1. This site uses cookies. By continuing to use this site, you are agreeing to our use of cookies. Learn More.
  2. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  3. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2019 »
    Dismiss Notice
  4. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Vitreous haemorrhage / PDR

Discussion in 'Diabetic Retinopathy' started by Becks33, Sep 13, 2019.

  1. Becks33

    Becks33 · Well-Known Member

    Messages:
    67
    Likes Received:
    8
    Trophy Points:
    8
    Hello everyone again

    I’m 24 and yesterday I suffered with a vitreous haemorrhage in my left eye it’s like little black lines and dots with a stain of red tint in my vision, whole eye is blurred I was diagnosed with PDR in February aand I have had 8 sessions of laser treatment since then and Everytime I go back I get horrendous news and my eyes seems to be getting worse I managed to get my HbA1c down from 11% to 8% in three months ... I’m in Ireland atm and all of a sudden had flashing lights and now a huge bleed in my vision I’m so stressed and I cannot relax and so scared of m future has anyone else experienced this what is going to happen to me???? Please can someone re assure me my stress is going to kill me and I don’t. Feel like I want to live anymore I’m not able and my doctors are not emotionally helping me through this they just keep telling me I’m going to go blind
     
    • Hug Hug x 3
  2. Frankf300

    Frankf300 · Newbie

    Messages:
    4
    Likes Received:
    2
    Trophy Points:
    3
    I’ll be 30 in a couple of months and you may have seen my thread with the same title as yours...I’m going through almost the same thing. It does hurt me to see that someone as young as you is going through this, but you need to understand it’s not the end. I will apologize in advance because I know our healthcare systems are rather different as I’m in the U.S., but at the end of the day we’re all fighting the same battle with this.

    Again, excuse my ignorance since I’m not 100% familiar with the healthcare system there. Do you have the option to see another Dr? One that may not constantly use the fear tactic on you? That’s what I felt I needed to do and it’s going to ultimately save my vision. My original Dr did not like me asking questions, would not inform me of anything going on except for the bare minimum. Once my retinopathy advanced to proliferative I realized I needed to find someone I truly felt comfortable with. My new Dr. does not sugarcoat my situation and has explained how severe and dangerous it is but also has an amazing outlook on my future as long as I stick to treatment.

    Have they informed you that your rapid decrease in A1C will make the retinopathy worse? You’re doing the right thing by dropping your A1C, but in the case of such severe PDR (same as myself) it needs to be dropped very slowly over the course of many months. The sudden drop will in the short term make the condition worse.

    When I still only had NPDR I also had macular edema and was treated with micropulse laser which did very little for me and I progressed to PDR. Is there any way at all to be considered for anti-VEGF injections? As I said in my thread I was trying to find a way to avoid them at all costs and go the laser route, but after seeing the photos of my eyes and the Dr explaining to me what my future could possibly look like with laser I immediately sucked it up and went for the Lucentis injection. I presented with such bad symptoms he would not allow me to leave the office without treatment as he said it could get to the point of no return if I let it go. I know here the FDA has approved these drugs for PDR and that’s an issue there, but do you also have macular edema that they can use that as the reasoning? My Dr is confident the injections are going to make my PDR settle and clear my macular edema. I only had the injection a few days ago and I have not seen this clear in over a year and the blood in my eye is clearing.

    Lastly, please see a Dr. as soon as possible. The flash you saw is very concerning and could be a sign of retinal detachment especially with the bleeding that came with it. I have partial retinal detachments in both eyes because I waited a few days too long. Mine won’t require surgery, and will heal but I probably could have avoided it entirely.

    Please don’t give up. I had been going through a really bad bout of depression after my first big bleed popped up when I woke up one morning a couple weeks ago. I neglected my 2 kids and my wife because I was convinced it was the end. It’s not though. It took 1 amazing Dr for me to realize I can fight this thing especially with the advancements we have now. I have many more rounds of treatment ahead of me, but right now I’m driving and more importantly can see my kids faces clearer than I ever have in the past year! Just keep fighting and do anything within your means to get the best treatment possible! I was very close to getting a flight to the UK to check out the Noctura mask. The stress and anxiety is going to make the condition worse also, so as hard as it sounds try to stay as calm as possible and focus on fighting this!

    Keep pushing, don’t give up! My thoughts are with you!
     
    • Like Like x 2
    • Winner Winner x 1
  3. Dark Horse

    Dark Horse · Well-Known Member

    Messages:
    1,325
    Likes Received:
    738
    Trophy Points:
    133
    Sorry, but you need to go to accident and emergency as soon as possible in case you have had a retinal detachment (a possible complication of PDR). The usual advice is to go within 24 hours of onset of symptoms so as you posted a day ago, you really need to go NOW as if there is a detachment, the sooner the retina is re-attached, the better. Sorry you are so worried but try to use that worry to make sure you attend all your appointments and follow the advice the doctors give you.
     
