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Been told my sight will not get better

janer1967janer1967 Member Posts: 11,138 Disability Gamechanger
Hi all 

Been to see consultant today after having course if 5 injections in my left eye to help reduce a swelling .

I am blind in my right eye 

I was hoping after these injections I could have my cataract surgery to hopefully improve my vision a bit 

They are still considering the surgery but he told me this would have no real impact on my vision and to accept it wouldn't get any better . The main objective is now to preserve the little vision I have 

A bit gutted to be honest as well as scared I will be totally blind at some stage 

Replies

  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    @janer1967 oh gosh so sorry that's awful and scarey I was scared when I I was waiting for my eye operation I couldn't see I am resly realy sorry x
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,998

    Scope community team

    edited March 10
    I imagine you’re feeling quite overwhelmed right now @janer1967 and feeling scared is a perfectly normal reaction. 

    I don’t know if it’ll be of any interest to you but RNIB run courses aimed at boosting confidence as well as peer support and practical advice and information

    I’m not the best person to advise on it but I know there’s a lot technology out there which will help you maintain your independence. 

    Have you shared the news with your son or people around you?

    I won’t pretend to have any idea of the thoughts that must be going through your mind but please know we will be here to support you in any way we can. 
    Senior Community Partner
    Scope
  • Ross_ScopeRoss_Scope Posts: 4,114

    Scope community team

    Sorry to hear this @janer1967, I hope you are managing okay.

    I hope they can preserve your vision for as long as possible, but if you do end up losing your vision completely then you will still be able to lead a super life I'm sure. The RNIB living with sight loss courses are a great way of preparing for such eventualities and gaining valuable skills to combat sight loss.

    I often worry about going completely blind one day, but that worry has been eased somewhat by the fantastic technology we have access to these days.  However I do understand how you must be feeling right now, especially after going through all those injections. It seems as though you have a supportive medical team around you though so I'm glad about that.
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  • janer1967janer1967 Member Posts: 11,138 Disability Gamechanger
    @Adrian_Scope yes I have told my son and as usual know he will step up if needed 

    I was referred to the sensory team over 5 months ago but had no contact from them ti get support and assessment so will need to chase this up now 

    Thanks for you kind words and support 
  • mikehughescqmikehughescq Member Posts: 6,575 Disability Gamechanger
    @Adrian_Scope the Living With Sight Loss courses are a bit weird. Run by different organisations in different parts of the country not just RNIB. So, for example, in parts Greater Manchester they’re run by Henshaws but in others it’s RNIB. Mixed bag too. I’ve been on both sides of it. Ran the benefits sessions for years and the transport session on one occasion but also took part as a participant in my local one. Useful for sharing experiences but much less so for accurate info on the range of subjects they purport to present. 

    @janer1967 sorry to hear your news but glad you’ve shared it. Total blindness presents a different set of issues to being partially-sighted but the change is often not as dramatically different as you would think. The temptation is to build it up as a huge thing and use that as a reason to not explore the many things you can put in place now because it seems so potentially overwhelming. Use your time wisely now though and you’ll find much to occupy you for the future. 

    There are massive sensory waits all across the UK but with a little lateral thinking you can pretty much explore all the aids and appliances they might present as choices. The only thing you won’t be able to replicate would be navigation cane training. 
  • janer1967janer1967 Member Posts: 11,138 Disability Gamechanger
    @mikehughescq

    Thanks for the reply and sorry to tag you 

    My issue is along side my sight issues I am also wheelchair bound so dont think white cane will help unless I'm wrong 

    I am an amputee unable to use my prosthetic leg due to my vision balance and knee not being strong enough . I also have no feeling in my other leg so cannot feel uneven ground or see it 

    I need to do some research while I can still see to find out best options for me and that is a reason for hoping sensory team would be of help

    Any other suggestions would be appreciated 
  • mikehughescqmikehughescq Member Posts: 6,575 Disability Gamechanger
    I think I’ll let you off on that tag @janer1967 seeing as you’re replying. That doesn’t count :)

    Yes, I agree, navigation cane unlikely to assist. I suspect that’s a conversation with more than sensory. Some interesting options around wheelchairs that can do some seeing for you in the sense of recognising obstacles, and also with dogs as a navigation option. 
  • Sandy_123Sandy_123 Member Posts: 1,538 Pioneering
    @janer1967 I'm so sorry to read about your visit today with the consultant. I can understand you feeling scared. The operation might be better then they expect. Fingers crossed.
  • woodbinewoodbine Community Co-Production Group Posts: 4,437 Disability Gamechanger
    @janer1967 sorry to hear you have had bad news today, hope you know we are all here for you x
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • Cher_ScopeCher_Scope Posts: 3,990

    Scope community team

    edited March 11
    Hi @janer1967

    I'm sorry to read this :(  That must have felt like a bit of a punch in the stomach and my heart goes out to you.  You have been so brave having those injections, you never make a fuss and are exceptionally courageous.  I'm always here should you want to talk or vent though, as are all your friends on the community  <3  All you have to do is say and we will do our best to support you.

