Newly diagnosed proliferation retinopathy

[Connorman]

Hi does anyone have any experience of this condition as I have just received a letter telling me my sight is in serious danger and it has really affected my life and shocked me. All I have been told is a may need treatment. My vision does not seem to bad at the moment except for occasional floaters
Thank you very much for any positive feedback

 

[Inka]

Welcome @Connorman and sorry to hear about your stressful eye letter. Have you been able to phone them to get more details? Sometimes letters are very stark and blunt, which can be upsetting, but talking to a human being can help a little.

I believe @Flower has proliferative retinopathy.

 

[Connorman]

Thank you Inka, yes did try to ring them but was only speaking to medical secretary and could not get many answers she said will have to wait to speak to my specialist when I come in don’t yet know when that will be

 

[everydayupsanddowns]

Sorry to hear about your retinopathy @Connorman , and about the tone of the letter you received

We have several members who have had various rounds of laser treatment with positive outcomes, and who have been able to slow progression of any changes in their eyes by improving and steadying their glucose management.

You aren’t the first person to have been frightened by the tone and terminology in the letter. It’s a shame they can’t word them in a slightly softer and less alarming way, but I suppose they do want people to take action and attend follow-up appointments, and not put it off or ignore it

Hope your follow-up appointment comes through quickly, and puts your mind at rest, with a clearer understanding of the way forward for you, and what happens next.

 

[Inka]

Thank you Inka, yes did try to ring them but was only speaking to medical secretary and could not get many answers she said will have to wait to speak to my specialist when I come in don’t yet know when that will be

You could try a forum search. Use the Search feature top right and put in various keywords such as proliferative and retinopathy and variants. You’ll then get a list of threads that you can read through.

There’s also some basic information here with links you can click:

Managing eye problems when you have diabetes

You can prevent your eye disease getting worse – but you need to act now. Diabetic eye screening is so important because you may not realise you have a problem with your eyes, and if a problem with your eyes is picked up early, taking the right steps can stop it getting worse.

www.diabetes.org.uk

I hope you can get a good treatment plan and successful results. Sending my best wishes @Connorman

 

[Maz2]

As an ex NHS worker I know how abrupt some of the letters are. Our patients used to get very upset the way the DNA (did not arrive) letters were worded as a lot of the time the poor person had not even received a letter so did not know they should turn up for an appt. They were sent to the GP as well which made it look to their GP as though they were wasting everyone's time.

It is a good idea to speak to one of the doctors when available or even a GP if they have had a report. I was a medical secretary myself and you are very restricted in what you can say as you are not medically qualified. They always have to wait for doctor response.

Hope you get an answer soon as it must be extremely worrying.

Have you been diabetic a long time and is the hba1c really high. I know quite a few people who are diabetic who have not had problems with their eyes. Not yet anyway so I was just curious.

 

[trophywench]

We know very well that secretaries including medical ones, do their best - husband's first wife after the divorce spent some time as sec to a severely dyslexic lady in a senior post with the police. Nearly caused her to have a mental health crisis let alone the lady in question. But - though our hosp have got better at telling you that you have an appt - last week OH rang a medical sec as told to do when they cancelled his planned op about 3pm ish a fortnight before, after he'd been there ready and waiting from 7am (first op scheduled for 2 hrs ish took 5 hrs as the person's arteries were all tangled up strangely hence ran out of theatre time.) This mailbox is full, click. Rang hospital switchboard again. Same result ....... meanwhile life has caught up with us in different ways which have simply had to take priority.