Blind and Visually Impaired Community
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Low vision - Macular degeneration (self.Blind)
submitted by LiRibeiro
Hello everyone.
I have low vision due to glaucoma and macular degeneration. In the last 2 years it has been difficult to maintain my vision and my eyes are more tired than ever.
Due to macular degeneration, I get Eylea injections at the hospital. In the past 11 years, this is the only thing that they do (I am 29yo). There is no frequency in the injections. The doctors look at the OCT exam, but sometimes they cannot see any changes, however due to my eye complaining, they decide to move forward with the injections.
In the past 3/4 months I got 3 injections in the same eye. The last one was terrible… I got a bad hospital bacterial infection in that eye. I had to receive several intravitreal antibiotic injections and had two surgeries (one of was vitrectomy).
If there is anyone with a similar situation - macular generation and Eylea injections - how long have you been doing these injections? Are they making your sight better? How do you feel?
I am afraid to do these injections once again. The infection was horrible, and I know that my retina is full of scars.
Thank you.
I have low vision due to glaucoma and macular degeneration. In the last 2 years it has been difficult to maintain my vision and my eyes are more tired than ever.
Due to macular degeneration, I get Eylea injections at the hospital. In the past 11 years, this is the only thing that they do (I am 29yo). There is no frequency in the injections. The doctors look at the OCT exam, but sometimes they cannot see any changes, however due to my eye complaining, they decide to move forward with the injections.
In the past 3/4 months I got 3 injections in the same eye. The last one was terrible… I got a bad hospital bacterial infection in that eye. I had to receive several intravitreal antibiotic injections and had two surgeries (one of was vitrectomy).
If there is anyone with a similar situation - macular generation and Eylea injections - how long have you been doing these injections? Are they making your sight better? How do you feel?
I am afraid to do these injections once again. The infection was horrible, and I know that my retina is full of scars.
Thank you.
jaduwe 3 points 1y ago
Hi, I hope you can get some relief soon. As far as community goes this site is a great support. There are younger people diagnosed with MD.
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LiRibeiro [OP] 2 points 1y ago
Thank you. I didn’t know this community. I will check. Thank you for your support!
TacomaWA 3 points 1y ago
I would look into your diagnosis because macular degeneration is a disease for much older people. Most people your age suffering from such symptoms have some form of macular dystrophy, which is a genetic disorder. Check with your doctor.
Best to you…
Best to you…
Iamheno 6 points 1y ago
Stargardt’s Disease is sometimes referred to as Juvenile Macular Degeneration.
TacomaWA 2 points 1y ago
Thank you! I did not know that.
Iamheno 2 points 1y ago
So many names…one thing.
Stargardt Macular Dystrophy.
Juvenile Onset Macular Degeneration.
Fundus Flavimaculatus
Stargardt Macular Dystrophy.
Juvenile Onset Macular Degeneration.
Fundus Flavimaculatus
LiRibeiro [OP] 1 points 1y ago
Thank you all for replying. I really like the support of this community!
I didn’t know all those diseases. Do you know the prognosis?
Next month I will do a genetic test. I am a bit anxious. These diseases are a rollercoaster in my life…
I didn’t know all those diseases. Do you know the prognosis?
Next month I will do a genetic test. I am a bit anxious. These diseases are a rollercoaster in my life…
[deleted] 1 points 1y ago
[deleted]
KillerLag 5 points 1y ago
I was originally under the impression that macular degeneration was specific for older people (the official name being Age Related Macular Degeneration). But I found out two weeks ago that there are other possible causes of macular degeneration (a client of mine in her mid-20s has it). It is much more rare than ARMD but possible.
TacomaWA 5 points 1y ago
Yes, macular dystrophy presents almost exactly like macular degeneration, but is a different disease. Most likely, that is what you might be running into.
There are two common types: Best Disease and Vitelliform Adult Onset Macular Dystrophy. Again, these diseases present almost exactly like macular degeneration, but occur In much younger people.
All my very best…
There are two common types: Best Disease and Vitelliform Adult Onset Macular Dystrophy. Again, these diseases present almost exactly like macular degeneration, but occur In much younger people.
All my very best…
hermosafunshine 2 points 1y ago
I am 61 now but have had macular degeneration since my 40’s. Nonetheless, I get eyelea for the progression to wet Mac degen and have never had an infection. That being said, my doctor and staff are extremely careful when they set me up for the shot. I would imagine the infection came as a result of either contamination from the injection set up or perhaps you got something in your eye (rubbed it, gardening, swimming etc) and contaminated it shortly after the injection when your eye is most vulnerable to bacteria entering thru the injection site.
The only reason I get Eyelea Is for the wet macular problems. Other than that I can’t imagine why else to get them. Unfortunately, glaucoma can be a side affect of the eyelea (anti-vegf injections). So I’ve got that too, which causes problems, as you can imagine, treating the wet m.d. I would strongly recommend a retina specialist AND a glaucoma specialist. At the very least I’d get a 2nd opinion from a reputable ophthalmologist.
As to your other questions, the eyelea has worked, but coupling with the glaucoma has created frequency of dosing problems. (I’m probably getting less than would be typical). That concerns me.
Sincerely I hope things get easier for you. Hang in there.
The only reason I get Eyelea Is for the wet macular problems. Other than that I can’t imagine why else to get them. Unfortunately, glaucoma can be a side affect of the eyelea (anti-vegf injections). So I’ve got that too, which causes problems, as you can imagine, treating the wet m.d. I would strongly recommend a retina specialist AND a glaucoma specialist. At the very least I’d get a 2nd opinion from a reputable ophthalmologist.
As to your other questions, the eyelea has worked, but coupling with the glaucoma has created frequency of dosing problems. (I’m probably getting less than would be typical). That concerns me.
Sincerely I hope things get easier for you. Hang in there.
LiRibeiro [OP] 1 points 1y ago
Unfortunately, the bacteria was tested and it came from the hospital. They opened a internal investigation but I don’t know the results yet.
For the past 10 years, this never happened to me. I am really careful after an injection.
Regarding the glaucoma, the doctors don’t know if I had it before the first injection 10 years ago. They only discovered it after the first injection, but the optic nerve was already very damage (both eyes).
I have two specialists (glaucoma and retina) but I will check for other opinion too.
Do you have to take an Eylea injections every month?
Thank you for the support. I hope it have been easier for you over the years.
For the past 10 years, this never happened to me. I am really careful after an injection.
Regarding the glaucoma, the doctors don’t know if I had it before the first injection 10 years ago. They only discovered it after the first injection, but the optic nerve was already very damage (both eyes).
I have two specialists (glaucoma and retina) but I will check for other opinion too.
Do you have to take an Eylea injections every month?
Thank you for the support. I hope it have been easier for you over the years.
hermosafunshine 2 points 1y ago
Thanks for the clarification. I erroneously made an assumption that you didn’t have the specialists, I guess because I haven’t heard of anyone getting their shots in the hospital before. So sorry you had to go they that and of course it would make you very wary going forward.
My doc is doing more of a “wait and see” vs a “treat and extend”. So now when I get a bleed and vision is distorted he gives me the shot and waits (vs monthly) to see how it goes. In all honesty,as much as I hate the shot (not even because of an infection like you had), I think it would help my vision to get them more frequently. It’s still early in the process but now I have 3 distortion spots peripherally that have not gone away like before. So to your question, yes they make my sight better. Were you getting them consistently for once a month for wet mac degen?
My doc is doing more of a “wait and see” vs a “treat and extend”. So now when I get a bleed and vision is distorted he gives me the shot and waits (vs monthly) to see how it goes. In all honesty,as much as I hate the shot (not even because of an infection like you had), I think it would help my vision to get them more frequently. It’s still early in the process but now I have 3 distortion spots peripherally that have not gone away like before. So to your question, yes they make my sight better. Were you getting them consistently for once a month for wet mac degen?
LiRibeiro [OP] 1 points 1y ago
>Thanks for the clarification. I erroneously made an assumption that you didn’t have the specialists, I guess because I haven’t heard of anyone getting their shots in the hospital before. So sorry you had to go they that and of course it would make you very wary going forward.
>
>My doc is doing more of a “wait and see” vs a “treat and extend”. So now when I get a bleed and vision is distorted he gives me the shot and waits (vs monthly) to see how it goes. In all honesty,as much as I hate the shot (not even because of an infection like you had), I think it would help my vision to get them more frequently. It’s still early in the process but now I have 3 distortion spots peripherally that have not gone away like before. So to your question, yes they make my sight better. Were you getting them consistently for once a month for wet mac degen?
I am from a small country named Portugal, in Europe. Here we have a national health service (public hospitals). If you work for a private or a public company, every month a slice of your paycheck goes to the state and it is used for “free” education, health, etc. (This is a very simple utopic explanation, since is difficult to have access to the national health service. There is too many people. I waited for almost a year and half and my case was marked urgent). Temporary I had paid the treatments in other clinics (private hospitals).
Now, all my treatments and exams are made in a public hospital specialized in eye care.
(Sorry if this explanation sounds confuse. I don’t know how it works in your country).
In the first years, it was not monthly but in the past months it was. And sadly, I don’t see any results.
>
>My doc is doing more of a “wait and see” vs a “treat and extend”. So now when I get a bleed and vision is distorted he gives me the shot and waits (vs monthly) to see how it goes. In all honesty,as much as I hate the shot (not even because of an infection like you had), I think it would help my vision to get them more frequently. It’s still early in the process but now I have 3 distortion spots peripherally that have not gone away like before. So to your question, yes they make my sight better. Were you getting them consistently for once a month for wet mac degen?
I am from a small country named Portugal, in Europe. Here we have a national health service (public hospitals). If you work for a private or a public company, every month a slice of your paycheck goes to the state and it is used for “free” education, health, etc. (This is a very simple utopic explanation, since is difficult to have access to the national health service. There is too many people. I waited for almost a year and half and my case was marked urgent). Temporary I had paid the treatments in other clinics (private hospitals).
Now, all my treatments and exams are made in a public hospital specialized in eye care.
(Sorry if this explanation sounds confuse. I don’t know how it works in your country).
In the first years, it was not monthly but in the past months it was. And sadly, I don’t see any results.
Lucky-Bandicoot6796 1 points 7m ago
Have you heard of IrisVision? I also read someone could see better using a VR oculus. My grandma has macular degeneration. Have you contacted eye surgeons about the surgeries available? There’s one that’s different than LASIK that I’m looking into. And of course the supplements.
LiRibeiro [OP] 1 points 7m ago
No, I haven't. I will check it.
Which kind of supplements? I am not taking any.
Which kind of supplements? I am not taking any.
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