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Sightloss and hopeless

Helen40

Helen40

Well-Known Member
Messages
140
Location
North lincolnshire
Type of diabetes
Type 1
Treatment type
Insulin
Hi all, been a few years since e I last posted my story about pdr, I'm pretty much lost all sight in my left eye and right eye has worsened due to vitreous hemorrhages. I've just had 6 vr in both eyes within 5 weeks. No working during that time, I'm a social worker fir famies so now I can't do my job.
Was told last week I needed intensive prp as the new vessels are reaching my iris, thete was a good clear view though so they hoped to burn a lot of them out. Fast forward to yesterday, I had a junior doctor who knew nothing of my history, she said the view was so unclear she would be guessing at where to direct the laser, never had such a painful experience ce, she kept saying sorry that she was hitting a nerve in my eye?? Another doctor walked in mid laser a d told her to finish up as he had an emergency patient, 2 minutes after she said there was nothing more she could do laser wise. I'd been in the chair 10 minutes for a bilateral prp and felt like my skull was going to burst from the pain.

She said I would need victrectomy, last week I was told I was nowhere near that stage, I asked what options were there to save my sight (I've been told my underlying vision is good) she said "I don't know if it can"

I'm totally devastated and traumatised, I left shaking and sobbing, in 4 years I've never been told this. I can't help feeling what is the point of me now?
 
Helen40 said:
Hi all, been a few years since e I last posted my story about pdr, I'm pretty much lost all sight in my left eye and right eye has worsened due to vitreous hemorrhages. I've just had 6 vr in both eyes within 5 weeks. No working during that time, I'm a social worker fir famies so now I can't do my job.
Was told last week I needed intensive prp as the new vessels are reaching my iris, thete was a good clear view though so they hoped to burn a lot of them out. Fast forward to yesterday, I had a junior doctor who knew nothing of my history, she said the view was so unclear she would be guessing at where to direct the laser, never had such a painful experience ce, she kept saying sorry that she was hitting a nerve in my eye?? Another doctor walked in mid laser a d told her to finish up as he had an emergency patient, 2 minutes after she said there was nothing more she could do laser wise. I'd been in the chair 10 minutes for a bilateral prp and felt like my skull was going to burst from the pain.

She said I would need victrectomy, last week I was told I was nowhere near that stage, I asked what options were there to save my sight (I've been told my underlying vision is good) she said "I don't know if it can"

I'm totally devastated and traumatised, I left shaking and sobbing, in 4 years I've never been told this. I can't help feeling what is the point of me now?
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@Helen40: Have you written to your overall hospital consultant? I would insist on an appointment with him/her to have a thorough discussion, especially since it's affecting your mental health with the worry.
 
Helen40 said:
Hi all, been a few years since e I last posted my story about pdr, I'm pretty much lost all sight in my left eye and right eye has worsened due to vitreous hemorrhages. I've just had 6 vr in both eyes within 5 weeks. No working during that time, I'm a social worker fir famies so now I can't do my job.
Was told last week I needed intensive prp as the new vessels are reaching my iris, thete was a good clear view though so they hoped to burn a lot of them out. Fast forward to yesterday, I had a junior doctor who knew nothing of my history, she said the view was so unclear she would be guessing at where to direct the laser, never had such a painful experience ce, she kept saying sorry that she was hitting a nerve in my eye?? Another doctor walked in mid laser a d told her to finish up as he had an emergency patient, 2 minutes after she said there was nothing more she could do laser wise. I'd been in the chair 10 minutes for a bilateral prp and felt like my skull was going to burst from the pain.

She said I would need victrectomy, last week I was told I was nowhere near that stage, I asked what options were there to save my sight (I've been told my underlying vision is good) she said "I don't know if it can"

I'm totally devastated and traumatised, I left shaking and sobbing, in 4 years I've never been told this. I can't help feeling what is the point of me now?
Click to expand...
I am so sorry for what you have been going through. Please stay on the forum. I am sure there are other members that can give you advice.
As far as work is concerned, don't give up. Do you belong to a union. They are good when it comes to what you may or not need to do. I was medically retired when I was 38. So make sure you take all the right steps.
Are you able to get a second opinion for your eyes? Worth going to a specialist centre?
Best of luck and just keep us up to date on your progress.
 