    Also, it's so nice to put a face (your profile pic) to the words I've seen on screen.  You look lovely and are just as I imagined you would be! 
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  • janer1967janer1967 Member Posts: 11,138 Disability Gamechanger
    @Cher_Scope thank you for your kind words 

    Thought it was time I put a pic on lol now it finally let me 

    I am trying to get my head around it all and what it could involve and thankful for the support in here 

    Will be busy researching all things that can help me and already contacted sensory team to chase them up but let's see if they get back to me 

    Lots to keep me busy 
  • janer1967janer1967 Member Posts: 11,138 Disability Gamechanger
    Thanks to all of you for your support 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,998

    Scope community team

    edited March 11
    janer1967 said:
    I was referred to the sensory team over 5 months ago but had no contact from them ti get support and assessment so will need to chase this up now 
    I hope you manage to get some support from them soon. I know a lot of services are reduced (my son's speech therapist was redeployed to help at our local hospital!) and waiting lists have grown, but things do seem to have started moving again. Fingers crossed you're not waiting much longer. Always worth chasing though!

    @Adrian_Scope the Living With Sight Loss courses are a bit weird. Run by different organisations in different parts of the country not just RNIB. So, for example, in parts Greater Manchester they’re run by Henshaws but in others it’s RNIB. Mixed bag too. I’ve been on both sides of it. Ran the benefits sessions for years and the transport session on one occasion but also took part as a participant in my local one. Useful for sharing experiences but much less so for accurate info on the range of subjects they purport to present. 
    That's interesting to know as it's not particularly clear from the website, although I noticed a few looked to be hosted by Focus Birmingham and have speakers and contributors from a few others organisations.
    Senior Community Partner
    Scope
  • janer1967janer1967 Member Posts: 11,138 Disability Gamechanger
    @Adrian_Scope I have chased up today via email so just waiting now 

    I get the delays but I feel there is a safeguarding issue that should be addressed here . I have been referred by a consultant yet they have had no contact to even ask if I am safe in my current situation it's a good job I have my son but again they dont know that 
  • GrinchyGrinchy Member Posts: 342 Pioneering
    Sorry to hear your going through this, i hope you get the right support sorted out, glad you have your son, good luck 
  • woodbinewoodbine Community Co-Production Group Posts: 4,437 Disability Gamechanger
    @janer1967 hi are you ok today?
    "Putting a child into care, isn't caring for a child" (T.Rhattigan)
  • janer1967janer1967 Member Posts: 11,138 Disability Gamechanger
    @woodbine thanks for asking I am trying to get my head round it all and trying to stay positive that while my sight wont get better I can still see a bit 

    The concern is that the pressure in my eye is increasing despite all the interventions and this was the cause of the blindness in my other eye 

    I have to go back on wed again to see if it has improved and so they can decide on next action 

    I have chased up sensory team but still waiting for response 

    I try to be positive but life throws some pretty challenging things at us and the last 4 years I've had it all . 

    But there are lots out there worse off than me 

    Thanks again I really appreciate your support 
  • Dsmout96Dsmout96 Member Posts: 11 Connected
    @janer1967I wish you well however this pans out.
    It must be very daunting, facing the possibility of losing something so fundamental as your sight, and not knowing what the next step will be or if anything will need to be done. Whatever happens I'm sure you will get through it by taking things one step at a time, and knowing you can handle whatever does come up. There's always a way around something no matter how bleak or daunting the situation seems.
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,737 Disability Gamechanger
    Sorry to hear this @janer1967 i remember the day when i had an urgent appointment at Moorfields, i gathered it was going to be bad news but i wasn't expecting my mum to be so upset that she couldn't tell me (i have hearing loss as well) that instead my best friend (who came with us) had to tell me that the damage to my optic nerves was too far gone, and in the consultant's words 'irreversible'.

    It's almost been 4 years since i lost my central vision, and it has been difficult adjusting. Technology, gadgets and aids can help. Always here if you need to talk :)
    Disability Gamechanger - 2019
  • Lou67Lou67 Member Posts: 891 Pioneering
    @janer1967
    Hi I’m so sorry to hear what’s going on with you. 
    I really hope and pray you get the help and support you deserve.
    Take care off yourself and keep been the strong person you are.x 
  • lisathomas50lisathomas50 Posts: 4,324 Disability Gamechanger
    @janer1967 hopefuly you may have your sight longer if there is anything they can do  I am waiting for an operation on my right eye had my left one done in-between lockdowns  last year 

    I hope that they can do something to help your sight last longer 

    Myself I always prepare for the worst  I have empathy for you I was scared that if my left eye didn't go well then I wouldn't be able to see anything at all I cant see out my right eye at all now I can totally understand your fear and my thoughts are with you I am here if you ever need to talk and I genuinely mean that 
  • janer1967janer1967 Member Posts: 11,138 Disability Gamechanger
    Just little update 

    Sensory team been in touch today  they never got my referral.  Should get assessment within 28 days 

    Feeling more positive now after speaking to them and informing me of all the support available 

    Thanks again everyone for your support 
  • Lou67Lou67 Member Posts: 891 Pioneering
    @janer1967
    Glad to hear that, your a strong woman the way you deal with everything that’s thrown your way.

    Take care 😊
  • Sandy_123Sandy_123 Member Posts: 1,538 Pioneering
    @janer1967 that's good that you feel more positive, we are all here for you to support
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