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Macular hole

(25 Posts)
lostmyspecs Wed 25-Sept-24 22:43:16

I have recently been diagnosed with a hole in my right macula after a few months of distorted vision in my right eye. I have an outpatient appointment at the end of October to discuss the possibility of a repair procedure which involves inserting a gas bubble into my right eye and then a positioning procedure for about a week or so after the op to ensure that the gas bubble is continuously pressing against the hole to encourage its closure. I have mobility issues due to severe spinal canal stenosis which may make this particular type of positioning particularly difficult. Has anyone experienced this procedure and subsequent positioning. If so, how difficult is it and what was the outcome?

Sillymoo Thu 26-Sept-24 05:37:47

Yes I have had it but was younger and mobile. I believe there is a special chair you can hire.

In my case I prepared as much in advance as I could because my partner worked away. I bought ready meals and downloaded audio books. I also bought a device to help put my own eye drops in.

From what I remember you get 5 to 10 minutes every hour upright so in this time you need to go to the loo, drink, eat etc. At night you sleep on a specific side depending on which eye you've had done.

The operation was a success.

Feel free to ask any questions.

nanna8 Thu 26-Sept-24 06:56:03

I had a large one about 10 years ago and I had the repair op. I got most of my sight back but the op causes cataracts to form so I had to have that removed a couple of weeks later. All went well and although I have a slight distortion in that eye it still, after all these years, continues to improve and I can see to drive and read. I had to lie face down for two weeks but only managed 10 days which is probably why I didn’t get a complete cure.

lostmyspecs Thu 26-Sept-24 16:38:42

Thank you so much for your responses *Sillymoo” and nanna8, both very helpful. It would appear that the positioning exercise after this op is crucial to recovery so I will be discussing this with the Consultant Ophthalmologist on 29 October before deciding to go ahead with the procedure. I will definitely get back to you both at a later date with my decision and then hopefully the outcome.

BlueBelle Thu 26-Sept-24 16:42:53

I have a hole in my macular but obviously it’s not as big as yours I didn’t like the sound of the two weeks afterwards at all as I m quite active They ve told me to wait and see and I am waiting and seeing it doesn’t seem to have got any worse and my brain seems to have adjusted to it all
Fingers crossed
Good luck in your op lostmyspecs

lostmyspecs Thu 26-Sept-24 18:05:47

Thank you for your response Bluebelle. I am not really aware of the size of the hole and am hoping it is small as it was diagnosed recently and not evident on my first scan but had developed by the time of my second scan eight weeks later. The consultant who diagnosed it advised me that a “wait and see” approach would certainly be an option as long as I was aware there would most likely not be such a good outcome should the hole enlarge before the procedure. He has now referred me on to a consultant in a hospital nearer to my home, which is not unusual apparently as the two hospitals share the ophthalmology workload. I have to admit that my first reaction was also to wait and see. I am as active as I can be as the spinal situation is inoperable. Last year I bought a mobility scooter which is great for getting out and about locally, have discovered talking books and large print books as I read a lot, and can cope with household matters within reason so as I am now 79 I really feel I have to be sure I will be able to comply with the postoperative situation. I expect there to be a waiting list if I am finally diagnosed as suitable for surgery but wanted to get some idea of other experiences of this condition and have not been disappointed. Thank you again.

BlueBelle Fri 27-Sept-24 05:45:05

I did see ‘my macular hole’ on the computer and it didn’t look that small 🤣to my untrained eye, but as I say, at first when reading Road signs and things they didn’t look on a level but my brain has adjusted to it all and they look normal now
I m the same age as you lostmyspecs I just don’t think about it now

lostmyspecs Fri 27-Sept-24 12:00:27

It has been very helpful to have three different experiences of this condition. I will post again with the result of my outpatient appointment on 29 October.

nanna8 Fri 27-Sept-24 12:17:35

They treated it as very urgent when I had one. Admittedly it was a large one but they said I could lose sight in that eye if I didn’t get it fixed soon. I had to wait a few days for the specialist, that’s all. I had to travel to the city because the local hospital couldn’t handle it. I had a ‘waking’ anaesthetic because they needed to tell . It wasn’t pleasant I must admit but the cataract op afterwards was a doddle, very simple and quick. They put an artificial lens in.

nanna8 Fri 27-Sept-24 12:18:20

To tell = to tell me things and ask questions.

Devorgilla Sat 28-Sept-24 20:53:39

I had a macular hole repair. I was told it was an urgent operation and you could lose some of your sight in that eye if not repaired asap. I was also told there was a possibility of the other eye developing a hole as the eyes tend to mirror one another. I had a holiday abroad booked when I saw the consultant but was allowed to go. He booked me in as soon as I came back. He really emphasised how important it was to have it done asap for best outcome. The operation took about an hour, if that, and was done under a local anaesthetic and was painless. It was quite fascinating to watch it on the screen. I experieneced no pain afterwards.
My consultant was adamant that I observe 'face down' for 5 days. Less hard to do than you imagine and well worth it. I followed his advice to the letter and had no problems since. I had a nephew in law who had the same operation, didn't follow instructions and ended up with 75% vision. Five days is nothing compared to the rest of your life with sight.
I rented structures to help me cope with 'face down' - four in all. The ones I found most helpful were the table to lie on and the chair. The sleep one was no good for me. I ended up using the seat pads of the sofa on each side of me at night plus pillows to prevent me rolling over onto my back. I constructed a 'face down' structure from, I think, heavy tomes covered with pillows to enable me to breath. Well worth trying in advance to get something that suits you. I think I would have used crates if I had had time to figure that out. The whole idea of face down is to keep pressure off the back of your eye. You can shower, as per medical advice, as long as you look down. You can also visit the loo, eat etc at a table as long as you look down. Sounds a right pain, it is , but worth it. My consultant was delighted with my result and my optician told me it was the best result he had seen in his entire career and he is no spring chicken. I haven't had any problems since.
Do not delay having it done. I didn't develop one in the other eye. As another poster has said it does accelerate cataracts and I was made aware of that. True to his word I developed them two years later. It was dealt with and no problem since.
Small tip - when wiping your eye, boil some water, put in a container, let it cool, and use only that water to wipe eye with a cotton pad for next two weeks. Change daily. Advice from Moorfileds hospital. You can see it on their website. Also works for cataract operation.
BTW you can use computer, watch TV, read using the bed or chair and a mirror for TV. What's not to like about five days rest, doing your own thing, and no-one can say a word.
Good luck, OP.

Shinamae Sat 28-Sept-24 20:59:31

I am already blind in my left eye due to having an ulcer in it a few years ago.
Two years ago, I had cataract surgery on my right eye and that has been fine. I can manage with just one eye, but the thought of any macular degeneration fills me with dread…

V3ra Sat 28-Sept-24 21:33:53

Shinamae we use the opticians at Boots.
They offer a 3D scan as an extra during the normal eyesight test, I think it was £25.
This gives a good view of the macular and is worth having in my opinion.

I also take a lutein and zeaxanthin supplement which I buy from Healthspan. Boots sell similar supplements.

My eyesight is not good and, even with glasses, if I lost my left eye I would be in real trouble so I do whatever I can.
I always protect my eyes from the sun as well, with sunglasses and a hat.
I've been told by the opticians that although I may have poor vision, I do have healthy eyes!

Luckygirl3 Sun 29-Sept-24 08:38:07

I went to the optician yesterday and they sent me to eye Casualty as they thought I had a retinal tear. I have had one before many many
years ago.
The consultant says it is a hole rather than a tear and has put me on the list to have this repaired during a clinic in a few weeks time, presumably by laser, which is how the tear was repaired. No word of having to lie face down.
I am not sure whether I fully.understand the difference between a retinal hole and a macular hole.
I have already had cataracts dealt with in both eyes.

Shinamae Sun 29-Sept-24 12:09:16

V3ra.
Thank you for that. I think that’s what Specsavers do as well, but for some reason my eyes are not suitable for that procedure. 🤷‍♀️

BlueBelle Sun 29-Sept-24 12:37:33

I’ve had torn retinas quite a few times in both eyes and had successful laser treatment for them, I ve had two cateracts done one which was awful as the anesthetic didn’t work and I had the whole op in great pain, the second one was an absolute doddle and two years ago they found I had a macular hole I could see a black round area on the computer however I was told to ‘wait and see’ and two years down the line I m still waiting and still seeing and I have my fingers firmly crossed as I don’t fancy two weeks of tummy lying although of course you can do anything if you put your mind to it
After the cateract op I went from -12 in both eyes to -2 so just need ordinary reading glasses from the pound shop
Long before all the modern procedures my Dad lost sight in one eye and my gran, his mum, also lost sight in one of her eye

