Still absolutely petrified after several laser sessions. Help.

Nods74 · Mar 17, 2018

Hi Dweller,

I’ve been a type 1 diabetic for over 38 years. Just over 10 years ago I had laser treatment on both eyes. I was originally concerned with the vague diagnosis that I received from the eye specialist at the hospital. I sort out the leading specialist in this country for diabetic retinopathy and macular degeneration, as a second opinion. Within 10 days of my initial visit he had layered both my eyes with over a dozen abnormal blood vessels on the retina. I see him every 4-6 months ever since and to date I have stable eye condition. Given how concerned you are I would seek his advice. He is called Jonathan Dowler and he practices at the London Eye Clinic at Harley Street in London. I’ve tried to include the link but this forum thinks that it’s spam. Just Google ‘Jonathan Dowler’ and he’s on the first few links.

I hope that this info helps you, genuinely I think he’s fantastic. Let me know if you’d like any more information.

sarahm723 · Mar 17, 2018

Dweller said:
I’m east of England, UK. And yes every second of every day I’m dwelling on future outcome of my eyes. Such a scary thing to go through. I’m hoping they’ll look on Monday at the haemorrhage and decide it’s healing nicely. The laser stopped most of the bleeding and there’s only a slight blur to my central vision but there’s still a dark black bouncing blob hanging there that rugs in every direction I look. Definitely going to ask what’s the risk of it opening again as they weren’t clear last time. Just said the abnormal vessel shrinked and tugged on the vitreous jelly causing the haemorrhage, so they sealed it. But isn’t it just going to tug again if it’s still in the vitreous? :/

Mark cahill is lead in this industry across Europe and worked in diabetes center in America specializing in diabetic eye diseases .. he’s based in Dublin though. Continued laser more and more can lead to things getting worse so Iv been told... yes the jelly pulling on the retina is not good... they waited to see would mine stop pulling and bleeding but it wouldn’t do they acted on it with the vitrectomy then re lasered through clear jelly because the laser can not work an get in at the vessels properly through the blood in the vitreous hence vitrectomy and lasering in the same op.... the risks of course are terrifying but they told me I was at worse risks if I didn’t have the vitrectomy and allowed the retina to continue to be pulled on and then I’d eventually be in a disaster down the line .. I’m trusting in god that soon I’ll be stable and that these bleeds will stop... laser doesn’t work for a few months after it’s done

Dweller · Mar 17, 2018

Nods74 said:
Hi Dweller,

I’ve been a type 1 diabetic for over 38 years. Just over 10 years ago I had laser treatment on both eyes. I was originally concerned with the vague diagnosis that I received from the eye specialist at the hospital. I sort out the leading specialist in this country for diabetic retinopathy and macular degeneration, as a second opinion. Within 10 days of my initial visit he had layered both my eyes with over a dozen abnormal blood vessels on the retina. I see him every 4-6 months ever since and to date I have stable eye condition. Given how concerned you are I would seek his advice. He is called Jonathan Dowler and he practices at the London Eye Clinic at Harley Street in London. I’ve tried to include the link but this forum thinks that it’s spam. Just Google ‘Jonathan Dowler’ and he’s on the first few links.

I hope that this info helps you, genuinely I think he’s fantastic. Let me know if you’d like any more information.

Hi Nods,
He sounds wonderful. Yes please. I’d love more information. I just googled him and got his email address about to email his secretary about costs and availability for treatment. I’m guessing he’s not going to be part of the NHS? I was a carer before all this but with my current predicament it has led to.. I don’t know what my future holds. I’d like the best possible chance at saving my vision.

Dweller · Mar 17, 2018

sarahm723 said:
Mark cahill is lead in this industry across Europe and worked in diabetes center in America specializing in diabetic eye diseases .. he’s based in Dublin though. Continued laser more and more can lead to things getting worse so Iv been told... yes the jelly pulling on the retina is not good... they waited to see would mine stop pulling and bleeding but it wouldn’t do they acted on it with the vitrectomy then re lasered through clear jelly because the laser can not work an get in at the vessels properly through the blood in the vitreous hence vitrectomy and lasering in the same op.... the risks of course are terrifying but they told me I was at worse risks if I didn’t have the vitrectomy and allowed the retina to continue to be pulled on and then I’d eventually be in a disaster down the line .. I’m trusting in god that soon I’ll be stable and that these bleeds will stop... laser doesn’t work for a few months after it’s done

That’s what I’m dreading. It’s one of my questions for Monday as to why they lasered the haemorrhage if it’s just going to keep tugging and reopening up. Surely they need to laser it near the base where the abnormal grown vessel pulling in the jelly can just fall away/wither? I’ve heard so many Vitrectomy stories that have not improved vision or fixed the problem that it’s making me want to suggest anti-VEGF instead. There’s hope for us that they will stop at some point in the future 1-2 years, it’s just getting to that point and hoping it’ll be with the minimal loss to vision. Hope your recovery and stabilisation happens very soon too x

sarahm723 · Mar 17, 2018

Dweller said:
That’s what I’m dreading. It’s one of my questions for Monday as to why they lasered the haemorrhage if it’s just going to keep tugging and reopening up. Surely they need to laser it near the base where the abnormal grown vessel pulling in the jelly can just fall away/wither? I’ve heard so many Vitrectomy stories that have not improved vision or fixed the problem that it’s making me want to suggest anti-VEGF instead. There’s hope for us that they will stop at some point in the future 1-2 years, it’s just getting to that point and hoping it’ll be with the minimal loss to vision. Hope your recovery and stabilisation happens very soon too x

I asked the same about the injections I was told at this stage it would not help it would only make everything worse ... I may need injection down the line for the fluid but was told the injections are for when bleeds are gone for a few months and have stopped.. you can not have the injection when the bleeds are active

Dweller · Mar 17, 2018

sarahm723 said:
I asked the same about the injections I was told at this stage it would not help it would only make everything worse ... I may need injection down the line for the fluid but was told the injections are for when bleeds are gone for a few months and have stopped.. you can not have the injection when the bleeds are active

Ah.. nuts. It really sucks that they treated my lazy left eye with laser and the Lucentis injections for the macular edema and it has no problems now but they’ve bashed up my dependant right eye with countless laser sessions and causing multiple bleeds.

sarahm723 · Mar 17, 2018

Dweller said:
Ah.. nuts. It really sucks that they treated my lazy left eye with laser and the Lucentis injections for the macular edema and it has no problems now but they’ve bashed up my dependant right eye with countless laser sessions and causing multiple bleeds.

Ya too much laser is not the answer ... invest in who you go to research research research ... sometimes your just another patient just another number you really need to at least have it that your in the best possible hands that you could be in ... I wish you all the best .. keep in touch

Dweller · Mar 17, 2018

Do you think I can demand my hospital ophthalmologist to refer onto Moorfields clinic. I think they’d just laugh at me and try to reassure me but the state of my eye after so much just makes me want to burst into tears. I literally feel like they have no idea what it’s like. All they see is their screens.

Nods74 · Mar 18, 2018

Dweller said:
Hi Nods,
He sounds wonderful. Yes please. I’d love more information. I just googled him and got his email address about to email his secretary about costs and availability for treatment. I’m guessing he’s not going to be part of the NHS? I was a carer before all this but with my current predicament it has led to.. I don’t know what my future holds. I’d like the best possible chance at saving my vision.

Hi Dweller,

Jonathan Dowler used to practice on the NHS at Moorfields. He retired from the NHS in 2012. I’ve only seen him privately. I know it is potentially expensive but there again you are trying to save your eye sight. I would have thought that you’d be looking at around £200 for an initial consultation. If nothing else I would see him for a second opinion at least you will then have a better idea of specific treatment options to talk to your doctor about afterwards. We did something similar with my sister-in-law and her cancer treatment. Knowing Jonathan he would recommend a NHS doctor for you if you didn’t want to continue seeing him privately.

