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Source: (consider it)
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Thread: Macular degeneration
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Francophile
Shipmate
# 17838
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Posted
My mum is 85 and has this condition in her left eye. It was diagnosed about 4 years ago and since then has been a series of injections, about every 3 months into the eye, with 4 weekly scans to check on the progress of the disease. Its wonderful that our NHS has such wonderful eye doctors and nurses who are resourced and able to deliver the latest treatment. I know that a generation ago, or less, the prognosis was progressive blindness in the affected eye. However, as time has gone on, mum is finding the treatment regime more and more onerous. The injections are painful and discomfort lasts about 24 to 36 hours afterwards. I believe that the injections are supposed to halt the progress of the degeneration, although past damage cannot be repaired. Mum keeps hoping that she will be told that her condition is stable and that no more injections are required, but it hasn't happened yet. One doctor told her that some patients receive 30 or more injections.
I dont want to sound ungrateful. Apparently each injection costs around £700 to the NHS. It is, of course, well worth the cost to save sight in the affected eye.
I just wondered if anyone else has recent experience of the treatment regime and can offer any thoughts. Not seeking medical advice, obviously!
Posts: 243 | From: United Kingdom | Registered: Sep 2013
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Sarasa
Shipmate
# 12271
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Posted
My mother is the same age as yours and has been having the injections more or less monthly for about eighteen months. There seems to be some improvement recently, she didn't need an injection a couple of months ago and didn't need one last week either. She gets very depressed when she has to have an injection, not so much because of the discomfort, but because her eye isn't being 'cured'. I think she still secretly hopes that if the bleeding stops her sight will get better, even though she knows that it won't - the doctors have been very up front about it. They have been encouraging her to have a cateract operation in her 'good' eye and she's finally agreed. Having had one myself a couple of years ago I think it will make a big difference, and I hope, allow her to keep independent a little longer.
Don't know if that's much of a help.
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'I guess things didn't go so well tonight, but I'm trying. Lord, I'm trying.' Charlie (Harvey Keitel) in Mean Streets.
Posts: 2035 | From: London | Registered: Jan 2007
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QLib
Bad Example
# 43
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Posted
Can't say anything about the injections, sorry - but I hope you are going regularly to a good optician, who will take photos of your macula (easier to spot changes over time) and give you advice on preventive measures.
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Tradition is the handing down of the flame, not the worship of the ashes Gustav Mahler.
Posts: 8913 | From: Page 28 | Registered: May 2001
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Francophile
Shipmate
# 17838
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Posted
quote:
Originally posted by QLib:
Can't say anything about the injections, sorry - but I hope you are going regularly to a good optician, who will take photos of your macula (easier to spot changes over time) and give you advice on preventive measures.
Yes, it was the optician who noticed the problem during a routine eye examination and referred mum to the opthalmologists. I definitely would advise over 70s to have the recommended annual eye test, every two years for the rest of us. These are the UK recommendations, may be different elsewhere.
Posts: 243 | From: United Kingdom | Registered: Sep 2013
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Francophile
Shipmate
# 17838
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Posted
quote:
Originally posted by Gussie:
My mother is the same age as yours and has been having the injections more or less monthly for about eighteen months. There seems to be some improvement recently, she didn't need an injection a couple of months ago and didn't need one last week either. She gets very depressed when she has to have an injection, not so much because of the discomfort, but because her eye isn't being 'cured'. I think she still secretly hopes that if the bleeding stops her sight will get better, even though she knows that it won't - the doctors have been very up front about it. They have been encouraging her to have a cateract operation in her 'good' eye and she's finally agreed. Having had one myself a couple of years ago I think it will make a big difference, and I hope, allow her to keep independent a little longer.
Don't know if that's much of a help.
Thanks Gussie. I hope things get better for your mother soon. Monthly injections, that's tough. Re cataracts, my father had both eyes done over 20 years ago, it made a massive difference to his eyesight and allowed him to carry on driving for at least another 10 years. He had to give up for other reasons.
Posts: 243 | From: United Kingdom | Registered: Sep 2013
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QLib
Bad Example
# 43
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Posted
I'm still in my late 50s, but my mum and grandmother both had macular degeneration and I've already got drusen which are causing concern. I'm having annual eye examinations, wearing lenses that have some element of light filtering, and taking recommended dietary supplements.
