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Proliferative Retinopathy - Lots Of Vitreous Haemorrhages

R

runningwitht1

Member
Messages
17
Type of diabetes
Type 1
Treatment type
Insulin
Hi all,

T1 diabetic for 29 years and in the last few weeks diagnosed with proliferative retinopathy in both eyes after having a big vitreous haemorrhage in the left eye.

Had first laser on Tuesday just gone with the next planned for Tuesday coming.

I had another big haemorrhage in the left eye on the way to the laser on Tuesday. The surgeon said he would need to go ahead anyway as they could not really delay starting treatment.

I managed to have a total freak out just before he started (unlike me - I’m normally a very calm person). The surgeon spent some time re-assuring me, he said I would not lose my vision from this disease and promised me I would be able to run again once things were stabilised (running is my big passion in life)

The information leaflet they gave me said it was normal to experience floaters after the surgery. I went home and over the next couple of days the haemorrhage started to drain and my vision was clearing up again.

Then on Friday I had another haemorrhage and since then keep getting lots of them. The vision in my left eye seems to be permanently filled with that black smokiness and streaks. I keep reminding myself of what the surgeon told me but I can’t help freaking out and bursting into tears.

Is this normal to get more bleeds after laser, has anyone else here experienced similar?

Also I’ve only been at work one day in the last three weeks. My GP signed me off until Monday just gone. I work at a computer screen and went in on Monday and really struggled using just the right eye. Also managed to get very emotional in the office. I’ve been off again since the laser on Tuesday and have made a telephone appointment with the GP tomorrow. Is it reasonable to ask if she can sign me off for the next few weeks, the surgeon thinks I need another two lasers to the left eye which will happen over the next couple of weeks and then I’m being followed up at the eye clinic the following week. I really hadn’t wanted to take too much time off work as want to keep as much sense of normality but realise I’m really struggling with both the vision and emotional side of it.

Any thoughts/advice/reassurance much appreciated!
 
Hi runningwitht1,

Although my eye issues are not exactly the same I feel for you.
I have been going to the eye hospital on and off for 5 years now
which thankfully seen a steady improvement with each visit.
The surgeons now have many tools to their arsenal to fight these issues.

I currently have a Diabetic Macular Oedema which has improved considerably
through having some eyelet injections, as a side issue of this medication the
(Very mild) retinopathy I had has cleared up completely apparently.

You are in the best position, in the fact that you now have professionals
looking after you and treating you. It does feel time heavy in relation to
time off work but on the balance of what could happen if I ignore it
then I do not have an issue taking the time.

You know when you've been going a while as you start joking with the staff
whilst everyone around you is sat like Rabbits in the headlights. It works, keep
positive and you will indeed see that improvement step by step.

I appreciate it is a scary time and to be honest being told I needed to go to the
eye hospital after a routine eye exam was more terrifying than my diagnosis.

Keep faith, it can get better.

An edit.....I forgot to mention that I am typing this as I slob on the settee after
coming back from a 35 mile cycle.
 
Thanks FantomPoet!

Good to know you’re able to cycle and your vision has improved! Just before this happened I was toying with the idea of getting a new road bike and getting back into the cycling. I’ve been off the running since March as I managed to get a stress reaction in one of the metatarsals in my left foot from all the running and was hoping to be given the all clear to run again at the end of this month. I’ve been joking to my friends that I feel lucky that if I had to get proliferative retinopathy at least it’s happened while I’m on a running ban due to the stress reaction, it would have been even more frustrating if this had all started after being given the all clear to run after my injury!

I’m trying to stay as calm as possible about it all. I’m sure the surgeon wouldn’t have assured me I won’t lose my vision and would be able to run again if he didn’t believe it but I keep thinking maybe he said it to me to calm me down. As soon as he put the lens in to hold my eye open I’d started shaking uncontrollably and freaking out and he had to call a nurse in to comfort me during the procedure. At least I’ve got through the first session and know what to expect next time.

I just miss my routine of going to work and running. I’ve never had to take more than a week or so off work before due to illness - bugs etc so worry about what my company would think about me needing longer off. I really don’t like the thought of having to ask my GP if she will sign me off but my friends think I really should.

Normally I deal with stuff by going out for a run. No problem seems too big when I’m running! It’s hard when that is taken away from me but I’m trying to just go for long gentle walks to try and keep my mind off things and hoping that walking isn’t going to make the condition worse!
 
runningwitht1 said:
I really don’t like the thought of having to ask my GP if she will sign me off but my friends think I really should.
Click to expand...
Hi, In my opinion, if you need more time off 'emotionally' then go to see your GP. Your GP won't sign you off unless they think you need it. Don't take this the wrong way, but how productive will you be at work of you aren't in a good place? I was signed off for nearly 3 weeks when I was diagnosed as I just needed some time to be left alone!
 
Thanks archersuz, you are probably right. I wasn’t much use last Monday when I tried to work - a mixture of tiredness trying to read my screen through a thick haze of haemorrhage and feeling very upset. I will see what my GP thinks when I speak to her later.
 
Hi ,

I totally understand how you are feeling as this has been in my mind since i had a viterous haemorrhage in December 2017.

Since then I had , lasers, 2 vitrectomy surgery, 1 cataract surgery, 1 anti vegf injdction ( lastest ) and now its recovering in till date.

During recovery I had bleeds twice every other month and freaked me out.

However its a long recovery process but yes I do feel improvement overal.

All I can say is tht be patient, have faith, follow your surgeons instructions, and keep your BG level in good control.

I think that the earlier you get it treated the better it is.

I remember seeind some members here having multiple vitrectomy and injections for multiple times through years

Keep your head up and you wil get it through..

You are not alone I totally understand hw it feels till date..

Take care and get well soon
 
This is such good advice for anyone dealing with health issues like proliferative retinopathy or anything else that affects a person like it can. Thank you. And best wishes @runningwitht1. xx
 
Hi @runningwitht1 I am thinking of you and sending you warm wishes. I agree with others, making a GP appointment is likely to help you a lot at this point. IMHO your anxiety is "a normal reaction to an abnormal situation" and is to be expected. You appear to be managing it really well and gaining further info and reassurance from your GP, and over time your specialist and the nurses who work with him will help you.

When I've had procedures and surgeries I have sometimes phoned the clinic and spoken with a nurse afterwards to report any issues and make sure everything is going to plan. If they feel you should come in for a check-up with the specialist they can let you know. Please don't hesitate to call them or see your GP if you need to, in my experience it's better than having unnecessary anxiety. The time after and between treatments is a time for your body to heal. We are all with you, keep up the good work.
 
Thanks everyone for your kind replies! It’s so helpful to know there are others who have gone through this and know what it’s like, both from the eyesight and emotional point of view!

I spoke with my GP on Monday and she has signed me off for a couple of weeks so I don’t have to get anxious about work plus hopefully the current haemorrhage will have drained a bit by then.

Second lot of laser today, the surgeon was unable to complete the session as he said the view was quite hazy in places from the most recent bleeds but at least he managed to do some. He said he could also see his laser from last week and it looked good.

Because of the current bleed he is delaying the next laser for 4-6 weeks to allow it to hopefully clear. He said he did not know at this stage if I would need a vitrectomy but I suppose that depends on how the current bleed clears.

He re-assured me for the second time that I was not going to lose my sight. He said my vision was very good and the retina looked healthy and undamaged aside from the neovascularisation, it’s reassuring but I don’t think I’m entirely going to be convinced until I’ve been told it’s stable.

Apparently my version of this condition is called florid as it happened very rapidly since my last screen in September, I switched from a vegetarian to vegan diet and my BG control, my general health and running all improved rapidly as a result of this. I was feeling so super healthy and energised it just seems sad that as a consequence this has happened! My DSN has told me to carry on with this lifestyle and level of control as it will be better in the long term!

I have a follow up appointment in the eye clinic next Friday so they will see how I’m doing then.

Thanks again everyone!
 
