Myopic Degeneration: Hi all, I'm new here... - Macular Society

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Myopic Degeneration

MyopiaGuy profile image
7 Replies

Hi all,

I'm new here and I'm anxious. I was sent to a retina specialist today and diagnosed with myopic degeneration. I've always had very poor vision (-15 ex in contacts) and extreme nearsightedness. I received my first eye injection today and nearly passed out from the anxiety. It was painful but quote u pleasant to feel the pressure and probe. I'm already anxious about my next injection next month.

My questions are about the diagnoses though. Is it controlled by the injections or do they just slow the progression down? Will I eventually be legally blind even with corrective lenses (I am already defined that without the lenses in). The doctor wasnt helpful. It seemed rushed and like a factory. I'm fearful. If this isn't the correct forum I apologize and can post elsewhere if directed.

Thanks in advance. My nerves are shot today.

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MyopiaGuy
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7 Replies

Sending you a hug XSomeone else will know more about your condition but generally to say everyone is different and the inj do work at holding deterioration at bay but you may need them long term.

You should have a review with your eye doc after the 3 loading dose inj. This will be the time to ask Qs and get As. Write a list and record the answers as it's hard to recall later. Have a look at the pinned posts " Useful Stuff" - one is about things to ask.

I wanted to reply re painful inj as you mention pressure. Inj should not be painful though many do struggle getting anaesthetic right. And the injector can make a big difference. There shouldn't be pressure though - I had this my 1st inj and it was traumatic. My doc said the injector had pressed down on eye clamp too much. I made sure to tell them next time how bad it had been, about not pressing etc, wanting lots of anaesthetic, how nervous I was and they were very careful ( different person!). Didn't have it so bad ever again. So do mention your bad experience next time you go and best of luck going forwards xx I always hold nurses hand!

Be kind to yourself, sight problems are known to be akin to bereavement emotionally. The macular society helpline is very good and gives info and supportive counselling.sorry haven't got no. handy but google it.

Everyone here " gets it" and it's a great forum so you're in the right place!

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear MyopiaGuy,

As has already been suggested, it is important that you direct your medical questions to your ophthalmologist, so that they can address them with reference to your eyes in particular.

I have copied a link to information on our website regarding myopic related macular conditions:

macularsociety.org/macular-...

In addition, this link may be of interest:

macularsociety.org/support/...

We did hold a virtual clinic on myopic macular degeneration yesterday evening. The speaker was Pete Coffey from University College London (UCL). This will be available to view shortly on YouTube:

bing.com/videos/search?q=yo...

We do have a free telephone counselling service in case this may be of help at present. There is a self- referral form on our website page:

macularsociety.org/support/... This is a link to our Emotional impact booklet: macular-2020071509040861370...

We do also have other support services:

macularsociety.org/support/

Please do not hesitate to contact us if you would like to discuss any concerns further. The Macular Society Advice and Information Service is open 9am – 5pm Monday to Friday on 0300 3030 111 (we are closed on Bank holiday Monday).

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

Rosalyn

Shimano profile image
Shimano

Dear myopia guy. You could t find a more understanding or sympathetic place than this forum where we are all different but the same in our anxieties and feArs for the future. Your comment on nearly passing out from anxiety regarding future injections is a real reflection of what mNy of us feel. So no apologies necessary. Just a big welcome to this space. CAnt answer your question as to outcomes as it seems to be very individual but back up eyesright suggestions re being outspoken re rushed or careless treatment though I know it can be very hard to do when you feel so vulnerable. I think if you trawl this site you will find you are not alone in suffering very painful jags though literature says it should be painless. also recommend rather counselling service of the macular society. It really helped me when I was panic stricken and newly diagnosed. Sending you big support on the airwaves to get the best you can from the system. If you can’t find a consultant who listens ask for another one. All the very best to you. Chin up.

Ozartist profile image
Ozartist

My eyesight has improved and stabilised after quite a number of injections. I have the myopia macular type. I’ve ceased to need Eyelea injections for the time being (knock on wood). Good luck!

Penelopeflower profile image
Penelopeflower

Hello, I have been having injections in one eye for over a year now, and it does get a little easier overtime, I do think the thoughts of it are usually more stressful than the actual procedure, once you have your review your doctor will be able to answer your questions and i am sure you will find that reassuring, this forum of course is full of lovely people who have a shared experience, and that of course will be beneficial to you. Good luck with everything, look forward to hearing how you get on. Best wishes.

Kath70 profile image
Kath70

Hi thereI have MM too (-19 in both eyes) and was diagnosed in 2017. After the 3 loading injections (in both eyes at the same session) I've only had an additional one injection per eye - the treatment seems to work for me, so far. So, I agree it is not that pleasant but it is over very quickly. I tend to take the approach of very much not thinking about it beforehand and listening exceptionally hard to the radio when I've had mine.

We're lucky in that there is a treatment too. It is quite a drama to find out and cope with this. Like others have already said, this site is super helpful as are the team at the macular society.

Take care and I hope the next one is better 🤞

Hi there I have MM too and had a short series of injections that I used to get sorely anxious about. My eyes have stabilised again following them. I always tried to talk to the injection team so that they could hear (shakes in voice) they had a nervous one on their hands. And I always had a chocolate treat immediately afterwards - my go to was a crunchie, warming in the pocket but lets face it, the diagnosis, the process etc is very concerning anything that softens the path is good. You are not on your own. Catch the recent talk that the macular society hosted with Pete Coffrey it offered a sense of hope for the future and a glimpse at the rate of progress within the scientific world looking to this condition. The fear you feel now is probably the highest it will be, I remember feeling terrified of the future and walked in a total state of panic for days. However weeks will turn to months and to years and you will adapt, we do. One day you will post on here reassuring someone else. But for now, take good care and be especially kind to yourself.

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