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Tradition is the handing down of the flame, not the worship of the ashes Gustav Mahler.
Posts: 8913 | From: Page 28 | Registered: May 2001
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Sarasa
Shipmate
# 12271
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Posted
When I told my optometirist about my mum he did a baseline assessment of my eyes and told me to wear dark glasses in the sunshine. Like my mum I have light blue eyes, which apparently carries a higher risj of such problems.
I'm really cross for my mum, her optician knew there was a problem but didn't do anything about it until mum inisisted on seeing someone else and they more or less sent her in a taxi to the nearest eye hospital.
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'I guess things didn't go so well tonight, but I'm trying. Lord, I'm trying.' Charlie (Harvey Keitel) in Mean Streets.
Posts: 2035 | From: London | Registered: Jan 2007
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Francophile
Shipmate
# 17838
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Posted
Qlib, re the dietary supplements etc, I have mentioned to my optician that my mother has AMD but she (the optician) didn't talk to me about diet or (as far as I know) do any special measurements. I get the usual retina photograph each time and nothing of concern has ever been mentioned. I'm wondering if perhaps I should raise the topic next time and ask for measurements etc to be done?
Posts: 243 | From: United Kingdom | Registered: Sep 2013
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Adrienne
Shipmate
# 2334
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Posted
My Mum has wet AMD and lost the sight in one eye entirely and quite fast about ten years back. She has an Amsler grid to keep a check on her good eye, and strict instructions to report changes so that if anything happens she can get treatment really quickly. I understand wet AMD can now be halted with really quick treatment, and treatment for dry AMD is improving all the time.
Mum has cataracts in her good eye and will have that operated on soon - she's hesitated because it is her only vision, and is a decision only she can make. I'm encouraged by the difference people are reporting here with having that done.
For myself, I've been told that at my age and with family AMD I should now get an eye check every year, and this thread's jogged my memory to do that!
We've found The Macular Society website a really useful source of information too.
(edited for sense)
[ 26. September 2013, 20:44: Message edited by: Adrienne ]
Posts: 977 | From: UK | Registered: Feb 2002
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Francophile
Shipmate
# 17838
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Posted
Hi Adrienne, I am sorry to hear of your mother's eye problems, things seem to have moved on in the way of treatment since your mother lost her sight in one eye ten years ago. I realise that this is little consolation in terms of her loss but at least the sight in her other eye is being monitored very carefully and the new treatments for AMD are available if that becomes necessary. I can understand her reluctance to undergo cataract removal in her good eye but it is a very safe procedure. My father described it as if he was looking through a misted window before the op which was suddenly wiped clear after the op.
[ 26. September 2013, 20:56: Message edited by: Francophile ]
Posts: 243 | From: United Kingdom | Registered: Sep 2013
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QLib
Bad Example
# 43
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Posted
quote:
Originally posted by Francophile:
Qlib, re the dietary supplements etc, I have mentioned to my optician that my mother has AMD but she (the optician) didn't talk to me about diet or (as far as I know) do any special measurements. I get the usual retina photograph each time and nothing of concern has ever been mentioned. I'm wondering if perhaps I should raise the topic next time and ask for measurements etc to be done?
I think if you're having photos taken, and the optician is aware of the family history, then there's no need to worry. I can PM you the dietary supplement my optician recommended if you like.
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Tradition is the handing down of the flame, not the worship of the ashes Gustav Mahler.
Posts: 8913 | From: Page 28 | Registered: May 2001
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Francophile
Shipmate
# 17838
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Posted
Thanks Qlib, that would be really helpful. I have not hitherto been concerned or worried about my own eye health but you have raised awareness of the need to be extra careful and vigilant where there is AMD in the family. Not a message we hear much, or at least it has passed me by.
Posts: 243 | From: United Kingdom | Registered: Sep 2013
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Polly Plummer
Shipmate
# 13354
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Posted
I think no one said much about it till recently as there was no treatment. My MiL was diagnosed with it several years ago and had to pay privately for the first few injections - about £10,000 for the appointment and the treatment, but she was happy to use up her savings to save her sight. Fortunately after the first few times it was accepted by NICE and she was able to get it on the NHS.
She has said that it gets sore in the place where they do the injection, but fortunately they've decided it's stabilised and she doesn't need any more. She is a game old bird!
Posts: 577 | Registered: Jan 2008
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