I have had seven lots of laser on my right eye, with only very small bleeds, and now scheduled for my cataract surgery on my right eye now that my retinopathy has settled down. I also struggle after laser due to my reaction to light after wards, I also work with computers and the screen really does punish my vision. You have done the right thing in getting time off work until the haemorrhage drains. I tend to do my freaking out after the laser, even thought the car had been stolen, until my wife pointed out I was looking for it on the wrong car park floor!! I hope everything settles down for you.


Take care
 
Thanks for replying Johnpol. Hope your cataract surgery goes well.

My last haemorrhage was starting to clear up and this morning had patches of pretty clear vision. Had had a couple of small floaters appear which rapidly disappeared within a couple of hours.

Then this afternoon took a gentle walk up to my GP surgery to get out and pick up my fit for work note and had another big bleed on the way!! So frustrating! Back to having black smoky vision and big black streaks again. It’s odd that it happened nearly the same number of days after the laser as the last big bleed did. I read somewhere that this sometimes happens where the laser shrinks the new vessels and causes it to pull on the vitreous and causing the bleed so trying to stay positive and hoping it’s actually a sign that the laser is doing its job!
 
Its hard to stay positive when these things happen, but the laser must be starting to work. It seemed like I was always getting laser treatment, I have lots of floaters constantly there, but luckily no bleeds. Hope it really does settle down for you.
 
Being referred to the vitreal-retinal surgeon following my follow up on Friday to discuss possible vitrectomy. Getting several new floaters daily and a couple of pretty big haemorrhages a week now and can’t really see anything through the left eye. It’s like looking through watery thick black smoke!

The good news is the doctor I saw on Friday agrees with the laser surgeon that once the treatment is complete my vision should return to normal as aside from all the new blood vessels the retinas look healthy and otherwise undamaged, it’s just the view is being obscured by all the haemorrhage in the vitreous so that’s a positive!

I’ve done the bad “google research” thing on vitrectomy recovery. Has anyone else had a vitrectomy and had to do the face down “posturing” thing afterwards. I’ve also seen that you can’t fly for at least 2 months after vitrectomy due to the pressure and the presence of a gas bubble. I’m due to fly to Oslo and Berlin at the end of August so guessing I will have to cancel my trip
 
I was meant to have had laser last week on the left eye but the hospital called me an hour before to cancel as they had lost my notes! (They turned up at the hospital where I have my check ups)

Was very frustrating as I’d gone just over 2 weeks without a big bleed and my vision was almost clear again in that eye and they rescheduled for the following week (this week) with a different specialist at the hospital where my notes were.

Then on Saturday just gone I had my biggest bleed to date, with new symptoms of flashing green spots of light plus a green glow in parts of my vision if outside in the sunshine. Was advised to go up to the eye A&E by 111 in case of a retinal detachment. Fortunately no detachment but they said it was a particularly massive bleed and that I should keep my laser appointment although it was unlikely they’d be able to laser the left eye but perhaps they could do the right eye.

Saw the specialist yesterday who happens to be the lead retina specialist for the trust. He said it would be a bad idea to laser the right eye as I seem to have bleeds after laser and if that happened in the right I’d potentially have no vision at all for a while, he managed to do a little laser in the left although his view was hazy.

He was also I think a lot more honest with me than the other laser surgeon as he told me that the left eye was very badly affected by PDR and he could not give a figure on how many laser sessions it would need other than “as much as it needs”. The first surgeon had said three and had also said it would be stable and I’d be able to run by the end of the summer and I would not lose my vision but now I’m wondering if he’d just said that to calm me down at the first appointment.

I’m going back for more laser in the left eye in 2 weeks and I am getting more scared now that I am going to lose my vision and my mental health has plummeted this week as I’m starting to feel like my whole life has been put on hold. I am still signed off work, can’t run or practice yoga or feel like I can’t make any plans. I’m meant to be going on holiday at the end of the month but don’t know if I should cancel or if I should just go, even with the vision problems.

It helps reading everyone else’s experiences here and helps me feel less alone!

Has anyone here managed to go from very bad PDR to managing to keep their vision with lots of laser?
 
