There is hope after lots of laser and operations for proliferative retinopathy

[leb]

Hi all, I haven't been on here for a while but really wanted to come back and let people know how things have gone for me since developing severe proliferative retinopathy in march 2012.
I have had many thousands laser shots in each eye and ended up needing a vitrectomy operation to remove the vitreous gel in each eye. There was a time that my vision wad sooooo bad becausefof the amount of blood in my eyes that I literally could not see things other than outlines and shapes. 1 year after my last and 18months after my first vitrectomy i have just been given my 3 year licence from the dvla. Something that I thought would never happen.
I finally found an amazing consultant, after having two others that seemed to just want to laser away. It was my now consultant that said I needed the op as there was part of my retina that was being pulled thus causing the constant bleeds. I do have a partial detachment in both eyes but fortunately these are far enough in my periferol vision not to affect my driving.
I know how scary it can be when you are first diagnosed with this awful condition and I wanted to give you hope that no matter how bad things might seem there is always a chance it could be stabilised. I know im one if the very very lucky ones and not everyone will have the same outcome but there is a possibility. Sometimes a little bit of hope goes a long way
if anyone gas any questions regarding my situation I am more thsn happy to share my journey. I'm no pro im just someone who's been there.
Wishing everyone the best outcome possible. Best wishes to you all xx

 

[noblehead]

That is great news that your vision has improved and you've now got a 3 year licence, hopefully no more bleeds from now onand the outlook is more positive Leb's

I'm just in the process of renewing my licence again, forms came through on Saturday so going to send them off tonight, I suspect they'll want me to carry out a field vision test again but it's worth it to get a 3 year licence, I was at the Ophthalmology clinic only 2 weeks ago and all was well ......so fingers crossed.

 

[robert72]

leb - glad to hear that your vision has improved. I remember it sounded quite scary at the time.

 

[Kat100]

Delighted to hear your good news...x

 

[leb]

I'll kerp my fingers crossed for you noblehead ote="noblehead, post: 512361, member: 11028"]That is great news that your vision has improved and you've now got a 3 year licence, hopefully no more bleeds from now onand the outlook is more positive Leb's

I'm just in the process of renewing my licence again, forms came through on Saturday so going to send them off tonight, I suspect they'll want me to carry out a field vision test again but it's worth it to get a 3 year licence, I was at the Ophthalmology clinic only 2 weeks ago and all was well ......so fingers crossed.[/quote]
Ill

 

[MrsB]

Can I ask, what does the eye you had the vitrectomy on look like now? And how long ago did u have it done? I had one 3 months ago and my eyeball looks dreadful. I have a huge black mark that goes about 1/3 around my iris in the white part that is either:
A bruise that will fade
Scar tissue that'll be there forever
Or
Loose pigment stuff that'll fade over the next few years

Depending on which consultant I've seen so far!

Am a little disappointed about this at the moment and am hoping it will sort itself out

Claire


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[noblehead]

I had the vitrectomy operation back in 2005 Mrs B, I didn't experience a black mark in the iris but had to go back within the year to have a cataract operation, I was told at the time of the vitrectomy operation that cataracts do develop soon after the procedure. So far my eye has been fine and vision is very good and clear, have you been back to see the Ophthalmologist and mentioned the black mark, if not I would get in touch with them and have your eye examined.

 

[MrsB]

Thanks noblehead. All my ophthalmologists seem to have a different theory about what it is. Guess I'll just have to wait and see. Have had other side effects too (droopy eyelid now and enlarged pupil) which may or may not sort themselves out.

I was hoping for everyone to say " don't worry that's normal and will all fix itself" oh well I can still hope. I can at least see out of the eye again which is an improvement.

Sorry to sound like a moaning Minnie. Am not really. Kinda just comes out that way sometimes when I get on a roll Doh!!!


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[leb]

Thanks noblehead. All my ophthalmologists seem to have a different theory about what it is. Guess I'll just have to wait and see. Have had other side effects too (droopy eyelid now and enlarged cataracts doing in either eye ich may or may not sort themselves out.

I was hoping for everyone to say " don't worry that's normal and will all fix itself" oh well I can still hope. I can at least see out of the eye again which is an improvement.

Sorry to sound like a moaning Minnie. Am not really. Kinda just comes out that way sometimes when I get on a roll Doh!!!


