to get your thinner lenses. Thinking of you. XX

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  22. Thanks for that information, Sweffling. When I went for the assessment in Manchester they told me that if my retina detached, which it still at risk of, I should go straight away to A and E ar Manchester Eye Hospital. When I said but I live in Wakefield she said still go to Manchester. Apparently a detached retina needs dealing with within 24 hours to save as much site as possible. This being said Manchester seemed a long way to go from Wakefield but she seemed to suggest it was the only option. Sheffield could be much more convenient for us.

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  23. I'm sorry about your problems! I hope everything will be alright!
    Greetings

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  24. So sorry to hear this sue, and I echo everyone sending you all the very best wishes. I have a 'lazy' right eye with very poor vision. I've been told I could have an op but would risk double vision, so am not pursuing it, though the eyesight in my 'good' eye gets worse every year. Anyway, I hope you get some good results on the lenses /glasses, it's great to hear how your research has progressed down the comments list plus lots of useful suggestions from people.

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    1. Thanks, Lou. Sorry to hear that you have your eyesight problems too, it's amazing how many people seem to have these sorts of problems. I do feel that eyesight is one of the things that the NHS don't cater for very well. Having poor eyesight is a very expensive thing. My appointment with my latest optician is tomorrow so we will see how things go from there.

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