I have also had simular problems, I've been type 1 for 37 years I had bleeds in both eyes, I had many laser treatments then vitrectomy in both eyes.
I stick to rules that work for me.
Exercise even though I'm disabled
A healthy diet with plenty if red veg and fruit
Lutein eye vitamins
And keeping control of my blood sugars especially since using the freestyle libra my eyes have improved
 
I have had 5 in right and3 in left about 12 years ago.now I have been told need more in left. They can only do a maximum of 5 in each. Will lose liscence now. Got a car and 2 vintage motorbikes ( my hobby) will have to use bus or cycle. Type 1 for 53 years
 
What are u using to control blood sugar? Which insulin and dose?
 
Thanks for the replies. Hope everyone is doing well.

I’ve had four partial laser sessions to the left eye now. I say partial as I’ve pretty much been continually having vitreous haemorrhages since this all started in May and the laser surgeon can only work with what he can see.

Saw the vitreo-retinal surgeon last week and will now be having a vitrectomy of the left eye at some point over the next couple of months. I can’t really see anything through the left eye at the moment and he had to ultrasound my eyeball as he could not see my retina. He said the recurrent haemorrhages are being caused by traction where my abnormal vessels are pulling the vitreous?

He will cauterise these vessels and do some laser and I’ll have an avastin injection the week before. He seems to be pretty confident this will sort things out. I just hope so (having read stories of multiple vitrectonies being needed but he said this is very rare). He said i May end up with a gas bubble (an I right in thinking this would be if the retina becomes damaged during the surgery?)

All the eye doctors and surgeons I’ve seen seen confident that I *should* keep my vision and that my retina is in good health behind all that haemorrhage and I’m sure they wouldn’t just say this if they didn’t mean it.

I’m only four months into this journey and pretty fed up with it. It’s inspiring to read stories of others who’ve been dealing with it for years!

I’m finding it harder to maintain good control now I’ve not run for months but am trying my best to keep things as tight as possible.
 
Hey all!

Thought I’d update this post with what has happened with my proliferative retinopathy since I last posted in September and what I’ve learnt.

Despite numerous laser sessions in the left eye I had too many vitreous haemorrhages and my visual acuity went down to “hand movements only” and my vision was just grey cloudiness where my vitreous was filled with blood and from the traction into my optic disc (where my vitreous was starting to pull away from my retina). I ended up having a vitrectomy with an ILM peel and endolaser in November. My vision in that eye 2 months later is dramatically improved but still poor at 6/36, I can’t read through that eye at all but I can see everything else, I have my “widescreen” vision back, my depth and distance vision has returned too. It’s just a bit hazy.

The medical retinal team examined my eyes at the beginning of January and said that at age 40, I had the beginning of bilateral cataracts and this was causing the haziness but I saw the Vitreo-retinal surgeon last week and he disagreed saying there was not much of a cataract in either eye but that not all the vitreous is removed during vitrectomy and I still had some over my lens and this still contained red blood cells from the previous haemorrhages but that they should clear over time. He also said that diabetic eyes are often protected from cataracts as they are caused by oxygen on the lens and diabetic eyes tend to lack oxygenation.

The good news is I’m now considered a low risk patient. He said that I have what they call “burnt out retinopathy”, meaning I’ve had enough laser in both eyes to completely burn away the disease and that I shouldn’t need any more treatment. No more laser for sure, potentially more surgery if the haemorrhage in the remaining vitreous doesn’t clear but my eyesight is now out of danger 9 months after my first vitreous haemorrhage.

It’s such a relief. I’m back out running, coming first in age category in my local parkrun regularly and going upside down in yoga where I wasn’t allowed to during my retinopathy journey.

I wanted to share my experience so that anyone who is just starting out with a diagnosis and treatment can feel re-assured that there is so much that can be done to save our sight. The fear and hell that I went through last summer is still very fresh in my mind so I’m hoping this can be of some help to others!
 

This is brilliant news. How fantastic that you are out running and doing yoga again! Thank you for sharing. My husband knows all too well the fear and hell you describe, but also seems to be turning a corner with his retinopathy / maculopathy journey.
 
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