Hello!
I have had glaucoma for 4 years. I am currently taking 3 different kinds of eye drop and finally got my eye pressure down to 15. HOWEVER at yesterday's appointment my Dr. observed a disc hemorrhage. which is a sign of glaucoma progression. I am deeply worried. I will be having a trabeculectomy in one eye, then after the other eye. Has anyone else had a disc hemorrhage and if so what happened? Thank you. I am new and finding the site very helpful!
Hi Stephanie1977! I was diagnosed with POAG in both eyes with vision loss in one eye in 2018 so about same time as you. I have had disc bleeds picked up regularly until we went into less regular virtual clinics in lockdown, when I didn’t get any feedback on whether they were finding disc bleeds until last June. I am on two drops three times a day. I can’t take beta blockers due to other health issues. After the disc bleed in June last year I had SLT. My doctors can’t decide between them whether this has controlled the pressures. I suspect my consultant is waiting to see if I have another disc bleed before he’ll go for a trab. Meanwhile I’m having SLT on my better eye. For a surgeon my consultant is remarkably reluctant to do a trab. I’m not sure how I feel about that.🤔
Can I ask are you in the Uk?
Are you being treated by the NHS?
What type of glaucoma do you have?
Do you have vision loss already?
How old are you?
There are lots of people on here who have had a trab or two and they will talk you through anything and everything you might want to know.👍🏻 Keep in touch! Let us know how you get on.
Dear Beecalmed,
Thank you for your reply! I feel a lot better this morning simply knowing that others have had these disc bleeds. I am an american, age 62 living in Spain and Germany and decided to join you all since I don't get back to the states much! I have POAG in the right eye with a bit of vision loss and the left eye is Glaucoma Suspect but now the disc bleed. I dont understand if my pressure is 15 why am I having a disc bleed?
What bothers me is that it seems that I am always "waiting and seeing" from the get go with glaucoma, Starting with glaucoma suspect let's wait and see, then whamo next visit glaucoma, then pressure down good, oops back up, stable, then suddenly progression, 24 hr. tension testing,add drops, not low enough, progression, 48 hr tension testing and now the pressure in both eye were 15 and I thought I was good to go and then the disc bleed in my good eye. Its so disappointing and I feel like I am never ever going to be stable. So now the operations to get the pressure very low! What were your eye pressures before and after the SLT? Maybe I am getting too hung up on pressure wondering and I shouldn't? Again thanks for talking to me!
Yes the “stop start” nature of glaucoma is draining. Just when you get used to not a lot happening then out of the blue you get progression and you’re back to worrying.
On my IOPs, when the nurses took my pressure in my right eye before SLT it was 15 then 4 weeks after it was 12. I got quite excited at such low IOPs but my consultant burst my bubble and said the nurses use less sensitive equipment to take pressures and to only pay attention to his readings, which were 18 prior and 16 after.
The left eye that didn’t have SLT is still reading 18 so now they want to try bringing the pressure in that eye down with SLT too.
My consultant does say disc bleeds can indicate progression but he seems to think nothing is certain in glaucoma and so I think you must be able to have disc bleeds and not have fast progression too. Just maybe that’s more rare.
Hello Stephanie1977,
Yes, I was also worried about disc bleeds. I was diagnosed in 2015 and at most visits to optitians and opthalmologists they found disc bleeds in either one eye or the other.
Sometimes they said that they were difficult to spot, they would often only last weeks or months before resolving.
Mostly my pressures were mid to high teens.
Eventually the consultant operated on both eyes and I have 2 Preserflow microshunts.
The last one was implanted a year ago. Apart from dry eyes in the colder months ,both eyes seem to have settled down with low teen pressures and hopefully no more bleeds.
I do have some sight loss in one eye, but the other eye compensates and my vision allows me to drive and do most things as pre Glaucoma.
Do ask the medics as many questions as you can ,and always report any changes that you notice . I found it was worth covering each eye in turn to check any vision change or loss.
The consultant decided to operate when I informed him about the loss in one eye, in fact he was surprised that I had noticed it, he said that most patients do not realise until it is more advanced. Maybe we should all be advised to check each eye separately !
I think the most important thing is that you are aware of the bleeds, you can also ask the medics to check for them at each visit.
Try and make sure you have a reliable optometrist, and you have the hospital consultant's secretary's phone number and do use the Glaucoma UK helpline , they are very helpful.
Best wishes
Hi Holpassive1948!
Thanks for writing as well. Preserflow shuts sound like they are working for you! That's great! Did your Dr tell you the disc bleeds were a sign of glaucoma progression?
Hello stephanie 1977,
Sorry , I have had problems on line and seem to have temporally had Holpassive as a user name. Luckily my husband has unmuddled me !
(Just living up to my name again) .
I do not think any of the clinicians actually said the bleeds were a sign of glaucoma progression, but I had them for such a long time it is difficult to remember.
The clinicians always seemed concerned about the bleeds . At first they said that all sorts of normal things could cause them, but when the bleeds continued I looked it up on a reliable website which indicated that it may mean progression.
We also get excellent Glaucoma UK webinars, and I have heard similar ideas.
It is sometimes even possible to ask questions from Glaucoma specialists usually at the end of the talk.
The Glaucoma consultants always seem very cautious before any suggestion of surgery. It maybe because this disease tends to progress fairly slowly, and changes in treatment take some time to show.
Everyone does tend to react differently, so I suppose it must be tricky to always decide the best treatment.
At least you have Trab surgery planned, so you have some idea of the way forward.
Best wishes
Thanks Muddleme,
I feel disappointed in this hemmorage, but fortunate that I am scheduled to have the trabulectomy in the " bad" eye in June. I always leave the ophmatologist upset and then think of a ton of questions I should have asked,then I worry and research until the next visit when I have a new set of questions!
That's why I find it helpful to come here and will participate in the Glaucoma UK webinars . I have watched 2 older ones on you tube.
I will try to concentrate on the Trab surgeries for now. Thanks again for responding.
😃Have a nice afternoon!
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