Advice please.

[jennyjuniper]

Just recently I found out that I have AMD, which is a degenerative eye disease. There are two kinds, wet and dry and just to be an awkward b..... I have dry in one eye and wet in the other.
The dry type cannot be treated, although the eyesight decreases very slowly. However the hospital has offered me treatment in the 'wet' eye. This involves medication being injected into the eyeball, three times at six week intervals. There is no guarentee it will have any effect and I admit that the thought of a needle (no matter how fine) being put into my eyeball horrifies me.
What I would like to ask is if any of you know someone who has had this proceedure, or if you have had this treatment yourselves. If so, how did it go?
I have a short while before I have to let the hospital know whether I want to go ahead or not. :conf:

[Ammi]

Just recently I found out that I have AMD, which is a degenerative eye disease. There are two kinds, wet and dry and just to be an awkward b..... I have dry in one eye and wet in the other.
The dry type cannot be treated, although the eyesight decreases very slowly. However the hospital has offered me treatment in the 'wet' eye. This involves medication being injected into the eyeball, three times at six week intervals. There is no guarentee it will have any effect and I admit that the thought of a needle (no matter how fine) being put into my eyeball horrifies me.
What I would like to ask is if any of you know someone who has had this proceedure, or if you have had this treatment yourselves. If so, how did it go?
I have a short while before I have to let the hospital know whether I want to go ahead or not. :conf:

...Jenny..:hug:...all I can say Jenny is that my father in law had macular degeneration..as did his mum, it's a hereditary thing...he had injections and was able to have some (limited) vision for many years, they did slow it down quite a bit...obviously he couldn't drive and stuff like that, he was restricted in what he was able to do but he had vision....

[kirklancaster]

I am so very, very, sorry to hear this Jenny. I do not know anyone who has this or indeed knew much about it other than what I have Googled since first reading your sad post.

All I can say Jenny, is that I would undergo any procedure which MAY be beneficial love, rather than do nothing then regret that decision later on.

Please trust in these medical professionals and have this done Jenny. I understand your fear of needles in the eye, and that there are no guarantees, but you will be OK Jenny, and I'm sure that they HAVE to tell potential patients this disclaimer because there is a chance such treatment (like virtually ALL treatments) may NOT work, but I am also sure that the reality is, that there is a GREAT chance of 100% success.

It is YOUR decision love, but please think carefully about the DEFINITE consequences of NOT having this procedure done.

Go for it Jenny love - please.

In the meantime, I will pray for you.

[Northern Monkey]

I do know somebody who's had the injection in the eye and it apparently is nowhere near as bad as it sounds and is over very quickly.

[jennyjuniper]

...Jenny..:hug:...all I can say Jenny is that my father in law had macular degeneration..as did his mum, it's a hereditary thing...he had injections and was able to have some (limited) vision for many years, they did slow it down quite a bit...obviously he couldn't drive and stuff like that, he was restricted in what he was able to do but he had vision....

Thanks for your advice Ammi, always appreciated. I'll think about it some more, but I probably will have the injections. After all, limited vision is better than no vision.:wavey:

[jennyjuniper]

I am so very, very, sorry to hear this Jenny. I do not know anyone who has this or indeed knew much about it other than what I have Googled since first reading your sad post.

All I can say Jenny, is that I would undergo any procedure which MAY be beneficial love, rather than do nothing then regret that decision later on.

Please trust in these medical professionals and have this done Jenny. I understand your fear of needles in the eye, and that there are no guarantees, but you will be OK Jenny, and I'm sure that they HAVE to tell potential patients this disclaimer because there is a chance such treatment (like virtually ALL treatments) may NOT work, but I am also sure that the reality is, that there is a GREAT chance of 100% success.

It is YOUR decision love, but please think carefully about the DEFINITE consequences of NOT having this procedure done.

Go for it Jenny love - please.

In the meantime, I will pray for you.

Thanks Kirk, for all your kind words. As I've just written to Ammi, I probabkly will have it done. Better to do something than nothing after all. I suppose I was just looking for re-assurance and confirmation that I should DO something.
I'll keep you posted.:wavey:

[jennyjuniper]

I do know somebody who's had the injection in the eye and it apparently is nowhere near as bad as it sounds and is over very quickly.

Thanks for your reply. Yes, from what I've read it does seem to be over with quite quickly. Maybe I can get a hit of valium or something from my doctor before the proceedure. I did that once before when I had to fly (I'm terrified of flying) He only gave me two pills, but they were marvellous and helped a lot.

[Ammi]

Thanks for your advice Ammi, always appreciated. I'll think about it some more, but I probably will have the injections. After all, limited vision is better than no vision.:wavey:

...and you can still see colours/shapes etc, Jenny...it's like a tunnel, isn't it..?...it's sadly one of those things that can only be slowed down in it's progression and I think you'll never regret having injections to do that but you may have regrets if you don't have them..?...


...I recall one of the things (because you sometimes have to find humour in living with these things and adjusting..)...was that we separated his food on his plate so that he could define what he was eating by colour...anyways, I can't recall what he thought it was/cauliflower maybe but it was actually mustard...the really hot English stuff and he took and swallowed a whole forkful....and then watching his face when he pretended all was very normal and trying not to draw attention to it...:laugh:...

[Ammi]

...it's an excuse to treat yourself to a huge screen TV as well, Arista would approve...

[kirklancaster]

...and you can still see colours/shapes etc, Jenny...it's like a tunnel, isn't it..?...it's sadly one of those things that can only be slowed down in it's progression and I think you'll never regret having injections to do that but you may have regrets if you don't have them..?...


...I recall one of the things (because you sometimes have to find humour in living with these things and adjusting..)...was that we separated his food on his plate so that he could define what he was eating by colour...anyways, I can't recall what he thought it was/cauliflower maybe but it was actually mustard...the really hot English stuff and he took and swallowed a whole forkful....and then watching his face when he pretended all was very normal and trying not to draw attention to it...:laugh:...

:laugh: I TOLD you that you were "such a scamp" :hee:

[kirklancaster]

Thanks Kirk, for all your kind words. As I've just written to Ammi, I probabkly will have it done. Better to do something than nothing after all. I suppose I was just looking for re-assurance and confirmation that I should DO something.
I'll keep you posted.:wavey:

That's great news Jenny. Please DO keep us all posted. :flowers::kiss:

[Northern Monkey]

Thanks for your reply. Yes, from what I've read it does seem to be over with quite quickly. Maybe I can get a hit of valium or something from my doctor before the proceedure. I did that once before when I had to fly (I'm terrified of flying) He only gave me two pills, but they were marvellous and helped a lot.

Yes i think the beforehand worry is the worst part of it from what i hear.The actual injection is over before you know it.

[Cherie]

Sorry to hear that Jenny, if it were me I would go for it, my Mum had her cateracts done and you are awake for that and she said it was painless, be brave Jenny and have it done as it might be successful and you might regret it down the line if you don't. I'm sure there is someone on here who has eye injections possibly not for the same condition though.

[caprimint]

Sorry to hear this :sad: I have no experience of anything to do with this, but just thought I'd add my opinion here...if I were in your position then I would go for it. The thought of a needle in an eyeball makes me cringe too, but if there is at least a chance of having some effect then I really think it's worth going through with it.

Hope everything goes well for you with whatever you decide to do. :hug:

[jennyjuniper]

...and you can still see colours/shapes etc, Jenny...it's like a tunnel, isn't it..?...it's sadly one of those things that can only be slowed down in it's progression and I think you'll never regret having injections to do that but you may have regrets if you don't have them..?...


...I recall one of the things (because you sometimes have to find humour in living with these things and adjusting..)...was that we separated his food on his plate so that he could define what he was eating by colour...anyways, I can't recall what he thought it was/cauliflower maybe but it was actually mustard...the really hot English stuff and he took and swallowed a whole forkful....and then watching his face when he pretended all was very normal and trying not to draw attention to it...:laugh:...

He sounds like a real character Ammi. Fortunately things are not so bad for me yet. With strong glasses I can see pretty much as I always did, I've been myopic since I was a child. But reading down to your next post, I think thats a terrific idea!!:laugh:

[jennyjuniper]

Sorry to hear that Jenny, if it were me I would go for it, my Mum had her cateracts done and you are awake for that and she said it was painless, be brave Jenny and have it done as it might be successful and you might regret it down the line if you don't. I'm sure there is someone on here who has eye injections possibly not for the same condition though.

Thanks Cherie, yes you are right I'm such a coward when it comes to something like that, but when I think of all the painful proceedures that other people face every day, it sort of puts things into perspective doesn't it.

[jennyjuniper]

Sorry to hear this :sad: I have no experience of anything to do with this, but just thought I'd add my opinion here...if I were in your position then I would go for it. The thought of a needle in an eyeball makes me cringe too, but if there is at least a chance of having some effect then I really think it's worth going through with it.

Hope everything goes well for you with whatever you decide to do. :hug:

Thanks for that caprimint. I suppose I'm doing what a lot of people do when they decide to give up smoking. Tell everyone, then if I don't go through with it I will feel a bit of a wuss!:laugh:

[Ammi]

He sounds like a real character Ammi. Fortunately things are not so bad for me yet. With strong glasses I can see pretty much as I always did, I've been myopic since I was a child. But reading down to your next post, I think thats a terrific idea!!:laugh:

..just touching on what Cherie said, Jenny....BigSister/the member...has eye injections for a different thing so she would be a good person to have a chat with..

[Amy Jade]

My Grandad had eye injections for diabetes, he said it wasn't that bad and he used to say listening to my Nan nag was worse :laugh:

Sorry to hear you've got to go through this though, the thought of it doesnt bear thinking about - anything at all that helps has got to be worth a try though?

[bots]

Go for it Jenny. The thought of putting contact lenses in eyes makes many people cringe, yet millions do it every day .... we put drops in our eyes for all sorts of things, we get dust in our eyes and scratch them for all its worth. A precise little prick is nothing :hug:

[Cherie]

Thanks Cherie, yes you are right I'm such a coward when it comes to something like that, but when I think of all the painful proceedures that other people face every day, it sort of puts things into perspective doesn't it.

I'd be the same, I think the thought of something is often worse than the reality, BOTs made a good point about contact lenses I thought I would never be able to put something in my eye now it's pretty much second nature :hug:

[the truth]

Just recently I found out that I have AMD, which is a degenerative eye disease. There are two kinds, wet and dry and just to be an awkward b..... I have dry in one eye and wet in the other.
The dry type cannot be treated, although the eyesight decreases very slowly. However the hospital has offered me treatment in the 'wet' eye. This involves medication being injected into the eyeball, three times at six week intervals. There is no guarentee it will have any effect and I admit that the thought of a needle (no matter how fine) being put into my eyeball horrifies me.
What I would like to ask is if any of you know someone who has had this proceedure, or if you have had this treatment yourselves. If so, how did it go?
I have a short while before I have to let the hospital know whether I want to go ahead or not. :conf:

Im sorry to hear this jenny x
Im going to the opticians today so ill ask as much as I can about this and report back later
take care

[Niamh.]

I never heard of that condition but sorry to hear it. An injection in the eye sounds bad but presumably they would give you a local anesthetic or something? You'll have to give the treatment a go though, you don't want to lose your sight :hug:

[jaxie]

So sorry to hear about your eyes Jenny. My father had glaucoma (among many other ailments down to his diabetes) and had to have injections in his eyes. He didn't speak about it much but know he found it one of the less pleasant things he had to have done, however he said it was worth it to retain his eyesight.

I hope that whatever you decide it works out to be the best choice for you.

[Vicky.]

I would go for it, is there any risks involved for the treatment? or is it just a risk it might not work?

Sorry you are going through this. I would honestly rather chop my arm off than stick something into my eye. It took me 6 months to get used to contact lenses and I still used to have a mini panic attack when I put them in or took them out. Can't imagine what I would be like with a needle :umm2:

[Maru]

Jenny, my grandmother has wet macular degeneration in both eyes and has to have the injections regularly. I believe they are a small dose of chemotherapy. It was caught early enough in her case, as a previous doctor had missed it during examinations. She credits it for saving her eyesight and has been on them for several years now. Unfortunately, it is something she needs to have done monthly. She has each eye injected once a month for several years now. A new doctor recently tried to take her off the injections slowly, and it works for some people to come off, but in her case it didn't work.

When I was caretaking for her, occasionally she would have small blood-spot in her eye burst post-shot that would go away after a few days to a few weeks. The doctor said it was normal and harmless. Her vision occasionally had small anamolies/changes... for example lines were never straight for her, but there was a small period where in those "wavey" lines, there would be small "juts". She also has a lot of floaters.

Getting the shots themselves, she's adjusted to the routine and doesn't complain about any pain at all. Her doctors are very skilled about it and she's never had issues. One time she had a different one do the injections and they just made it more uncomfortable than normal, nothing too bad though but your experience may vary by doctor.

She has very good insurance that cover the injections, that are $700/each (last I checked) without it. That's the only real downside of the injections... they are expensive, at least here.

Oh, her doctors also have her take these vitamins regularly (they order her to take them actually)... I believe it's these exactly but can't remember if it was the one on the box that had Lutein or not.

Bausch & Lomb Preservision with Lutein Eye Vitamin & Mineral Supplement
https://www.amazon.com/Bausch-Lomb-Preservision-Supplement-50-Count/dp/B0018C8ZA6


I'm sorry you were diagnosed with this. I'm not a fan of needles myself, much less doctors. It's a whole lot easier for me to take my husband and my grandmother than myself as the nurture/caretaking gene is strong in my family, but I always feel so vulnerable in these situations even on minor visits...

Edit: Btw, the drug they inject is Avastin

[jennyjuniper]

Jenny, my grandmother has wet macular degeneration in both eyes and has to have the injections regularly. I believe they are a small dose of chemotherapy. It was caught early enough in her case, as a previous doctor had missed it during examinations. She credits it for saving her eyesight and has been on them for several years now. Unfortunately, it is something she needs to have done monthly. She has each eye injected once a month for several years now. A new doctor recently tried to take her off the injections slowly, and it works for some people to come off, but in her case it didn't work.

When I was caretaking for her, occasionally she would have small blood-spot in her eye burst post-shot that would go away after a few days to a few weeks. The doctor said it was normal and harmless. Her vision occasionally had small anamolies/changes... for example lines were never straight for her, but there was a small period where in those "wavey" lines, there would be small "juts". She also has a lot of floaters.

Getting the shots themselves, she's adjusted to the routine and doesn't complain about any pain at all. Her doctors are very skilled about it and she's never had issues. One time she had a different one do the injections and they just made it more uncomfortable than normal, nothing too bad though but your experience may vary by doctor.

She has very good insurance that cover the injections, that are $700/each (last I checked) without it. That's the only real downside of the injections... they are expensive, at least here.

Oh, her doctors also have her take these vitamins regularly (they order her to take them actually)... I believe it's these exactly but can't remember if it was the one on the box that had Lutein or not.

Bausch & Lomb Preservision with Lutein Eye Vitamin & Mineral Supplement
https://www.amazon.com/Bausch-Lomb-Preservision-Supplement-50-Count/dp/B0018C8ZA6


I'm sorry you were diagnosed with this. I'm not a fan of needles myself, much less doctors. It's a whole lot easier for me to take my husband and my grandmother than myself as the nurture/caretaking gene is strong in my family, but I always feel so vulnerable in these situations even on minor visits...

