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Retinopathy and terrified

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VixyA86

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I have today been told that I have proliferative retinopathy and have to go back for laser treatment next Friday. I'll then have to have lucentis injections on top of that. This seems to have developed over the last few months after recently tightening up on my control. I haven't had any significant vision loss yet (touch wood), but I'm absolutely terrified. My consultant said that the laser treatment may affect my peripheral vision - will I notice a big difference? Will I still be able to drive? How well can I expect my eyes to recover after this (provided that I keep my diabetes well controlled)? If anyone has anything to offer I'd be grateful, I am so scared and feel devastated. I'm Type 1, 29 years old.
 
Try not to worry too much, the laser surgery is slightly uncomfortable and my Ophthalmologist said it was fine to take paracetamol before the surgery to help ease the discomfort, it only takes around 5-10 mins but your vision will be effected for many hours after so make sure you get a lift from the clinic appointment. Not had the Lucentis injections before so can't help there unfortunately.

As for losing some peripheral vision, it depends on which part of the eye they are lasering but your consultant is right to say that it can lead to some loss of peripheral vision, I have some blind spots in my left eye but not enough that it effects my ability to drive as the DVLA still issues me with a 3 year driving licence, however post-surgery they do insist that you have to do a field vision test when you renew your driving licence, depending on the results they will decide if you are still fit to drive and will issue you with a 1,2 or 3 year licence.

Whilst your there ask your ophthalmologist (and also your diabetes consultant) for advice on improving your bg levels if you've been uncontrolled for some time as a sudden tightening of bg control can make retinopathy worse, if you've not seen the following before then I recommend you have a good read around as it has a wealth of information on diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

Good luck and hope it all goes well next week.
 
Hi VixyA86

I'm so sorry to hear you have proliferative retinopathy, As noblehead says, laser surgery is usually just a bit uncomfortable and sounds a lot more frightening than it is in reality. My eyes were very light sensitive after laser and I could sometimes see the pattern of laser burns in front of me for a few days before they faded- this was from treatment I needed in my central field of vision.

I realise it's not just the surgery but the implications of having proliferative retinopathy that are terrifying. For what it's worth I needed maximum laser treatment on both retinas at least 20+ sessions on each eye to try and halt the disease - which my ophthalmologist described as very aggressive - and it probably wasn't until at least 5 treatments on each eye that I started to notice it permanently affecting my peripheral and night vision. I haven't had lucentis injections so can't help you on that.

It is entirely perverse that rapid tightening of glucose control can make retinopathy worse but unfortunately it is the case. Discuss the best way to achieve good control with your eye team/diabetes team so that you get maximum benefit from the treatment.

I wish you well with your treatment next week . Good luck.
 

Hi Vixy,

I am the same age. I am not at the laser stage but I have been told my right eye is in stage one. I cried for days. I cant give any reassurance because I don't know but all I can say is I just let myself cry. I went for a run. I watched movies. Do what you need to after getting this news, for you. It sounds like though that they are on it which is awesome! If they haven't suggested anything more then maybe its taking it day by day. I know its not easy but it sounds like you have done all you can do today, maybe take the night off and start researching tomorrow. My GP sat and explained it all to me so I didn't worry maybe that would be helpful? Thoughts with you
 
Thanks Fayefaye, I know exactly how you feel; I have had some retinopathy in the past but it went away. I have been clear since 2009 with only some very minor background changes, but this has now really thrown me. It's not having the treatment that scares me, but the thought that what if it doesn't work? What if my eyes don't get better. All I can do at this point is trust my consultant, who fortunately is great, as he seems sure that this is the best course of treatment for me. Send me a message if you want to chat more privately, I don't really know anyone else who is diabetic and it's good to talk to someone who understands
 
 
Hi Vixy My retinopathy problems started about 8 years ago , it started after being told I must tighten my control. Apparently this often leads to retinopathy.to be told this I know gut wrenching. But don't despair,there is light at the end of the tunnel.I had laser both eyes which did caused peripheral loss in my left eye. Laser I thought was no worse than.bright ights being shone in your eye. If the laser doesn't work and your consultant recommends Lucent is injections, go for it . Honestly, they are not that bad.just the thought is worse than the deed. I lost my licence but regained it with Lucent is injections. Don't give up hope because. There are other treatments in the pipeline,and they are much less invasive.
 
Thanks petdell
How bad is the peripheral loss? Did lucentis improve your vision?
 
