Macular condition

Thank you. Your mother’s story gave me hope

Hi Goldieoldie

Are you writing of macular degeneration (and if so, is it 'wet' or 'dry'?) or a macular hole. They are very different in terms of treatment.

There are some excellent treatments for one type of macular degeneration in particular.

If you refer to a macular hole, this is very different.

I had a macular hole, diagnosed in an eye hospital's A and E and put on waiting list for surgery to close it.

My family thought that I should see a consultant privately which took three weeks to arrange. At this appointment I was retested and my sight had declined sharply. I had surgery shortly after (but required revision surgery some years later and am left with scarring on my macular).

If you have any condition regarding your macular, time is of the essence, so please ensure you know your problem.

The Macular Society can help with further advice.

I hope you have treatment soon.

I have had MD for about five years. Mine in the wet variety. I lost the central vision in one eye because I did no notice the problem until too late. My other eye is also affected but injections have kept my sight although I am now long sighted rather than my former short sightedness. I have stopped driving as I found certain colours were difficult to see but I read, mainly on Kindle because the back lighting helps and I can enlarge the print. I too take Luten tablets every day which is thought to help. Many people do drive with the condition. The injections are not painful, just a bit sore afterwards.
The Macular Society are very helpful, I get their updates which give details of all the latest research which is interesting.

I hope that is helpful GoldieOldie.

Is it macular degenerative disease or macular hole? I had surgery for macular hole in 2021. I can see quite well though straight edges can be slightly wavy. Only last month at regukar optician check the signs were found of a possible beginning of a macular hole in my other eye. Difficulty is that I need a cataract removed and this could disturb the tissues and worsen the situation causing an actual hole. Saw consultants (privately) only this week, NHS waiting time 51 weeks and decision is to remove cataract and uf worse happens I'd have repair, Vitrectomy, quickly. If its degeneration, it's a slow decline. Hope you have good professional advice.

I too have been diagnosed with macular degeneration, unfortunately the dry kind for which there is no treatment. My consultant told me that it takes 9-10 years to become legally blind. I have 5 years to go and my eyesight is deteriorating. My hearing is also poor and getting worse nor do I have any sense of smell. To be honest I hope that I die before I am deaf, blind and can't smell.

Sadly, my husbandman had Macular Degeneration and her sight was very badly affected. We lined every step etc, inside and out, with white paint, so that she could see them, She relied on audio books and music rather than TV, and of course had to give up driving early.

My mother had macular diagnosed via a diabetic screening for eyes. She was advised to get a first injection done as soon as possible and not wait for NHS. She was monitored for next 9 years, excellent service in local hospital and had treatment in both eyes and also cataracts dealt with. When she died at 102 yrs, her eyesight was better than mine, still reading the newspaper and spotting wildlife in garden.

I have MD, it started in my right eye which was diagnosed as dry eye, nothing could be done sadly and so my central vision is lost. I was only in my forties and not my Consultant's youngest patient but one of them apparently. My left eye started with symptoms about 6 years or so ago which is wet eye MD. I have been having injections monthly to 6 weeks and it was very scary at first having a needle directly in the eye but I can honestly say it has been a life saver. I still drive, although not at night, you will be concerned of course but I am so thankful for the great and thoughtful treatment I am having.

I have had dry AMD for around 18 years with sight so far only gradually worsening. Then 10 years ago wet AMD started in one eye. Had injections which happily stopped it progressing & went on to have injections in my other eye when that developed wet AMD. So far so good. Sight is somewhat impaired but I can still read though need stronger lenses in glasses. My first Consultant told me to start taking Macushield Gold & have done so ever since. Hopefully this is helping. If you do not belong to the Macular Society then please get in touch with them as they are very helpful & did put my mind at rest somewhat. Hoping your progress is as good as mine has been so far.

The best advice I can give you for any eye condition is to demand a second opinion unless you feel absolutely confident that the treatment prescribed for you is right.

I have dryMD and my consultant suggested that I take a vitamin supplement containing AREDS. Google it - it’s contains several vitamins and things like lutein. Boots stock several different brands - expensive though and you take 3 a day!

My DH has this condition and at the moment doesn't need any treatment for it. However, he has changed the settings on his mobile, on the pc and the tv menus to a black background. It seems to help a lot. I hope this is of any use to you. It's called Dark Mode.

Good advice above. A few years ago a photographer colleague had MD and he was told about a research project at the Royal Free Hospital which greatly helped him. Probably the Mac Society would know about such projects. (I have it slightly but don't need treatment thankfully).

It's really frightening, isn't it. My mother had it and I'm certain I'm high risk. Contact the Macular Society for support. I subscribe to their newsletter which gives updates on research etc.
www.macularsociety.org/

My MIL had this so I wish the OP luck. It seems that there has been progress with treatment but too late for her. I have heard that smoking increases the risk of getting it and she used yo be a chain smoker.
I have a macular pseudohole or dimple but it doesn't affect my vision much.

My optician strongly recommended that I take a lutein supplement for dry macular degeneration, which I do. I have no idea how much it helps, but so far my condition has not deteriorated.

My old schoolfriend has had to give up driving as her macular degeneration is now so bad.

She had pioneering surgery about 10 years ago which only helped for a short time.

Fifteen months ago I was diagnosed with dry macular degeneration. So far, no treatment needed and at the most recent eye test, no deterioration. I also have double cataracts and I am currently waiting for an appointment at the eye hospital for suspected glaucoma.

I have dry Macular in both eyes. The end stage is called Geogrpahic Atrophy which I have in both eyes. I have been taking part in a trial in my worst eye, my left as part of a world wide trial for 3 years. The drug is called Styfovre and has worked, stopping the progress in my LL) eye but unfortunately does not improve vision. We will know later this year if it has been accepted for use but cost is the problem. It is up and running in America.
PM me if you feel the need.

Dad had macular degeneration, we knew his driving was bad, when he needed to renew his driving licence at 70 he asked us to help filling the form in. Hang on dad how bad is your eyesight, ——- he didn’t drive again

My eldest brother had symptoms in early 60s successfully treated and has had no further problems, I can’t remember exactly the treatment but it has a high rate of success.

Depends what diagnosis you have got
you can have macular degeneration wet or dry One you can have injections for ( wet I think) my dad had them for a few years and it made all the difference for him he kept the sight in one eye ( lost the other before the injections came onboard ) he didn’t have anything but positives and had no qualms having the monthly injection
I have a macular hole which they are waiting to see if it’s gets worse hopefully it ll stay as it is
So it all depends what your diagnosis is