Dweller · Mar 18, 2018

Nods74 said:
Hi Dweller,

Jonathan Dowler used to practice on the NHS at Moorfields. He retired from the NHS in 2012. I’ve only seen him privately. I know it is potentially expensive but there again you are trying to save your eye sight. I would have thought that you’d be looking at around £200 for an initial consultation. If nothing else I would see him for a second opinion at least you will then have a better idea of specific treatment options to talk to your doctor about afterwards. We did something similar with my sister-in-law and her cancer treatment. Knowing Jonathan he would recommend a NHS doctor for you if you didn’t want to continue seeing him privately.

Thanks Nods,
I’ve emailed the London clinic all my details, condition and mental state and just waiting to hear back about a self-pay price. Hoping it’s not going to be too expensive and yes might do like you said and just pay out for an initial consultation to get his opinion and what route to take after. I feel completely alone through this and rely solely on forums and people who have gone through it too. My family doesn’t understand the extent of what is happening and just keep saying it’s going to be alright whilst at the same time not really looking into anything about it, I have no available contact with my diabetes team other than an arranged HBA1C appointment every 6 months, RNIB couldn’t really assure me as it’s a current medical condition and my eye clinic I’m not very trustworthy of right now with everything that has happened thus far with my eyes.

sarahm723 · Mar 18, 2018

Dweller said:
Thanks Nods,
I’ve emailed the London clinic all my details, condition and mental state and just waiting to hear back about a self-pay price. Hoping it’s not going to be too expensive and yes might do like you said and just pay out for an initial consultation to get his opinion and what route to take after. I feel completely alone through this and rely solely on forums and people who have gone through it too. My family doesn’t understand the extent of what is happening and just keep saying it’s going to be alright whilst at the same time not really looking into anything about it, I have no available contact with my diabetes team other than an arranged HBA1C appointment every 6 months, RNIB couldn’t really assure me as it’s a current medical condition and my eye clinic I’m not very trustworthy of right now with everything that has happened thus far with my eyes.

Invest in yourself it’s worth every cent to know they doing the right thing .. peace of mind is priceless

Dweller · Mar 18, 2018

I’ve no savings at all. I’m going to have to crowdfund or get a loan somehow for all this. :s

Dark Horse · Mar 18, 2018

This site has some useful information:-

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

Laser treatment
http://www.diabeticretinopathy.org.uk/laserdiabetic_retinopathy.html

Laser treatment ...for professionals
http://www.diabeticretinopathy.org.uk/laserdiabeticretinopathyprof.html

Anti-VEGF
http://www.diabeticretinopathy.org.uk/lucentispatientsdr.htm

Vitrectomy
http://www.diabeticretinopathy.org.uk/vitreous_hemorrhage.html

The NHS requires 'informed consent' for treatments. If you don't feel you understand why a treatment is being offered, ask for further explanation. If you feel your team are not giving you the correct treatment, you could try asking for a second opinion although you have to balance that against delays to treatment:- https://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68

Grant_Vicat · Mar 18, 2018

lefeilouss said:
I understand how you feel but I think if I hadnt got my vitrectomy and all nw i think if would have gotten worst by now.

Like they always say the earlier u detect and get it treated the better.

I remember seein a few members here who had various vitrectomy years back and lasers and they did mention if its not for the they could have now lost their eyesight in the long run

Yup, I'm one of them! Primitive treatment with very early laser from 1979-1983. The glasses round my neck are reading glasses and that's all I need!

Grant_Vicat · Mar 18, 2018

Dweller said:
But doesn’t Vitrectomy permanently affect your vision? Like poorer long distance and central vision more blurred? I’m scared to lose my Dvla license among all this as only just renewed it the month before all this diagnosis and happenings.