I read your post and meant to reply sooner as it played on my mind and really struck a chord! I have had extensive laser treatment on both eyes and am having lucentis injections to one eye. You don't say whether you are going to have treatment to just one eye or both? Like you I lived in fear of losing my driving licence too. I was pretty worried when I had my first session of laser treatment as it was quite extensive but I was lucky to know my eye consultant for many years and felt really comfortable with him so I actually had an hour session as he had the time and he asked if I was happy to continue for longer, I just wanted it all done so proceeded! That says in itself that I was able to tolerate an hour! Lots of bright lights and sometimes a dull ache and as noblehead says check with your consultant and take a couple of paracetamol if allowed. I had to be assessed by the dvla following treatment (having said that I think if treatment is only to one eye they are much more relaxed? but I stand to be corrected!) Unless your consultant advises you otherwise then you are usually able to continue to drive whilst they carry out their investigations which is just as well as they are not speedy! Obviously use your common sense! I am now under a new consultant (sadly my original one retired) she is equally informative and told me that these days laser treatment is done very carefully not to impair peripheral vision too much!
I have managed to retain a lot of my peripheral vision but as flowerpot has said I also find my night vision has been effected the most and occasionally see the 'ring' of laser treatment if tired or in bright light.
As for the lucentis...I was petrified of this!!! And actually became pretty anxious for most of last year when my treatment started!! I have had 10 to date and am booked in for another 3 to date. The first one is by far the worst, just simply as you have usually worked yourself up into such a state of the unknown I think your body is almost in shock!! It is not that bad!
I actually get a deterioration in my sight when the lucentis has worn off and three days before Christmas last year I found myself ringing up the eye clinic to ask is I could have another jab as my eye had 'gone down', when I attended the clinic for said jab I said to the person doing the jab "If someone had said six months ago, I would be ringing up and asking for one I would never have believed them!" The most uncomfortable thing about the whole process is mainly the 'prep' they do beforehand rather than the injection so be prepared! Lots of drops (which is good!) Iodine wash, a cloth over the face etc etc, By the time they have done all that the jab isn't so bad! A little bit tender for a few days after, but actually the more you have the more get used to the feeling! After my first I slept on and off most of the next day since then I won't let it get me down and try and continue my life fairly normally, although I don't drive the following day.
I know this is a somewhat long post but I read loads on here and the macular society forums about lucentis and it helped enormously!
I don't doubt I would be partially sighted if not blind by now without these treatments, and YES I am still driving!!!
Good luck and I would love to hear how you get on!
 
This link was invaluable when I needed good sound information! Thanks!
 
VixyA86 said:
Thanks petdell
How bad is the peripheral loss? Did lucentis improve your vision?
Click to expand...
The peripheral loss has not really improved in my right eye. This deteriorated quickly and was I feel caused by avastin injections, which is a steroid and can lead to raised pressure in the eye and glaucoma , which I now have. But having said that it remained stable for the last five years. The Lucent which I have in both eyes lasts around six weeks,there is usually improvement within days which gives a sharper and more defined vision. This gives me the ability to meet DVLA standards to drive. I know that without them especially in the left eye, I would lose my licence. This happened about 3 years ago ,when I went 3 months without them.
I am seeing my consultant next week and am holding, she may change the Lucent is, and try eylea another drug but not yet licenced, which may last longer. I am just unlucky that the fluid keeps building. Other patients have two or three jabs , and it lasts a year. Whilst I was frightened by the initial dip in vision, putting it perspective, my father was totally blind my mom partially sited . Perhaps a quarter vision. My vision loss pales into insignificanc. I must add neither of them were diabetic and their sight loss was caused by neglect at birth. And in my father's case the removal of the wrong eye i.e. his good eye. Leaving him totally blind.
No NHS or ambulance chasers then. More's th pity
 
The lucentis works for me in the same way it works for you, and I can't get past six weeks either! But as you said it keeps you driving and doing the things we would otherwise not be able to do! I know what you are saying, a really good friend of mine is also having lucentis for an occlusion (she is not diabetic) and we have been good support for one another! My grandad had the same so yes it is amazing how many folk are suffering with vision loss. I'd be interested to hear how you get on with Eylea as I know that is always an option where lucentis fails.
 
Just wondered, do you attend heartlands clinic in Birmingham. And are you talking about the
prof.
 
I am so pleased to read that Lucentis is available to you and has helped you to retain your driving licences and improve clarity in your vision.

It wasn't available back in the early 1990's when my retinopathy and maculopathy were at their most aggressive and I lost most of my sight, driving licence, job etc like a pack of dominoes.

Thank goodness for the brilliant work of the eye surgeons and eye hospitals in the UK.
 
No, I am in rural North Devon! But my care has been first rate! I always insist on seeing the same consultant as others tell me different things which only confuse matters! But I am able to tell them when my sight deteriorates and after some teething problems they seem to know I am usually right and the fluid has once again built up! You know don't you? The tell tale signs...
 
I can only imagine the horror! When I first experienced the vision loss, I went about three months and the consultant I saw at the time said 'a year ago there was nothing we could do!' That stays with me! Be the time I had my first injection I had hardly any clarity in my central vision and must admit not seeing the detail in even my son's face (i.e he had no eyes! which I'm sure you can relate to) I feel very lucky and can't imagine having had no treatment for this condition, which has had amazing results (but equally I am aware it does not for everyone, so feel even more fortunate!)
How is your vision now? do you have the option of treatment to improve your vision?
 
Thanks for all your replies. I think my consultant actually wants to use the newer drug (Eylea?), for me, I couldn't remember the name but knew it was like Lucentis. I didn't realise that you needed to have the injections so often though, and am I right in thinking indefinitely?
 
Not necessarily VixyA86! Everyone is different! I have macular oedema as a result of my retinopathy and suffered an occlusion a couple of years ago! does not bode well! You are young and as you say your control is good! Something they will really go on about (for good reason) You have also not suffered significant vision loss, so this may be nipping things in the bud. They just want to stop new vessel growth and this is the best way and actually the newest way!
There was a news report on this site the other day reporting on the use of an oral drug being in the third stage of trials that does what Lucentis does, so have hope! I am not so clued up on Eylea but I do believe the principle is the same (?)
 
Really no answer.to.that. I think injection intervals vary from patient to patient.I'm now on 33 left eye 18 right. But the first 13 in the left were during trials. Have read on the forum trials are on going using light masks. Much less invasive.Have a look at Noctura light mask. Google it. Good luck
 
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