  4. Becks33

    Becks33 · Well-Known Member

    Messages:
    67
    Likes Received:
    8
    Trophy Points:
    8
    Hello

    As soon as this happened I went to A&E in Ireland last Thursday and I’m back in England now and I have an appointment tomorrow with my ophthalmologist but the ophthalmologist who I saw in Dublin told me there’s no sign of retinal detachment which is good but th condition of my eyes is very bad and all I can see now is blood
     
  5. Becks33

    Becks33 · Well-Known Member

    Messages:
    67
    Likes Received:
    8
    Trophy Points:
    8
    Hello I have replied to you in inbox
     
  6. Dark Horse

    Dark Horse · Well-Known Member

    Messages:
    1,325
    Likes Received:
    738
    Trophy Points:
    133
    It's good news that there's no retinal detachment. In the meantime, avoid anything which increases your blood pressure (like strenuous exercise) and you may like to try sleeping with your head elevated so the blood settles under gravity.
     
    • Like Like x 1
  7. Becks33

    Becks33 · Well-Known Member

    Messages:
    67
    Likes Received:
    8
    Trophy Points:
    8
    My bleed is in the top left of my left eye , it looks like spiders legs with dots around it and a blurry red tint around it is that normal?
     
  8. Becks33

    Becks33 · Well-Known Member

    Messages:
    67
    Likes Received:
    8
    Trophy Points:
    8
    Also how do these go?? Have you experienced this before ?
     
  9. Dark Horse

    Dark Horse · Well-Known Member

    Messages:
    1,325
    Likes Received:
    738
    Trophy Points:
    133
    Yes, that's not an unusual appearance for vitreous haemorrhage. When you said 'all I can see now is blood' I thought you meant that the blood was completely obscuring your vision. If the blood is located on the left, you could try sleeping on the left to try and avoid it drifting across your central vision. The blood should gradually clear by itself but sometimes people need a vitrectomy where the jelly in the eye is removed.

    Some info here:- http://www.diabeticretinopathy.org.uk/vitreous_hemorrhage.html
     
    • Like Like x 1
  10. Becks33

    Becks33 · Well-Known Member

    Messages:
    67
    Likes Received:
    8
    Trophy Points:
    8
    No I can see but like in the top left there is red coloured lines and dots with a stain of blurred red tint there it’s so distracting and annoying and gives me headaches! It says on that link the it should clear itself if you have had enough laser? I’m hoping I clears itself and my eyes stop growing ... I don’t really trust my ophthalmologist and I’m trying to control my diabetes as good as possible but apparently the growth in my eyes at the moment is dangerous but I don’t understand I have had loads of laser and no improvement can you give an explanation for this?
     
  11. Dark Horse

    Dark Horse · Well-Known Member

    Messages:
    1,325
    Likes Received:
    738
    Trophy Points:
    133
    As laser destroys parts of the retina, ophthalmologists try to use the minimum effective amount of laser to stop new vessels are growing. It's not unusual to laser, check effectiveness, repeat with further laser, check again and so on. If someone is given the maximum amount of laser from the outset, they are likely to have problems with peripheral vision (so will be unable to drive) and also night vision. Using the minimum effective amount of laser reduces the chance of these side-effects, although for some people it is the only way that their central vision can be preserved.
     
  12. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

    Messages:
    1,497
    Likes Received:
    1,049
    Trophy Points:
    198
    Sending huge hugs as I went through this 16 years ago and I am NOT blind. I cannot guarantee that this won't happen to you but don't get a guide dog just yet.
    I had haemorhages in both eyes though not simulaneously. It happened post pregnancy when my blood sugars had been well controlled to a time when they were less so (diabetic eyes don't seem to like rollercoasters!).
    It was shocking and I had also been having laser treatment. I went to Moorfields in London and was seen by Mr Eric Ezra who subsequently performed a double vitrectomy. I think they get into the retina and catuerise the bleeding vessels and I was told that back in 2004 my operation had a 70% chance of saving my sight provided I complied wit the post operation recovery process which I did. I have been left with plenty of vision (enough to read, ride a bike but not drive a car and to use a phone).
    You are in Ireland so I assume that this operation may be available to you. Please keep on with your improvements in your blood sugars and I am hoping you have the chance to use a freestyle libre to make this easier but take the reduction gently to avoid those roller-coasters!
    Wishing you every success in whichever treatment you end up with and please ask if you have any questions!
     
  13. Becks33

    Becks33 · Well-Known Member

    Messages:
    67
    Likes Received:
    8
    Trophy Points:
    8
    Hello

    Thank you for responding to me!