Hi @Dweller see my response to @lefeilouss above. I do have retinal scarring, but it didn't stop me winning at snooker tonight. I hope you have the success I have had with this. It is hugely scary in the early stages. All the best.

Grant_Vicat · Mar 18, 2018

sarahm723 said:
I feel like I wrote this myself.. I’m 28.. getting laser since may 2017, 2 weeks after I had a bleed.. which hasn’t stopped dripping blood had more laser still contained.. so now 3 weeks ago I had a vitrectomy I’m still bleeding... well I started bleeding 3 days after the vitrectomy ..I’m scared every day and pray so much for the knightmare to end .... tight control is worse for the eyes... it’s hard to know what to think .... I not sure what to say only I know how you feel

I wish you the very best of luck (I was lasered in both eyes 1979-1983)

Dweller · Mar 19, 2018

But is it unusual for me to have had so much laser already? From posts I’ve read most people have only had under 5 sessions and it’s been finely treated and effective at stopping the retinopathy progression. Do I need to fight this for another year before stabilisation has a chance to work? I read somewhere it takes 1-3 years to become stable.

Alisondawn · Apr 7, 2018

Dweller said:
Hi,
This is my first post on here. My name is Anneka and I’m 28 years old. I’ve had type 1 diabetes for 21 years and back in August was diagnosed with background retinopathy in my left eye. I had scheduled laser a few weeks later for it and a week later my right eye suddenly filled with black dots, all leaking the very next day in which had me going to the emergency eye clinic straight away. The doctor didn’t really explain how the hell it came on so suddenly but said my eyes now had severe proliferative retinopathy. As everyone does, I googled and absolutely terrified myself into believing I’m going to go blind and during which I had cognitive behaviour therapy (which never really worked). Five months later and several laser sessions later (4 left, 7 right), I’m just recovering from another vitreous haemorrhage in my right eye and feel the retinopathy is not relenting. Though I am puzzled as to why it isn’t showing any signs of stabilising. Surely my the back of my eyes are like pincushions for oxygen now to reach it. I’ve taken control of my blood sugars gradually since October and recently my blood pressure too. Though it’s hard when every little bit of movement I do can bring on a bleed. I just need some hope please. I really don’t want to lose my peripheral vision and despite asking the doctor about injections to stop the retinopathy he simply said no it won’t work, laser is the only way. I’m very worried it’s going to keep getting worse no matter how much I’ve changed my lifestyle and eating healthily (spinach, carrots, fish etc). And to top it off I’ve come down with the norovirus recently and the pressure in my eyes when throwing up has caused multiple bleeding again everywhere. Got a Monday appointment which will probably equal more laser. I’m very deep down in a rut right now and need to see some light. Can anybody tell me if it’s going to be alright? Is laser my only option like the top consultant said?
Many thanks
Anneka

Hi
I have had lots of laser on both eyes in 2006. I was diagnosed with proliferative retinopathy and r3ceived immediate lase4 treatment over the following few weeks. For a while the retinopathy seemed to be getting worse but eventually it was brought under control. I had several bleeds in both eyes. There is something called Florid retinopathy I think where blood sugars are tightened over a short space of time. The improved oxygen supply to the eyes also ‘feeds’ the abnormal blood vessels. This is what happened with me. After several months it was brought under control. Be patient and it will be resolved eventually. Most of my retina in both eyes is now lasered.
I have however ha£ a bleed in the front of my eye a couple of weeks ago, in the space between the iris and cornea (called a hyphema). It can be linked to retinopathy but I have had several eye exams over the last couple of weeks but eye docs say they can’t see any abnormal blood vessels so the cause is currently unknown.

Your retinopathy will respond to treatment, it may take a while as mine did but you will get there. I do sympathise, I went through some tough times but things turned out o.k.

Still absolutely petrified after several laser sessions. Help.

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