Hello, thankyou for responding. I work for my local council and I'm lucky as they're very inclusive, I hope I don't have to leave as I cannot afford retirement, I have 3 daughters who still rely on me. I'm just so sad and tired right now I've emailed PALS and I'm already in the process of transferring yo a different hospital, I've contacted their eclo. My condition has been badly managed, my drivers licence will be gone after all this laser without doubt. I can't even see my own face clearly, I worry about the impact this has on my family, my partner.....should I just accept a ssi certificate and accept this or do I carry on fight8ng for my sight, because I'm so very tired of it all.
 
As well as seeing a new consultant which will hopefully lead to a better outcome for you, have you thought about looking at the RNIB site - you don't need to be blind to use their services, I have a congenital sight issue (ie from birth/early years) and found their site helpful even though I still have one 'good' eye.
They can provide advice about living with any degree of sight loss.
 
Hi there, I am un touch with rnib, I have a meeting with a sight loss ad user in Wed essay funnily enough. Sorry tti sound so defeatist, for 2 years I e joyed some stabily with my eyes then bam, it came back with a vengeance lol
 
I managed to get an appointment today with the new specialist hospital I'm transferring to, wow what a difference a good consultant and nursing staff makes! I have been shown such professional compassion and understanding today, I was given yime to ask questions and my partner was also included. I now have a new treatment plan, turns out my left eye has started to have fluid build up again, dme, alongside the retinopathy- why this wasn't picked up by prior appts at Notts 've no idea but I'm not dwelling on that!

I'm getting an injection to speed up the blood reabsorption so they can perform thorough laser, then a course of eyelea injections for the fluid and swelling and to prevent new growth, I've been asking for this at Nottingham for so long and finally I've found a specialist centre that agrees. Just got to wait for yesterday's laser to heal up in about 6 weeks first hopefully I can stay calm til then!

Lesson is don't take one person's opinion, if you feel bad or unsure about your treatment it's worth getting another opinion - just to make sure you're doing what you can for your health.
 
Helen40 said:
I managed to get an appointment today with the new specialist hospital I'm transferring to, wow what a difference a good consultant and nursing staff makes! I have been shown such professional compassion and understanding today
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What a wonderful update after that horrible experience!
 
Outlier said:
Thank you for that encouraging update and YAY! such good news at last. Do keep us informed.
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Thanks all! It's going to be another long roD after a nice stable 2 years but I'm hopeful I will get back on that path. In 2 weeks injection to xkear blood, in 6 weeks mire laser and then eyelea jabs to sort out the oedema and stop new growths. I know how well the jabs work so I welcome them lol. Just sitting around gor another month praying I don't have another hemmorhage is gonna be so hard!

There was a scary bit yesterday when they brought in a retinal surgeon as the consultant thought he saw holes in my retina, he seemed satisfied though that they were ischaemic bleeds, they can't see enough of the retina to Check thoroughly though which I'm a bit worried about
 
Gutted to have another huge bleed in my left eye yesterday, I'd just cleared enough yo see my own face clearly and now th8s. Everytime it happens I should be used to it but it's like a fresh new devastation all over again. I was supposed to return to work tomorrow, I won't even be able to see what bus I need let alone drive, its just so cruel, I'm doing everything I should be
 
Helen40 said:
Gutted to have another huge bleed in my left eye yesterday, I'd just cleared enough yo see my own face clearly and now th8s. Everytime it happens I should be used to it but it's like a fresh new devastation all over again. I was supposed to return to work tomorrow, I won't even be able to see what bus I need let alone drive, its just so cruel, I'm doing everything I should be
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No advice, I just wanted to send you a great big virtual hug.
 
I'm really sorry, just when you'd got a much more positive way forward. Hopefully this bleed will reabsorb before your next appointment and the planned laser treatment can go ahead. Sending you love and hugs xx
 
I think I got my luck, new hospital and new consultant straightaway said I need a course of eyelea in my left eye due to oedema good news is my right eye needs no treatment and has stabilised, abnormal vessels are shrinking and there's no new ones she can see, my 1st jab is next Tuesday and this will help with I.proving/preserving my poor vision in the left eye. I can even sleep lying down again after 3 long months! Both my retinas are good underneath all the blood and gunk!
 
Helen40 said:
I think I got my luck, new hospital and new consultant straightaway said I need a course of eyelea in my left eye due to oedema good news is my right eye needs no treatment and has stabilised, abnormal vessels are shrinking and there's no new ones she can see, my 1st jab is next Tuesday and this will help with I.proving/preserving my poor vision in the left eye. I can even sleep lying down again after 3 long months! Both my retinas are good underneath all the blood and gunk!
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Bravo to you for your resilience.

Just keep on going, one foot in front of the other.

Every best wish from this corner.
 
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