    Omg I’m thinking will I ever have children because I don’t want that to happen to me could you see the haemorrhages in your eyes? Can I ask why you cannot drive a car? The one thing I don’t want to loose is my driving liscence can I ask have you had any bleeding since? And how many laser sessions you had ? They are thinking for me no more laser as it has not worked my blood vessels are quite aggressive and will need a lot of laser to cauterise these vessels... I have been told they have not got any worse and if they start to grow again I will need a course of injections possibly a vitrectomy or eye surgery so I’m frightened and just want this to be over
     
  14. Mike D

    Mike D Type 2 · Expert

    Messages:
    7,407
    Likes Received:
    11,064
    Trophy Points:
    198
    @Becks33 ... Eyes first ... children last. Vision is FAR more important
     
  15. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

    Messages:
    1,497
    Likes Received:
    1,049
    Trophy Points:
    198
    I know it is scary and get that the anxiety is overwhelming at times. Things sounds positive for you in that your condition seems to be stabilising and there are other treatment options available before you even have to think of the op. I just wanted to point out that there are options even if laser hasn't been successful.
    I had aggressive bleeds too and as I recall my loss of sight was dramatic in both eyes went over 4 months. The surgery saved my sight but left me not enough to legally drive but everything has been stable since and I have been given the expectation that it will remain so!
    So bear that in mind and do what you CAN other than fret, which for now is stabilising your blood sugars. It may never come to losing your licence and even if it does you will cross that particular bridge when you get to it.
    Nearly going blind was my wake up call to take better care of myself and I'd be pretty useless to my 3 kids if I hadn't. Best to get confident with achieving a stable HBA1c before throwing in babies ! Lovely but tend to present a challenge from a diabetes point of view...
     
  16. Becks33

    Becks33 · Well-Known Member

    Messages:
    67
    Likes Received:
    8
    Trophy Points:
    8
    Did the vitrectomy or surgery affect your peripheral vision why can’t you drive??? I thought based only affects that? Have the dvla told you you can’t drive then??? The job I want to do involves driving omg I hate this disease so much the diabetes and retinopathy... well the laser has not done much for me but they don’t want to do anymore laser as it won’t do me any good! Long term ... but I want those blood vessels gone out of my eyes I don’t want the possibility of another bleed they are horrible!!! I want to enjoy life I’m 24 and all I do is sleep everyday
     
  17. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

    Messages:
    1,497
    Likes Received:
    1,049
    Trophy Points:
    198
    I was a bit of a liability on the roads so they are probably safer with me on them on my bike! I don't know the technical details but in repairing the damage to my retinas caused by the leaky vessels the process itself left some dammge but there again I went from blind to sighted which is amazing IMO. I think that is it however you should discuss the success rates etc. with your consultant. It could well be that x years on things have got even better and I suspect there will be different individual responses.
    It is a lot to cope with at a tender age for sure and your friends are probably doing stuff that they can 'get away with' although eventually those things do catch up to you!
    All I can say is you are not alone with diabetes-induced fear/rage/guilt. It isn't fair and yet every day we have to carry on doing what we think is the right thing with our insulin and food choices and often screw it up.
    I can remember being floored with a ketoacidosis/kidney infection episode and that first time of feeling fear for my future when I'd previously felt immortal!
    I hope whilst all of this isn't going away that you can distract yourself occasionally with some fun stuff? If you are finding it hard to get away from the anxiety have your considered getting some chemical help from the gp or seeing a consellor? Could be a good 'crutch' and I hope you'll update us or have a good old vent/rant on here too from time to time!
     
  18. Dark Horse

    Dark Horse · Well-Known Member

    Messages:
    1,325
    Likes Received:
    738
    Trophy Points:
    133
    It's PRP laser which affects peripheral vision. Good peripheral vision is necessary in order to hold a driving licence. A small to moderate amount of PRP won't affect your ability to drive safely but a large amount will. Everyone who has had PRP laser (in both eyes for a normal driving licence or in either eye for a bus, coach or lorry licence) has to notify the DVLA who will then arrange for them to take a field test in order to see whether or not their peripheral vision has been affected so much that they are not safe to drive. If someone fails the field test, they will lose their driving licence.
    https://www.gov.uk/diabetic-retinopathy-and-driving
    https://www.diabetes.org.uk/guide-to-diabetes/life-with-diabetes/driving/driving-and-eye-tests
     
  19. lefeilouss

    lefeilouss Type 2 · Active Member

    Messages:
    39
    Likes Received:
    8
    Trophy Points:
    28
    How many vitrectomies / lasers and injections do u hv after surgery or before and how long it took for your eyes to be stable? did u have re current bleeds post op? Hope you can share
     
  20. NicoleC1971

    NicoleC1971 Type 1 · Well-Known Member

    Messages:
    1,497
    Likes Received:
    1,049
    Trophy Points:
    198
    Hello
    No laser and no bleeding post surgery.
    At the time (2004) I had gas bubbles in my eyes which kept things stable for the post op recovery phase of 6 weeks. I had to lie face down for most of the day which was hard as I had an 18 month old at the time (family were great here).
    The surgery was successful such that no clinicians are expecting any further bleeds although I am at increased risk for cataracts. 15+ years on this has proved to be the case so definitely a success IMO.
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook