johnnyacousticuk
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- Type 1
Hi I'm John from Belfast. Type 1 for 52 years. Just had a bleed in my right eye.
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Pumper_Sue
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Hello John and welcome to the forum, like you I've been type 1 for 52 years as well. Hope your eye is ok now.
johnnyacousticuk
New Member
- Relationship to Diabetes
- Type 1
Thanks all. I've been told there is a several month waiting list for treatment. Very shocked as I have had laser treatment in the past and it was after my routine retinopathy clinic check ups. Now I go to my doctor every year for the photo taken by the eye screening service. I was a lot happier seeing my consultant every year.
Last screening was 2 months ago and they said there were some changes but I haven't had a letter with the results yet.
The hospital eye casualty doctor said it's ok as my left eye is fine and if I go blind in my right I I'll still be able to see.
I have clouds floating about my eye and a black spider looking object constantly in the right of my vision.
I already have a very low quality of life with advanced prostate cancer in my bones heart failure and angina.
Disgusted with the NHS now and might have to go private.
Last screening was 2 months ago and they said there were some changes but I haven't had a letter with the results yet.
The hospital eye casualty doctor said it's ok as my left eye is fine and if I go blind in my right I I'll still be able to see.
I have clouds floating about my eye and a black spider looking object constantly in the right of my vision.
I already have a very low quality of life with advanced prostate cancer in my bones heart failure and angina.
Disgusted with the NHS now and might have to go private.
Pumper_Sue
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That sounds dreadful care John I would put in a formal complaint.
Flower
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Hello and welcome Johnny.
You have got a lot to deal with. I would chase up the letter from the last screening asap.
In relation to treatment for your retinal haemorrhage, the vast majority of the treatment in between laser/injections is waiting. The blood will fade and disperse from your eyeball jelly eventually but it does take time as the blood is trapped inside the eye and does appear like dark smudges and spider shapes in the vision. It will eventually disperse completely but makes life so difficult whilst it is obscuring your vision and distracting you as you have no option but to try and see round it. If you have further bleeds- and I really hope there won't be any - there is an operation called a vitrectomy which removes the jelly from the eye to give the ophthalmologist a clearer view of what is happening on the retina plus as the eye is then filled with clear saline solution if there are any further bleeds they disperse much quicker in liquid than they do in jelly.
Did the eye casualty give you a follow up appointment to see what is happening? From my experience there was a lot of waiting in between treatments to see the results even though I desperately wanted something to improve the situation there and then.
I wish you well for the ongoing treatment and hope for a good outcome 🙂
You have got a lot to deal with. I would chase up the letter from the last screening asap.
In relation to treatment for your retinal haemorrhage, the vast majority of the treatment in between laser/injections is waiting. The blood will fade and disperse from your eyeball jelly eventually but it does take time as the blood is trapped inside the eye and does appear like dark smudges and spider shapes in the vision. It will eventually disperse completely but makes life so difficult whilst it is obscuring your vision and distracting you as you have no option but to try and see round it. If you have further bleeds- and I really hope there won't be any - there is an operation called a vitrectomy which removes the jelly from the eye to give the ophthalmologist a clearer view of what is happening on the retina plus as the eye is then filled with clear saline solution if there are any further bleeds they disperse much quicker in liquid than they do in jelly.
Did the eye casualty give you a follow up appointment to see what is happening? From my experience there was a lot of waiting in between treatments to see the results even though I desperately wanted something to improve the situation there and then.
I wish you well for the ongoing treatment and hope for a good outcome 🙂
trophywench
Well-Known Member
- Relationship to Diabetes
- Type 1
What a thing to tell ANYBODY !
Johnny - seriously - please speak to the Diabetes UK Helpline. Like Sue says - I think it warrants a formal complaint too - and the Helpline will be able to tell you exactly what's available and how to deal with this to move forward in a much more helpful way. https://www.diabetes.org.uk/How_we_help/Helpline/
This same thing has just happened to someone on another UK diabetes forum - he was seen within 2 days - it's now a week since the bleed appeared and it's already started clearing - in any event he has a follow up appointment for 2 weeks after the original one to see if any laser or anything else might be needed.
We complain enough about NHS services in mainland UK - but it strikes me NI are FAR less well served than we are.
Sadly medical treatment for Prostate Cancer and support for patients and their families are both sadly lacking in Northern Ireland generally, although I am led to believe there is some help and counselling on a self-referral basis available at Belfast City Hospital - but I do urge you to speak to Prostate Cancer UK who have advisers and trained specialist nurses on hand for anyone that needs help or re-assurance about the subject. They were working with Stormont a few years ago to attempt to improve the situation there - so you never know what might be in the offing.
Johnny - seriously - please speak to the Diabetes UK Helpline. Like Sue says - I think it warrants a formal complaint too - and the Helpline will be able to tell you exactly what's available and how to deal with this to move forward in a much more helpful way. https://www.diabetes.org.uk/How_we_help/Helpline/
This same thing has just happened to someone on another UK diabetes forum - he was seen within 2 days - it's now a week since the bleed appeared and it's already started clearing - in any event he has a follow up appointment for 2 weeks after the original one to see if any laser or anything else might be needed.
We complain enough about NHS services in mainland UK - but it strikes me NI are FAR less well served than we are.
Sadly medical treatment for Prostate Cancer and support for patients and their families are both sadly lacking in Northern Ireland generally, although I am led to believe there is some help and counselling on a self-referral basis available at Belfast City Hospital - but I do urge you to speak to Prostate Cancer UK who have advisers and trained specialist nurses on hand for anyone that needs help or re-assurance about the subject. They were working with Stormont a few years ago to attempt to improve the situation there - so you never know what might be in the offing.
johnnyacousticuk
New Member
- Relationship to Diabetes
- Type 1
Thank you Jenny. Great advice. I am very happy with my care at the cancer centre. I'm on a clinical trial with a brilliant consultant.
This eye problem is very scary in that another bleed seems likely while I wait. I've tried the cancer card and also have contacted my diabetes consultant in the Ulster hospital. I said I'd like to see who I thought was my eye consultant but was told he has retired. I don't know who my new if any doctor is.
I was never very confident with the screening service and will be attempting to get my report. I have read there is a problem nationwide with diabetic eye care. I had extensive laser in my left eye in 1980 and no bother since. I had precautionary laser in my right eye ten years ago and have never missed an appointment. Now this in my right eye. I also get a photo taken of the back of my eye at the opticians every year.
This eye problem is very scary in that another bleed seems likely while I wait. I've tried the cancer card and also have contacted my diabetes consultant in the Ulster hospital. I said I'd like to see who I thought was my eye consultant but was told he has retired. I don't know who my new if any doctor is.
I was never very confident with the screening service and will be attempting to get my report. I have read there is a problem nationwide with diabetic eye care. I had extensive laser in my left eye in 1980 and no bother since. I had precautionary laser in my right eye ten years ago and have never missed an appointment. Now this in my right eye. I also get a photo taken of the back of my eye at the opticians every year.
johnnyacousticuk
New Member
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- Type 1
Thanks again all
Good news. After phone calls to the screening people who were very helpful I've got an appointment on Wednesday morning with an eye consultant.
My eye has settled well with no new bleeds.
I'll start a new thread now the initial long intro is done.
Good news. After phone calls to the screening people who were very helpful I've got an appointment on Wednesday morning with an eye consultant.
My eye has settled well with no new bleeds.
I'll start a new thread now the initial long intro is done.
Pumper_Sue
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Really pleased to hear you have managed to make some progress and good luck on Wednesday.
Bill Stewardson
Well-Known Member
Hello to Johnny.
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