Macular Hole

[doubtfully]

Hi, long term PMR/GCA sufferer been on 4mg for long enough and staying there! However I developed a macular hole which needed surgery. Has anyone else had this problem, is there likely any association of cause with GCA /PMR or Pred? Surgery done now and I have to wait and see how successful it is. Bored with it all and grumpy!

[SheffieldJane]

No wonder you are bored with it all and grumpy, I would be.

This is quite rare and I don’t think you can lay it at the door of our diseases or treatments. At least it has not been confirmed by research that I can find. I do know what you mean though. Long term steroid use can make you prone to Glaucoma and cataracts and it makes you wonder.

Wishing you a complete recovery and no more ordeals. 🌺

[Koalajane]

I have macular oedema but have read a bit about macular holes and it seems quite common as one ages

[Highlandtiger]

My brother has a macular hole but he doesn't have PMR or GCA so there wasn't a connection for him.

[ncfaaeos]

I also have a mucular hole, which has nothing to do with my PMR/GCA. Mine has been stable for years and I do not really notice it (unless I try only to use the eye it affects). I just have it checked on a regular basis.

[whitefishbay]

I have had two macular holes well before PMR (I get everything). I had them over 15 years ago. It is a great shock I know. You have to get your head round it and then you can do it. It may have changed since I had mine (in London - surgery at Moorfields). I waited for six months for the first surgery which they said was fine but in retrospect I would try to go privately. They take the gunge out of your eye and put a gas buble over the hole which slowly heals the eye. The tricky bit is I had to then be face down for 14 days. Sleep face down (on two travel neck pillows) and when you walk have your eyes face down. I had a general anasthetic the first time so I would fall asleep alot when I got home (face down). My husband built tables with holes for the bed so I could watch tv (under the table). A year later I had the next one. I got the macular hole, called the surgeon on Tuesday and had the surgery on Saturday. This time I only had to be face down for ten days.

I hope things have moved along now. Sounds horrific but you have to get your head round the idea and the you can do it. No idea why you get them.....when I had it done they had only been fixing macular holes for ten years so we are lucky.

Let me know if you have any questions (and I hope I haven't put you off).

Whitefish

[doubtfully in reply to whitefishbay]

Hi, I am lucky only 5 days between diagnosis and surgery. Thank goodness for private health insurance. I opted for a general anaesthetic because I hate anyone anywhere near my eyes, I hate opticians appointments ! anyway hopefully on the road to recovery, I see my consultant next week for a follow up..... all be it through one eye only. I was advised that positioning was not required but to avoid lying on my back. the annoying bit is that I live rurally, not allowed to drive and a husband who works away. I had an equestrian accident last year and broke multiple vertebrae so walking into the village is a non starter. Ive told myself to treat it like lock down which I enjoyed but its pre Christmas fun which I am really missing. I know its a trivial complaint given my sighyt was at risk and I really should focus on how lucky I am.

[Cadden]

I had a full thickness macular hole repaired very successfully a few years ago. No connection to PMR