Bad News: My Eye…Again

I had another pretty bad retinal bleed again yesterday.  Left eye again, and from the bottom again.  Very similar to the last time.

Like last time, it started with a thread of blood that worked its way up into my vision.  It was a slow bleed, but by this morning there was a lot of shit in there.  A lot.  There’s not much by way of opaque blobs, but it’s a really thick blur in my upper and central vision.

It sucks.

The other thing that sucks is that there seems to be a blob looming at the top now.  I’m not sure if it’s yesterday’s blood that just collected up there (a lot of it made its way toward the upper outside corner), or if it’s another bleed.  I seriously hope it’s the former and not the latter, because what I really don’t need right now is bleeding from both the top and the bottom of my eye.

The last one cleared up pretty quickly, so I can only hope for the same this time once it stops.  It’s hard to tell if it’s stopped already and if things are still just moving around and settling in there or if it’s actually still bleeding.

What a mess.

And there’s just no way to know what’s causing it.  I’m not having new growth/proliferation, my blood pressure is good, I’m not doing any heavy lifting.  Basically I’m being an ideal retinopathy patient.  So the best guess seems to still be that my vitreous is pulling on my retina and its weak vessels.  And if there’s a way to stop that from happening (it happens as we age – retinopathy or not), I certainly haven’t heard of it.

I’ve talked Avastin with Dr. Ophtho in the past and we’ve always come to the conclusion that it’s not the best option, but that was before these last two more major bleeds, so I think it’s time to have that discussion again.  Previously the bleeds were largely just an annoyance, and cleared up quickly, but this is getting beyond that.  We’ll see….

So there it is.

Shit.

And that’s all that this one-eyed blogger can type today.

**Edit:  Since posting this, I received a couple of emails from another PWR (person with retinopathy…?) that helped explain some of what I was experiencing, and ease some of my fears about the bleeding happening in two different places.  He’s not an ophtho, but what he describes is completely consistent with what I’m currently seeing, and really makes a lot of sense.  His name is Jeff Parlier, and he’s given me permission to post his comments here.  Maybe they will be as interesting to some of you as it was to me.  Thanks Jeff!

Hello again Bethany. I just happened to click on your blog page and read your latest bad news. Damn I’m sorry you had an other big bleed. I know it just knocks you on your ass emotionally so hang in there.
I pretty much have the same issues you are. You mentioned seeing a “blob” at the top of your vision. This is actually the bottom of the retina (visual image is flipped) so you likely have a good amount of blood settled at the bottom. I have so much from my last big bleed that when I tilt my head back (looking at the ceiling) I can see a dark pool of blood running, pretty freaky.
One thing I found out was bending over downward (such as stretching hamstrings) would suddenly cause some blood trickling down from the top of my vision when I rose back up. What was happening is the blood at the bottom of my eye was rushing upward as my head was bent over and re-mixing into the vitreous. I thought it was all new bleeding at the time but actually it was old, settled blood. Keep your head position in mind. You may also notice this happening when you tilt your head back (looking straight up at the sky) as old blood at the bottom will run to the back of your eye (macula area) and you might “see” it as trickling down from the top of your visual field.

17 responses to this post.

  1. that sucks 8( about 2 years ago, i was completely unable to see out of my right eye. it took a long time to clear up. i have had laser surgery many, many times on both eyes over the years. my last 4 checkups (i go every 3-4 mths) have been great. no bleeds.
    hopefully this will clear up fast for you and not turn into anything more serious.
    fingers crossed xx

    Reply

  2. I hate reading about your eye bleeds because I wish so bad you didn’t have them. However, I’m always glad you share them with us because they are real, they are life and they are diabetes. I have no knowledge or experience but I’m hoping things improve for your beautiful eyes!

    Reply

  3. Posted by Sylvie on September 19, 2011 at 8:30 am

    Crap! The ups and downs with this eye must be frustrating. Sending you waves of caring!

    Reply

  4. Posted by marion on September 26, 2011 at 12:27 pm

    I’m really glad I happened to read about the ‘blob at the top of the eye’ info from your friend Jeff – I have this exact thing at the moment and it was really frightening the first time I noticed it!… it looked like a black hole – or even like a fingertip at the top of my peripheral vision… but i noticed that if my head was tilted backwards – as in some yoga positions – or just if I tilt my head back, that i could see the trickle…. and if the light was shining in he right way it shows up bright red… so i know understand that it’s probably a pool gathered at the bottom. it’s actually quite a relief just to know what it could be! So thanks Jeff… i’ve got my 6 monthly eye appointment on wednesday and i’m feeling anxious… bleeds in both eyes… i was much happier when i had at least a ‘good’ eye… but hey ho, they still tend to clear. i worry they’re getting weaker though. shit i really need to start my own blog instead of hogging your comments box!

    Reply

  5. Posted by sheena menzies on November 23, 2011 at 8:52 am

    Hi I have type 1 diabetes, had it for 22 years. I have just had 2 lots of laser surgery to my right eye, when on friday, something happened to my eye. I managed to get an emergency appointment with my lovely cobsultant and he said my eye had bled. The problem is I just started a new job last week, P/T. I had been umemployed for 3 years ( I have a child) I told my boss about what happened and I could ‘see’ his mind whirring away as I was talking to him. I was honest with him and part of my job is 3/4 hours cleaning in one go, and the Consultant said to take it easy and not to strain my eye or to do anything strenuous, but not sure how the boss really felt about it. I go to see my Consultant in December, because my eye, yesterday, was lke murky waters. It’s worrying when there are problems with the eyes.

    Best wishes Acer76

    Reply

    • Ugh, that’s terrible timing for having eye problems! (Not that there is any “good” timing.) I can totally relate to the “murky waters”. That’s what my left eye looks like. I hope yours clears up fast! Thanks for writing!

      Reply

  6. Posted by sheena menzies on January 7, 2012 at 4:29 pm

    Hi all just an update on my ‘bleeding’ eye. I’ve now had 3 eye laser treatments, the last one on 20th December because of another bleed. I have now had yet another bleed, quite alot of floaters, lines, it looks as though a small child has drawn over my eye with a black marker pen! lol. I went for an emergency appointment this week because of the worry of the bleed, also when I was out in the daylight and I came into contact with sunshine( it was on Monday 2nd January) I was blinded, I couldn’t see in front of me, my daughter said, mum theres a man there with dogs. I couldn’t see a thing. When I explained this to the dr on eye duty, she didn’t know what it was.:o So again, I have to wait for my eye to settle down and then, more laser surgery, which I find uncomfertable and distressing, but everytime I have laser surgery, just after, my eye bleeds. So that means another lot of laser surgery, as, I have been told there is nothing else, that’s all there is. It’s a vicious circle. Has anyone else had the same sort of problem, or is it just my troubling diabetic eye? Good wishes to all Acer76

    Reply

  7. Posted by Racine S Elsman on January 12, 2012 at 6:55 pm

    Hi…I unfortunately have been diagnosed with non proliferative retinopathy after 25 years with type1 dm…I am extremely anxious and concerned….just had focal laser after a week long struggle on anti VEGF vs laser…still have eye patch on and not sure how vision is but was seeing 20/20 in both eyes with my glasses before…I am super concerned about the progression and with possible future pregancy…how long did u have the background retinopathy before u progressed to proliferative if u don’t mind answering….and how is your vision now…can u work, drive, etc…thx for all your posts

    Reply

    • Hi Racine. Sorry to hear about your diagnosis. :( Unfortunately I really can’t remember how long I had background retinopathy before I was diagnosed with proliferative. What I can tell you is that my first round of laser treatments (for proliferative) stopped the growth of vessels very effectively, and I didn’t have any more until my first pregnancy. I had more laser treatments at that point and no new growth since then. A friend of mine with proliferative retinopathy who has had serious haemorrhaging in the past now has very tight control of his diabetes and hasn’t seen any progression in his retinopathy for many years now. If you’re able to maintain tight diabetes control, you may not see progression either. Obviously nothing’s guaranteed, but I’ve seen evidence in myself and others that retinopathy can be stable with good bloodsugar control, and with laser treatments if needed.

