Hey I’m -15 in my left eye and -13 in my right. My left eye bled three years ago, I got avastin injections and all was right for a year. Then it recurred a year later, more injections then I was symptom free for two years then two weeks ago I saw the familiar scotoma…off for round three of eye jabs. It was scary but almost a bit routine…
This afternoon I saw another scotoma and some wavy lines. In the right eye. My amazing surgeon literally injected it about two hours after it started.
I’m a doctor working in a very acute speciality. I don’t live in the uk but on the other side of the world. This is such a rare condition though and I feel so isolated. I feel like I’m pre-mourning my sight and the loss of my career. My VAs are still 6/5 corrected so I know I’m lucky in many ways. I was hoping my “good eye” would hold up a little longer. I’m so used to fighting and trying to be in control but I think I have to let go a little bit.
I’m calm right now but wondering if that’s shock. I’ve told two lovely friends but I would really appreciate hearing your stories good, bad and inbetween.
Written by
Mehness
To view profiles and participate in discussions please or .
Mehness, I wish you well, my friend. My experience in life has been and continues to be that things rarely if ever turn out for the worse. Our minds have a natural way of preparing for the worst outcome of any situation as a protective measure, but it seems to overcompensate the vast majority of the time. Amazing how that works. You can probably think back and remember instances when just that occurred.That being said, if I were in your shoes I'd probably be just as apprehensive as you. Try to "hang your hat on something", whatever that something is that works for you, so as to give you strength, patience, and thankfulness.
Good luck, I'll say a prayer for you tonight. I have a good feeling about your outcome.
Thanks Magicman. I think deep down I hoped I wouldn’t develop disease in the other eye and 3 years seemed a bit short…but I have been trying to count my blessings. And there are many of them. I did work today to cover for a sick colleague (a bit ironically) and all seemed to go well. I am a worrying type, and you are so right, 99% of the time things are not what I feared. And I’m going to hang onto that.
Hang tough, Brother. And I want to remind you that positive thoughts help a bunch, as do visualizations. Not easy, I know. When I get in a rough patch, I say to myself, "I wish life would just get back to normal". And then I remember that this IS normal life. Kind of a deep thought, but true. The Universe keeps on doing what it does.
Here is a big hug. It is not a short quick one but one that remains with you for a while I hope. Sometimes I go to the edge and peer into the scariness but mainly I tune in to what brings me joy and what I can still enjoy doing for my fellow humans. But that's in my period of stability. I think you sound strong and kind and focussed and every right to be be scared just now. I hope I would be able, too, if more bleeds befall me. I agree with magicman post, that nature when being kind prepares you with gradual adjustments that alter your practice. Not for good or bad but different. Travel well.
Awesome name Gill. Thank you - since I was diagnosed I have found great joy in service and community and you have reminded me this isn’t going to change. Life will not be the same, but none of us can expect that can we?
All the best to you too and thank you for the hug.
I was in my late 50s when I suddenly suffered a bleed and was eventually told it was myopic MD and at that time there was no treatment. 14 years later my right eye is still OK and I can still drive and read and use computer (with glasses).
I'm pleased you are having injections and hope they continue to hold the deterioration at bay. However I think you are right to start thinking constructively about the future. If you were in the UK I would suggest you speak to Occupational Health at your hospital, and find out about what "reasonable adjustments" could be put in place to enable you to continue to work. If not in your current specialty, then in other areas of medicine.
Most MD advice is aimed at people with age-related forms of the illness, but the UK Macular Sociery does have groups for people of working age,and there is advice on their website which will be relevant to you although you are not in the UK.
I hope you can find relevant support in the country where you live.
Thanks LL and it’s good to hear your story. I’m sorry you’ve suffered a bleed before the injections came about. I’m so lucky in many ways.
Being the slight control freak that I am I’m already making enquires about desk type jobs. Occupational health is a great suggestion. It’s not what I had planned and it’s not the secure future I thought I had mapped out, but that is life. We all have a sense of fair and unfair but although feelings may be legitimate I can see holding a sense of injustice is not going to be helpful to me at all. There are societies in my country - we are small and I know of nobody else with this diagnosis. It is so good to reach out and find people who really “get” what’s happening.
Hi Mehness, I too have Myopic CNV diagnosed in 2017 in left eye and the right eye started in 2020. I was early 50s when first diagnosed and can honestly say I felt my world had fallen apart, I work full time as an Electrical Design Engineer plus I have lots of animals to take care of and I drive a lot.
The months that followed I went through all the emotions and was lucky to find this group and the macular society as I knew very little on the condition other than what I read on the internet, which itself can be overwhelming.
I live in Scotland and I’ve been treated with Lucentis injections for both eyes which has saved my sight and luckily I’ve been treated at the onset of any deterioration on both occasions.
I am cautiously optimistic of the future but so far so good, my sight remains good , driving is not an issue. I try to be as positive as I can although there are times I get a bit down , try not to look too far ahead , live each day as it comes .
my work have been very understanding and provide me with any support required.
Take care sending thoughts and healing your way god bless 🙏
Oh Corriesboy, thank you for being so honest, showing your vulnerability to me and sharing your story. This is a club nobody wants to belong to, but it feels so good to not be alone.
For me right now it’s the mix between living in the now and trying to take care of future, as you’ve said.
I am trained in reading scientific papers and I can say that all of them present limited sets of data well. What is missing is the heart of the topic - the human being at the centre of this all. They make no promises or reassurances. I think what I’m attempting to say is what I’m looking for is hope. And right now that’s going to come from us and I’m going to try everyday for this.
Hi Meh ess. I can’t give any better advice than those who responded previously. Admire your ability to ask for hug and reach out. Bet you are a great doctor. As someone who has injections in both eyes I can tell you what a difference it makes not to have a robotic doctor giving you treatment. Don’t let your imagination run riot. As someone else suggested, things often turn out better than we fear. That’s been true for me anyway. I meditate most days. It has helped me. Find a meditation site on line where you can sit with others on zoom. The mindfulness association a morning and evening session. It’s good to know others are out there and people a variety of countries sit together. Great for beginners And experienced meditators. Give yourself a big hug on my behalf. Hearts love.
Thanks Shimano, your words are very kind. As I’ve become a patient I like to think I’m growing in compassion and over time I realise trying to keep emotions separate from the job isn’t right for me. My ophthalmologist is a really decent human being and it’s so good.
Stress has been a pretty major feature of my life - it’s almost built into the job description. I’m hoping to work a little less intensely going forward, but as we all know life is complicated. I know mediation and mindfulness help but your words I think will be the shove to get me going.
I think the unpredictability and variability is very hard to live with day to day, especially when you don't know how it may affect your career. Talking it over with others is a good idea, and it's the bit I didn't do so I really recommend you don't make the same mistake. I was lucky (and perhaps a bit more cautious than I give myself credit for that I moved to a largely computer based role, which is a lot easier to continue with if sight loss progresses
Hi Mehness - I’m 60 and was diagnosed with myopic degeneration in one eye in March 2019, the day my eye doc group closed down for COVID. Although I’ve been -17 and -18 (unchanged since I was born), I had never heard of this. My docs were great, sneaking me in for Eylea injections while they were “closed,” but over the next year, I went from a little spot to functionally blind in that eye. Last month, when I started seeing a grey spot in my good eye, I just sat and cried.
For me, and maybe it’s the same for you, what I was really crying for was my potential loss of independence and control. I had just retired from a 40-year career in higher ed, and was looking forward to traveling a little, reading a lot, and doing lots of things I hadn’t had time to do. I still don’t know what I’m going to do, but I did do two things that helped me.
First, I saw a therapist and got on a low dose of an antidepressant, not so much for sadness, but for help with ruminating. I had lots of trouble thinking of anything else but what might happen to me in the future, and I’d get in a loop and not be able to stop. This helped tremendously with that. Second, I sat down and made a list of things I’d still be able to do with limited sight. I spent a day without my contact lens in my good eye and relied only on the bad eye. I could do more than I thought I could.
I’m sending lots and lots of hugs to you - that’s what is so great about this group. We understand.
sorry a bout any spelling mistakes as I have limited vision I both eyes and sorry my right had the retinal detachment and the left had small myopic cnv and lead to 2 retinal tears and a submacular hamrioge which have been treated .I have done a lot of research due to myopic macular degeneration and it’s good they have myopia control so the young generation don’t to go want I went through it’s a bumpy ride stay positive 🙏
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
MACULAR EDEMA & AVASTIN INJ
Update on Eylea treatment
One-eyed AMD
Anti VEGF help