Shinamae Sun 29-Sept-24 12:45:37

Twice now I’ve responded to this thread, but nothing is happening

Shinamae Sun 29-Sept-24 12:46:12

Shinamae

Twice now I’ve responded to this thread, but nothing is happening

It is now! 😵‍💫

Kent75 Sun 29-Sept-24 13:36:36

Hello,
Please follow up as quickly as possible as the sooner it is treated, the better. Have you contacted the Macular Society for information and support? The helpline number is 0300 3030 111

Devorgilla Sun 29-Sept-24 13:58:18

BlueBelle, it's not two weeks face down, just, in my case, five days. Some centres only ask you to do face down for two days. The five days worked extremely well for me. Not sure about the two day stint but perhaps there are people on here who were advised to do less.
The two weeks I mentioned was for wiping the eyes during that time with cooled, boiled water as this is considered sterile and less likely to cause infections in the operation raw wound if you use ordinary tap water.
Not sure what the difference is between a hole in the retina and one in the macula even with looking it up on net. Perhaps they control different areas of vision.

TwiceAsNice Sun 29-Sept-24 15:19:27

I had this operation a few years ago. At first they thought it was a bad cataract but then it was discovered it was a macular hole. I did have a cataract as well and that was sorted first and then the hole.

The surgeon I saw was marvellous and he didn’t do the positioning afterwards , he didn’t see it as necessary and the op was still a success although my night vision is not good.

I have spinal stenosis and explained I was worried I wouldn’t be able to stay still on my back for long enough ( estimate was 60-90 mins) . The surgeon said there was only one 5 mins where I had to be completely still and if I spoke to him he would stop and let me change position , he did and was very supportive ( unlike his registrar who was horrible) . I also had surgical paper over my face the whole time but the surgeon and nurse talked to me all the time.

Afterwards I had eye drops every day for a month. My eye was painful for several days and I needed painkillers and I had dizzyness when I bent down and poor spatial awareness until my peripheral vision started to come back. It took 3 months for my sight to recover and I couldn’t drive for that time. I hope it goes well for you please ask lots of questions and try and find a surgeon that doesn’t do the positioning . Feel free to pm me

Shinamae Tue 08-Oct-24 22:28:46

Thanks to this thread I went to Specsavers,I haven’t been for about two years anyway the girl who did my exam said she wants me to have some special scans done and not to worry but of course I’m going to worry.
It’s not the scan you pay either five or £10 for because my eyes aren’t suitable for that but it’s specialist scan and I’m going on the 1st of November
As I said before, I only have my right eye because my left eye is blind, the optician did say something about water in the eye. I don’t know what she meant and she didn’t elaborate.
Last time my eyes were checked was when I had my cataract done about two years ago Specsavers haven’t called me in since then…

Nacky Sat 12-Oct-24 22:17:39

I had a macular hole diagnosed at least 10 years ago and decided on the 'wait and see' approach having had the possible options carefully outlined - I remember being told about lying upside down and breaks once an hour. So far,so good. I have a scan once a year which used to be at hospital but is now with my optician. At the time I was diagnosed I contacted the Macular Society and they were really helpful.

Rosajoy Sat 03-Jan-26 09:17:49

I had vitrectomy for macular hole a month ago tomorrow. The surgeon inserted an 8 week gas bubble so I still have fuzzy and slightly distorted vision in half the eye, the rest is still covered by the moving bubble! He told me to do my best with face down but appeared quite ambivalent about sticking strictly to the rules. I think its up for debate these days. Unfortunately the hole had become large (long story of failure to diagnose by a popular chain of High Street opticians). I chose to go private as the waiting list just for first consultation is 22 weeks on the NHS in my area! The surgeon did an inverted flap procedure which reportedly gives a better chance of closure for large holes. My biggest fear now is that the other eye will go the same way.

Rosajoy Sat 03-Jan-26 09:29:48

I'm glad to have read your surgeon didn't insist on face down. Mine didn't either. I think it can depend on how they do the surgery and how much gas fill they insert and this can depend on how good the sight in your other eye is!