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Hi
I didnt have a black mark either but one eye looked bloody for about 3-4 months. I too have a droopy eyelid but im pretty sure it was like that before. I had my right eye done in august 2012 and my keft eye April 13. i haven't needed the cataracts doing in either eye and hope this remains the case. Im 34 so its highly likely I'll need ut one day though.
I know whst you mean about different docs saying different things. It makes you question their ideas sometimes but I do believe everyone is different and sometimes they really just dint know.
My vusion took nearly a year to get to where it is niw with my first eye and that was always the worst of the two. My consultant did tge vitrectomy on the other one so quick he didn't give it the chance to continually bleed nor did it have as much laser.
Hoping for the bedt possible outcome for you. 3months is still fairly early days especially if you needed a gad bubble and posturing

 

[leb]

Apologies for the typos. Thats what happens when you use your phone to write more than a few words lol ="leb, post: 512712, member: 45044"]Hi
I didnt have a black mark either but one eye looked bloody for about 3-4 months. I too have a droopy eyelid but im pretty sure it was like that before. I had my right eye done in august 2012 and my keft eye April 13. i haven't needed the cataracts doing in either eye and hope this remains the case. Im 34 so its highly likely I'll need ut one day though.
I know whst you mean about different docs saying different things. It makes you question their ideas sometimes but I do believe everyone is different and sometimes they really just dint know.
My vusion took nearly a year to get to where it is niw with my first eye and that was always the worst of the two. My consultant did tge vitrectomy on the other one so quick he didn't give it the chance to continually bleed nor did it have as much laser.
Hoping for the bedt possible outcome for you. 3months is still fairly early days especially if you needed a gad bubble and posturing [/quote]
Apolog

 

[MrsB]

Oh yeah. Had a lovely bubble that lasted about 8 weeks. Had to spend 10 days on my back staring at the ceiling. Thank god for audio books. Whoever invented them is an angel


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[noblehead]

All my ophthalmologists seem to have a different theory about what it is. Guess I'll just have to wait and see. Have had other side effects too (droopy eyelid now and enlarged pupil) which may or may not sort themselves out.

I was hoping for everyone to say " don't worry that's normal and will all fix itself" oh well I can still hope. I can at least see out of the eye again which is an improvement.

Sorry to sound like a moaning Minnie. Am not really. Kinda just comes out that way sometimes when I get on a roll Doh!!!

Your not a moaning Minnie at all and I fully understand your concerns, I'm sure if the Ophthalmologists had cause for concern they would have said something by now.

Just be sure to keep your appointments and get in touch with them if things don't seem right, generally if you turn up at A & E they will bleep the on-call Ophthalmologists.

As for the gas bubble I had that done too, got waited on for 10 days which was nice for a change

 

[leb]

No definitely not a moaning Minnie at all.
I know when you have something like this you just want reassurance that it's going to be ok. Like I said my first eye took a year to sort itself out after the op so 3 months isnt so bad. As noblehead said, if you have any concerns and are not happy with what you're being told than go to a&e. We have an eye a&e dept at one of the hospitals near us and you can self refer if need be. Are you aware of a similar unit by yourself. I used this facility quite a few times after my op as I wasn't sure if what I was experiencing was normal. Each time the docs were very reassuring and always said I'd done the right thing getting it checked. I've come to learn over recent years that it's my health and body and if I'm not sure what I've been told us right I will now ask again. It took me a while to do this as I never wanted to be a pain but in the end you only have one set of eyes so I intend to get tge best treatment possible.
Let us know how you get on mrsB. When's your next appointment x

 

[Robinredbreast]

Hi all, I haven't been on here for a while but really wanted to come back and let people know how things have gone for me since developing severe proliferative retinopathy in march 2012.
I have had many thousands laser shots in each eye and ended up needing a vitrectomy operation to remove the vitreous gel in each eye. There was a time that my vision wad sooooo bad becausefof the amount of blood in my eyes that I literally could not see things other than outlines and shapes. 1 year after my last and 18months after my first vitrectomy i have just been given my 3 year licence from the dvla. Something that I thought would never happen.
I finally found an amazing consultant, after having two others that seemed to just want to laser away. It was my now consultant that said I needed the op as there was part of my retina that was being pulled thus causing the constant bleeds. I do have a partial detachment in both eyes but fortunately these are far enough in my periferol vision not to affect my driving.
I know how scary it can be when you are first diagnosed with this awful condition and I wanted to give you hope that no matter how bad things might seem there is always a chance it could be stabilised. I know im one if the very very lucky ones and not everyone will have the same outcome but there is a possibility. Sometimes a little bit of hope goes a long way
if anyone gas any questions regarding my situation I am more thsn happy to share my journey. I'm no pro im just someone who's been there.
Wishing everyone the best outcome possible. Best wishes to you all xx

Hello leb, so nice to see you posting again and with such positivity, it's wonderful news about your licence .I remember the threads with you and Ac and a few more of us with eye problems. I know there are others, myself included, who know about the lasering and the operations and it seems so daunting and scary at the time. But there is light at the end of the tunnel. Thank you for sharing your good news. Take care and don't be a stranger x

 

[Helen40]

New to this and reading this story has lifted me beyond belief, 2 vitreal hemorrhages in 1 year and this second one I'm currently experiencing all but made me give up hope, until reading this today. I'm going to push for this surgery now, thankyou and I hope your recovery continues to be good now it's 6 years on

 

[suk]

Hi Leb, I have had a haemorrhage recently and have been given laser treatment but need to go back for more. I’m really concerned that even after treatment my vision is not clear in my left eye. Will it ever improve?