Myopia related macular haemorrhages - Macular Society

Macular Society
3,494 members1,814 posts

Myopia related macular haemorrhages

maz391
maz391

Hi everyone.

I'm new on here, 25 years old, ~-10 in both eyes and have been having macular haemorrhages on and off for the last two years.

The first time it happened in my right eye, we first took a "wait and see" approach as CNV was unconfirmed, then after it got worse I was given an injection. Since then, two more haemorrhages in the right eye and four haemorrhages in the left have all been treated promptly with injections. All left scarring but no noticeable visual disturbance.

However, after my latest haemorrhage in my left eye, the doctor says it's probably just simple bleeding and he wouldn't recommend injection. FFA was negative and the fluid is going away. Unfortunately it's directly over the fovea, so prognosis for recovery of visual acuity is bad (this is obviously concerning, but I'd rather see what happens before processing this).

What I can't understand is after the initial hesitation, for eighteen months the default position had been to inject, but now I'm being told there's never been any evidence of CNV, although it's really hard to be sure about anything, and the best bet is just to leave it to sort itself out. But then does that mean all those nasty injections were just precautionary, but basically pointless? I just don't understand what's changed. All I've done is followed the advice of whichever doctor (there have been several) I've seen at the time.

It is hard enough having these haemorrhages, with no way to prevent or treat them, but all the conflicting information, a lot of which seems to be guesswork, has left me confused and disempowered as well.

Can anyone else share their experiences of macular haemorrhages or simple bleeding associated with myopia, including any precautionary treatment they may have had, or not had?

Thanks

Maz

17 Replies
oldestnewest

Hello maz391

I too have myopic macular disease

In my case it started at age 34 with the development of a Foster Fuchs spot in my right eye, this is a patch on the retina which is generally considered to follow from CNV. That was in 1989 so there was no possible treatment except laser fixation which we decided against as the FF spot was stable - a good decision as it has remained stable for 30 years. I don’t have any central vision in that eye but got used to that quite easily.

About 15 years ago I started to develop troublesome floaters in my left eye and then about 8 years ago started to have massive bleeds related to CNV. These were treated with Lucentis and I now have Avastin as maintenance.

I am certainly not aware of any issues with the myopic eye that lead to bleeding without CNV but I’m not an ophthalmologist., certainly not in younger people. Have you been given any indication as to what the problem might be if not CNV? And have you had an OCT scab, as my understanding is that is the best way of assessing CNV. I’ve had a few over the years and they do show up problems.

I would definitely suggest talking to the Macular Society help line

Best wishes

Sue

maz391
maz391 in reply to StokeySue

Thanks Sue. I actually do have a FF spot, but it never caused any disturbance and appeared before my recent troubles. OCT scans definitely show the haemorrhage, but don't pick up a CNV, in which case it could be just a spontaneous rupture, which should be self-limiting, which in theory is a good thing. The problem seems to be that it is impossible to 100% rule out CNV, and the decision on whether to do a precautionary injection is a matter of opinion on the balance of risks. Previously injections were given. This time I was recommended against. But as far as I understand, the presentation has been the same every time! Hence my confusion.

StokeySue
StokeySue in reply to maz391

Yes I see why you are confused.

I don’t know enough to offer any answers, I think all you can do is to keep asking questions, and crossing fingers

Interesting how much MMD there is around on this forum, in conversation it often feels as if all the emphasis is on AMD and we are a bit of an afterthought, there’s certainly much more research into AMD. However the Macular Society do have a working age group, many of whom are quite youthful MMD or Stargardt’s sufferers and you might do well to contact them.

Interesting that you mention family and lack of forewarning, I’m about as myopic as my Dad, -10d at last Rx, -12d at worst (slight change due to age). Only about 7.5 when the Fuchs spot developed. At that time some only defined high myopia as 8 or worse. Anyway, Dad had neither MD nor glaucoma, but I have full pathological myopia, so I think they don’t issue warning because there’s no second marker to identify those at highest risk, and most myopes aren’t actually at that much risk.

We deserve to win the lottery don’t we?

Hi Maz391,

I have myopic macular degeneration too, with occasional CNV over the last seven years. My experience has been that myopic CNV doesn’t always show up on OCT scans and that we are often reliant on doctors being prepared to do a further flueroscine angiogram to see if there has been new bleeding needing an injection. Even if I rarely see much improvement from them, I feel as though they are worth having to try to keep my sight stable. I don’t understand what your doctor means by “simple bleeding “ that isn’t CNV, maybe it’s worth asking for clarification at your next appointment. Good luck.

maz391
maz391 in reply to Ceri2

Thanks Ceri2. As far as I can understand, spontaneous bleeds can just happen because the retina is so thin, but in this case it's self-limiting, and my FFA was clear. So in theory it's a (relatively) good thing, it's just a little unnerving that there is so much uncertainty. It does continue to get better though so it's possible that the decisions to inject previously were way over cautious.

Ceri2
Ceri2 in reply to maz391

Hi Maz391,

I’m glad that it’s getting better and agree, the uncertainty can be unnerving at times. I think that any of us with myopic degeneration have to be ready to fight our corner when we have new bleeds, largely because a thinner retina can be damaged very easily. I agree with StokeySue that as a condition, myopic degeneration is overlooked in the research, ie we are just lucky that the anti VEGF injections designed for AMD can now be used. There isn’t the same body of research for doctors to rely on about what is effective for myopic bleeds and this makes it even more important to ask questions. Good luck, hope it dries up completely and if it doesn’t, don’t be afraid to request an injection.