      My vision is mostly fine now. I wear glasses, but I’ve had them since before my retinopathy developed – it’s unrelated. I can see quite well without them. I have a bit of blood kicking around in my left eye from previous haemorrhaging, but it’s more of an annoyance than anything. My night vision is a little bit worse because of laser treatments, but not significantly. I can work, drive, read…anything I could do before, except maybe see things clearly that are absolutely miniscule. (Tiny font on medicine bottles can be tough to read.) But, frankly, I blame that on getting older. ;)

      I know it’s scary, but there’s hope! Your best bet is keeping your diabetes as well controlled as possible – and lots of discussion with your doctor as to whether he has any further strategies for you. Good luck!

      Reply

  8. Posted by Anais on January 31, 2012 at 10:55 pm

    oh no… so if there is no new proliferation, the eye can still bleed? The new blood cells grew in my eye over my pregnancy. It’s been 3 months since I gave birth. I have had laser and am currently getting injections to help the laser work faster and get rid of the blood cells. I thought once those were gone, I wouldn’t be at risk of bleeding. Oh no! If you don’t mind Bethany, what has your doctor told you?

    Reply

    • My ophtho has explained my particular situation this way:

      The proliferative vessels that have developed in my eye(s) can bleed due to various reasons, including extra pressure/strain (e.g. high BP, lifting something heavy, even doing inverted yoga poses that make the blood rush to my head), or tugging on the vessels by the vitreous as it pulls away from the retina slightly (a normal occurrence as a part of ageing), or even just “because”. If those proliferative vessels shrivel up and “die”, and there’s no more blood flowing through them, they wouldn’t bleed anymore. But if they remain active and continue to have blood flowing through them, there will always be the risk of bleeds, simply because they are abnormal and weak vessels.

      At least some of the proliferative vessels in my eye continue to be active, therefore continue to bleed from time to time (usually only minor leaking). Even if I never have any new proliferation, this may continue for the rest of my life.

      My ophtho and I have discussed the possibility of Avastin shots, which have been shown to shrivel/shrink up proliferative vessels in folks with diabetic retinopathy. In the past, he has advised against it because my bleeds were few and far between (and cleared up well on their own), and (according to him) there is some risk of new proliferation occurring after the shots. His explanation is that the same factors that cause them to grow in the first place (i.e. perceived lack of oxygen to the retina) could cause them to re-grow if this additional blood/oxygen source (however weak it may be) is removed. Because I do continue to have leaking, and because I’ve had additional laser treatments to help prevent further proliferation, and because I haven’t had any new proliferation (unrelated to pregnancy) in years now, we may give the Avastin shots a try anyway – but that would only be after my pregnancy, as he can’t give me sufficient comfort that there would be no impact on my baby.

      So that is my particular situation with the explanation from my ophtho. Your situation may be different. If your proliferative vessels have shrunk/shrivelled up, I’m not sure how they would bleed anymore. But if they’re still active, there’s probably still a risk. You should ask your doctor for a better understanding if you’re concerned. If you are still at risk, there are ways to lower that risk (e.g. avoiding heavy lifting, keeping your blood pressure under control, etc.)

      I hope that helps!

      Reply

  9. Posted by Paula on June 14, 2013 at 3:23 pm

    Hello from Liverpool, UK :)

    Just a little note of thanks really. I feel that this blog has helped me breathe the biggest sigh of relief and is helping me through my first ever retinal bleed, which occurred yesterday.

    Following many years of eye checks, laser treatment, meds and hard work to control my sugars, I experienced this bleed completely unexpectedly. I can honestly say it was one of the scariest moments of my life (and for my poor sister who was driving at the time and had me freak out next to her, convinced I was going blind! I’ve promised to pay any speeding tickets she receives due to how she raced me to my amazing eye clinic.)

    I just wanted to pass on my thanks for the efforts you have put into this blog. Dealing with D alone is a lonely, and I admit, quite a scary place sometimes. Dealing with a retinal bleed magnifies these feelings tenfold. Add to this trying not to cause your family & friends too much worry and concern too…… wow, we deal with a lot!

    I’ve found reading your words calming, reassuring and incredibly accurate from my experience of this so far…. I am so glad I found this page :)

    Good health to you all x

    Reply

    • Thank you for your comment, Paula. I’m so sorry to hear that you’re dealing with retinal bleeds. I know exactly how scary it can be and I’m so glad that you were able to find my blog comforting in some way. You’re definitely not alone! Take care, and I hope your eye clears up quickly!

      Reply

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