Really had enough of retinopathy now, when will it end?

[the_anticarb]

Apologies in advance if this post comes across as whining, I'm not in a good place with this at the moment.

It's been three years now since I got proliferative retinopathy, I've had 5 lasers on each eye and a vitrectomy on my left eye. During that operation the surgeon tore a hole in my retina (and neglected to let me know!) so there is some permanent peripheral vision loss in that eye. The other eye has had some bleeding recently, I've had some more laser on it 2 weeks ago (the 5th session) and told that should fix it. With the problems in my left eye I am particularly keen to preserve the vision in this eye.

The trouble is that it's been bleeding again, I had a bleed at the weekend and then some more fresh blood swirls today. It is really getting me down as the first bleed, which was quite dense, had just about cleared and now this has set me back again.

Every time they tell me the retinopathy has been treated it comes back at some point. Now I'm the first to admit I was not in control of my diabetes for many years in the past, but my hba1c has been around 7 or lower the past three years.

I'm at the point now where I just don't believe the doctors anymore when they say it is getting better. What is the point of the doctor looking in my eye and saying it all looks good when 6 or 12 months later the bleeding starts up again? it feels like they are giving me false hope every time they say 'one more session of laser and it will be sorted' as they did the last time, and this latest time (only a few weeks ago). I'd rather have no hope than false hope.

This just feels never-ending. They are running out of room for more laser, and to preserve my driving vision I've already decided I don't want to have any more if this will jeopardise my licence - I'd rather have a vitrectomy as this was successful in my left eye (well has been for the past 18 months)

I had laser two weeks ago and now fresh bleeding, not sure if the laser can make bleeding more likely in the short term?

I just need to know there is an end in sight, as I can't keep trying to go about my daily business and then suddenly I'm seeing black splodges and blood in my vision, it's really interfering with my life.

Anyone out there who's been successfully treated for retinopathy and been stable for a while? how much treatment did you eventually need, and are you scared it will come back? How long did it take from when you first started treatment to your last treatment, is it usual for it to take a few years?

Thanks

 

[Flowerpot]

Hello

I've been down the same path as you and have come out the other side a bit rearranged but still here. I completely relate to your endless saga of laser, bleeds, laser, more bleeds, vitrectomies and just the worrying nightmare of proliferative retinopathy.

My active treatment went on for about 8 years in total, I had maximum laser on both retinas, a retinal hole, retinal membrane removed, vitrectomy in both then needed a cataract in my 30's as my lens got damaged during the 2nd vitrectomy. It is a relentless disease and although my control was alright this seemed to have no impact on the progression of the disease.

Having vitrectomies certainly helps in the dispersal of bleeds when they happen.

My happy ending is that I have some sight in one eye which is not great but compared to none which I endured for 9 months it really is like winning the lottery. I had my driving licence revoked and lost my job but both those really seemed insignificant compared to having enough sight restored to live independently.

I am reviewed every 6 months and am completely terrified of it returning but for about the past 8 years I have been stable apart from a cataract in the other eye, even so it's never far from my mind. I keep my control as good as I can and just hope for stability.

It does seem like a never ending journey into the unknown but there is a stable place to reach. It might not include a driving licence and I hope in your case it does but it does eventually calm down. It's the fact it is right there in front of you whatever you do that gets me, you physically can't look through it or forget it for half an hour because whatever you do as soon as you open your eyes in the morning,you have got to look through it.

Don't despair, proliferative retinopathy is a long road but you can emerge with reasonable sight and get to a point where the intensity of treatment subsides. I wish you all the very best.

 

[phoenix]

It's out of my knowledge zone but really want to send a hug,
XXX
P

 

[bernie.freeman]

Hi,
I am sorry that you have been dealt a rough deal. I understand that it is so frustrating. I have had retinopathy problems for a while now, they have not deteriorated, thank god. I too send you big hugs xx

 

[the_anticarb]

Thanks
flowerpot I have pm'd you, not sure if you can get pm's though as you may need to make 5 posts to make/get pms?

Bernie what happened to you how much laser did you have and how long have you been stable?

It seems retinopathy is different with everyone and the docs find it very hard to predict what will happen, I was told by an eminent consultant I had a very low risk of it coming back based on the angiogram he did of my eyes, but I'm sitting here right now with streaks of blood in my vision so what does he know?

 

[Flowerpot]

Hello

I have read your PM but can't reply that way at the moment

Generally in my experience a vitrectomy operation on its own removes the jelly from the inside of the eye which is then filled with a liquid and/or gas. I had laser and cryotherapy, where the retina that is damaged is frozen, at the same time as the vitrectomy. I did have some bleeds post vitrectomies but because there isn't a lump of jelly to trap any new bleeds they wash away in the fluid relatively quickly by your own body. You don't end up following round streaks of blood for weeks on end watching them change colour and eventually fade away. I'll get back to you when I have reached the magic 5 posts on this subject. Take care