Colleen1974
Colleen1974 in reply to Ceri2

Yes, Ceri2 I was going to second that. My bleeding did NOT show up on the OCT but my vision was so distorted and came on so suddenly I was referred for an aniogram. I was never so happy to hear the diagnosis of bleeding in my life. That was just a few days ago. Kaiser will not start shots until they see bleeding but was able to get a shot that day and my eye is 75% improved. The eye is a bit sore today which concerns me but I'm certain I am just hyper vigilant at this point. I have passed the word on to all my myopic friends about this disease that can strike suddenly and sent them the Amsler Grid to check once a week.

Ceri2
Ceri2 in reply to Colleen1974

Hi Colleen, I am glad that it showed up on the fleuroscine angiogram. I feel the same when it shows up! I had the same in November and January, so injections. It was actually March before it showed on the OCT. So relieved that I’d been having injections for four months by then as my first eye went quite quickly.

maz391
maz391 in reply to Colleen1974

That's strange that it didn't appear on OCT Colleen, but I'm glad they sorted it and were able to treat it promptly. My bleed was visible on OCT, but apparently it didn't look like CNV, hence why I was not injected. Despite the anxiety at the time, it turns out this was a good decision in my case, and it dried itself up after several weeks.

Hi Maz

Firstly I am so sorry you are having to deal with all this at such a young age. Must be a great concern for you.

I am myopic also. I was diagnosed with CNV in one eye exactly a year ago and have had 6 injections. The last one was September. I have been having monthly scans and I am lead to believe that as soon as a further leak is detected I will have more injections. It doesn't seem an option to leave them to see what happens.

You definately need to ask your doctor what other conditions apart from CNV could cause bleeding or perhaps the Macular Society could advise you.

I wish you all the luck in the world getting the answers and help you need.

Best Wishes to you Maz. 2468G

maz391
maz391 in reply to 2468G

Thanks 2468G. To be honest, I had no idea that I was at risk of such a thing (plenty of high myopes in my family have had no problems).

I definitely need to get better at asking questions, although frequently it's difficult to get a certain reply. From replies here though, it does sound like people have had a solid diagnosis of CNV, whereas in my case it's a case of we can't 100% rule out CNV or that CNV might develop.

However, it does seem to be getting better, and the consultant has agreed to keep a close guard, so I feel like he's not just dismissing it. Thanks again!

Hi Maz. I wasn't aware until my forties when I experienced a posterior vitreous detachment that having myopia was more than just an inconvenience. Apparently we are at risk of several different disorders. Unlike you, non of my family have myopia. They are all blessed with good eyes. 2468G

Just as an update to this if it's useful/interesting to anyone. I have had a fair bit of improvement in visual acuity and most of the fluid has been reabsorbed at this point, so it seems like not injecting was the right decision in this case. Meanwhile a new haemorrhage has appeared in right eye, but thankfully very peripheral this time, and again consultant does not think it's CNV. It's definitely frustrating to have this keep happening with no way to control it, but it's helpful to hear some other people's stories on here. I'm just grateful that I haven't had any serious vision loss at this point. Wish you all the best with your myopic eyes! Maz

I'm sorry that this has happened to you at such a young age. I had bleeding at age 43 after I took a ton of motrin after gum surgery but the doctors insisted it was not related. I had numerous PDT treatments which stopped the bleeding but left scarring. I then had many years of stability. About 6 years ago I had a small hemorage and my first injection and have been followed by a retina surgeon about every 6-10 weeks and she generally will inject. I would recommend that you get a second opinion and go to the best doctor you can find. Bleeding will cause lose of vision.

***Update four months later***

In case anyone else has a similar experience:

It turns out this consultant was right, and my January haemorrhage dried up by itself after several weeks. Unfortunately, with it being so central, I have a very tiny blind spot because of scarring, but it minimally affects my reading. I count myself lucky. Despite the initial anxiety, it was great to get the same results without injections, and for that I am very grateful. I have since had another five(!) small peripheral haemorrhages (all different places), which have all resolved themselves.

If anyone else does have this experience, I will just say that I *did* notice improvement even in the first 24 hours, and days following, which was reflected in OCT scans that showed less fluid after a week. So if you do go for the "wait and see" regimen, absolutely go back if there are no signs of improvement.

I think a lot of Wet AMD is really Myopic CNV in the over 60's, I understand, please correct me if I am wrong, that if you are 59 it is Myopic CNV but on your 60th birthday it is AMD. It is most confusing. At my first consultation at the Eye Hospital the doctor said the problem was due to my myopia but because of my age, they called it AMD. This is so confusing and I can well understand younger sufferers feeling completely alone and feeling they have nothing in common with the older ones when in fact they are suffering from the same thing. If anyone can enlighten me more on this subject I would be most grateful.

maz391
maz391 in reply to DevonianA

Hi DevonianA. I believe the underlying mechanism behind the two issues is slightly different, but it's difficult to distinguish between the two, and if CNV is present then the treatment approach is much the same. However I think also the prognosis, at least in the short term, is a bit better for a younger patient and they tend to need fewer injections. Hope that helps a bit. Best wishes, Maz.

You may also like...