Proliferative retinopathy

[saruhbeau]

I found out two weeks ago I have this.

I was away camping and receive an email saying an urgent appointment had been made for laser treatment from the retinopathy screening I had been to.

I went to the urgent appointment, terrified I should add... the Dr spoke very poor English but from what I understood he hadn't received the referral so couldn't see the damage. So he did a flurescin angiogram (injecting dye in a vein then taking pictures behind the eye).

Apart from making me extremely ill and vomiting non stop for the next 36hrs, the angiogram showed I have l3, proliferative retinopathy.

He said I need treatment but it is due to bad circulation? Not due to something else so laser might not be appropriate?? What does that mean?

He told me I need to be free the next couple of weeks for the treatments. But I received a n appointment in the post and it isn't for over 2 months.

This worries me when the treatment is needed urgently?

Any body been through similar? What is the prognosis and treatment? I am very worried and not impressed with the Dr who didn't even know my name.

 

[tim2000s]

Hi @saruhbeau - I'm tagging both @noblehead and @himtoo who have experience with retinopathy and treatment.

 

[saruhbeau]

Thanks @tim2000s ☺

 

[noblehead]

Apart from making me extremely ill and vomiting non stop for the next 36hrs, the angiogram showed I have l3, proliferative retinopathy.

Do you mean R3 rather than I3 ?

The following explains the grading used in Diabetic Retinopathy, if you navigate around the site you will find some useful information & advice on PR and the treatment involved:

http://www.diabeticretinopathy.org.uk/gradingretinopathy.htm

Any body been through similar? What is the prognosis and treatment? I am very worried and not impressed with the Dr who didn't even know my name.

The Ophthalmologist will explain to you what treatment will be involved in your care when you attend the Ophthalmology appointment, try not to worry but do be sure to attend as it's very important to do so. Good luck.

Edit to add more info on Proliferative Retinopathy:

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

 

[saruhbeau]

Thanks @noblehead yes r3 not l3. The info you posted is very helpful. I remember him saying I don't have any fibrosis but it is r3.

It would be good to know what treatment is usual for r3 retinopathy without fibrosis or retinal detachment. I know the nhs is in a crisis but I am just concerned I was told it was urgent I had treatment, yet my appointment isn't for 2 months. The consultant said in the next two weeks not two months. I know generally appointments can be as long as 12 months away and I'm not ungrateful but I am so worried about my sight. I also had borderline ocular hypertension and I am getting quite severe pain in my right eye.

 

[noblehead]

Hi again @saruhbeau

If Laser treatment was mentioned in the letter then that what will be discussed at your upcoming appointment, but whilst there don't be afraid to ask any questions about the treatment and what it may entail, I've had laser treatment for PR and although it's not pleasant it isn't to be feared, rest assured they'll only laser your eyes if they think it's absolutely necessary.

 

[Dark Horse]

I suggest:-

• phoning the hospital eye department to explain that the doctor told you 2 weeks not 2 months and ask them to check that the appointment date is correct (someone could have made an error by writing 2 months instead of 2 weeks)
• visit/phone your GP to ask them to explain what the hospital found - they should have a results letter with a fairly detailed explanation

One thing that diabetic eye screening looks for is 'new vessels' which are graded R3 and patients with this are referred to the hospital within 2 weeks. The new vessels grow because glucose has damaged the retina so it is not getting enough nutrients and the retina 'tries' to compensate for this by growing new vessels. Unfortunately, the vessels are poor quality and cause problems but they can be treated by lasering the retina. There is information about proliferative diabetic retinopathy here:- http://www.diabeticretinopathy.org.uk/proliferative.html

Another possible cause of new vessels is a 'vein occlusion'. In this case a retinal vein gets blocked, the retina doesn't receive enough nutrition and, again, it tries to grow new vessels. Again, these may be treated with retinal laser. In this case, as the new vessels are not due to diabetes, they are not graded R3. From your description, I don't know whether you had a vein occlusion, but here is some information about vein occlusions, in case:- https://patient.info/health/retinal-vein-occlusion

 

[steve_p6]

If you do end up getting laser take some paracetamol beforehand. Its not terribly painful but a laser flashing in your eye does bring on a headache after a while!

 

[saruhbeau]

Thank you @noblehead that is reassuring to hear.

And I will follow your advice @steve_p6, thanks!

@Dark Horse that is very helpful! Thanks for explaining I love your username by the way - not sure if you are a horsey person but I have a horse and ride.

Sarah.x