Edit: Btw, the drug they inject is Avastin

Thanks for the information Maru. The doctor I saw said I would have a series of 3 injections (free I'm glad to say) then be tested to see if those three had improved anything.
There are also vitamins to take (six times the reccommended dose) Synvital, Cezin or Ophtamin 20.
I've made an appointment and am quite willing to have those three injections, but the thought of having them every month is a bit off putting.
Anyway thanks again.:wavey:

[jennyjuniper]

Go for it Jenny. The thought of putting contact lenses in eyes makes many people cringe, yet millions do it every day .... we put drops in our eyes for all sorts of things, we get dust in our eyes and scratch them for all its worth. A precise little prick is nothing :hug:

That is sp true.:wavey:

[Maru]

Thanks for the information Maru. The doctor I saw said I would have a series of 3 injections (free I'm glad to say) then be tested to see if those three had improved anything.
There are also vitamins to take (six times the reccommended dose) Synvital, Cezin or Ophtamin 20.
I've made an appointment and am quite willing to have those three injections, but the thought of having them every month is a bit off putting.
Anyway thanks again.:wavey:

The injections aren't really that bad as they numb your eye with drops before you have them. You'd think anyone would not look forward to it or be reluctant to go, but my grandmother really doesn't seem to be too stressed by the visits at all. Sitting in the waiting room and checking her in to see the doctor and getting her information in the computer takes the longest. It takes them almost no time to do the injections. The staff has always made the experience pleasant so I think getting a good doctor you trust to do the injections really helps.

I for one don't like needles either, so I commend you on your bravery. :clap1: Personally, after seeing her get the injections, it feels like that having the eye injections would be easier than getting blood drawn. I always end up with that one special person who takes forever to find a vein and gives me a bruise (same with IV's). Her doctor makes the eye injections look so effortless.

I'm not sure what is in the eye vitamins that she is prescribed. Another option is to add more dark green vegetables to your diet (such as spinach, kale, etc). However, if your diet is restricted and you are limited on how much Vitamin K you can have (i.e. on blood thinners for blood clots), then probably taking the supplements would be easier. The one I linked she pays about $20-25/mo in the US (w/wo coupon)

Make sure your blood pressure is under control (especially not high) and check it daily as that can have a significant impact over time as well. My grandmother had BP that was trending up and that was around the time she was seeing more floaters/distortions... We found out at an unrelated visit to the ER soon after that that she had atrial fibrillation that took them a little while to get confirmed because she wasn't showing up on EKG during the visits (but it shows up every time now after they confirmed it on the 24hr home EKG). Her BP spikes and drops quite often, so that could've played a role as well.

[jennyjuniper]

So sorry to hear about your eyes Jenny. My father had glaucoma (among many other ailments down to his diabetes) and had to have injections in his eyes. He didn't speak about it much but know he found it one of the less pleasant things he had to have done, however he said it was worth it to retain his eyesight.

I hope that whatever you decide it works out to be the best choice for you.

Thanks Jaxie.:wavey:

[Ammi]

..I remembered also Jenny with my father in law when he was diagnosed in his deteriorating eyesight...?..he found the Royal National Institute of the Blind really so helpful in the aids that were suggested to him.../so much talking stuff that isn't reliant on vision..he had a very cool talking watch with a very sexy voice coming from it...he seemed to press the time button rather a lot if I recall correctly...anyways maybe contact them as well, they're really helpful...

[jennyjuniper]

..I remembered also Jenny with my father in law when he was diagnosed in his deteriorating eyesight...?..he found the Royal National Institute of the Blind really so helpful in the aids that were suggested to him.../so much talking stuff that isn't reliant on vision..he had a very cool talking watch with a very sexy voice coming from it...he seemed to press the time button rather a lot if I recall correctly...anyways maybe contact them as well, they're really helpful...

Thanks Ammi, the watch sounds amazing, especially if I could get one with Alan Rickmans voice on it, or Tom Conti's:laugh:
The kommune here is very good at supplying aids to help people with various ailments, although at present my regular strong specs are doing the trick, but it's good to know that help is available when needed.

[bots]

Thanks Ammi, the watch sounds amazing, especially if I could get one with Alan Rickmans voice on it, or Tom Conti's:laugh:
The kommune here is very good at supplying aids to help people with various ailments, although at present my regular strong specs are doing the trick, but it's good to know that help is available when needed.

one of the watch faces on the apple watch, a Mickey mouse one, speaks the time when you tap it :laugh: