Myopic Macular and ecstasia : Hello to you... - Macular Society

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Myopic Macular and ecstasia

kyrp
kyrp

Hello to you all lovely people on macular society ..am a new member and glad I joined.. it has been really good to find people going through similar or different eye problems ...i have not only learned more but also feels less lonely ...I think.my eye problems started from a young age but not picked till much later ...had a cornea graph 36 years ago on my Right eye and on my left 16 years ago dye to keratoconos ..am very myopic -25R,-14 L with astigmatism...my left eye even after a cornea graph with contacts never achieved v good sight this is due to my macular issue which is pretty bad ...when i turned 50 about 6 years ago my vision changed thought I needed reading glasses or something 🤣had distorted vision (wanky lines ,letters not straight ,peoples faces distorted )shocked to find out that had old scaring and a diagnosis of dry myopic macular degeneration...they scaring thing was they said they couldn t do anything !!!.my vision bounced back after few months (had intensive homeopathy, plus lots supplements not sure if that helped)obviously the condition is still there but the symptoms appear very rare ...would like to ask has any of you diagnosed with similar and after end up to Wet form ...they told me that it might not happen to me or it might take long time to progress?..at the moment apart from dealing with my cornea on my good right eye as got ecstasia (can t tolerate contacts for too long )am also having scans every 6 weeks to check for fluid in my macular ...i had to give up full time work as couldn t wear my contacts too long )my future doesn t look that great but am not giving up trying to find the best posdible way forward ..any extra info with something similar and yr experience would be helpful ..thank you

12 Replies
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Hi kyrp

You have certainly had a lot to contend with. High myopia brings many problems. I'm roughly -12 in both eyes which I have found hard to deal with but I have been shocked to find on this site how very much higher prescriptions can be as in your case. It seems we are at high risk of many different eye problems.

I'm glad you have been helped by this site. I have too. It helps so much to know you are not alone. I'm amazed at how much knowledge people have on this site and whatever you ask, some one has good advice.

I have several diagnosis including macular CNV but ecstasia isn't one of them (at least not yet) but I'm sure someone else on this site will be able to advise you.

Best wishes to you. G

kyrp
kyrp in reply to 2468G

Thank you for taking the time to reply 2468G ...yes am very high myopic but I found out that due to that I developed the dry myopic macular...I wished they warned me about that maybe I would had started earlier using homeopathy and all other alternatives maybe that would helped me ?obviously with these things u never know....ecstasia is due to a very old (36 ) cornea transplant ... hope things won t go worse for you ..u aren t the highest so hope it stays that way ...fingers crossed for you !...all the very best

2468G
2468G in reply to kyrp

I too wish I had been warned of the problems which could occur with high myopia. I would have definately upped my nutrition and used supplements. As it was I just thought I had a life dependant on contacts and glasses.

I hadn't heard of ecstasia. Thanks for the info and your good wishes. All the best to you too. G

Hi Kyrp,

Another high myopic here. You did a good thing by trying the homeopathic route. I think I would be much worse if I didn’t at least try to boost my eyes nutrition. Im sorry for all you are going thru. I can relate, believe me. May I ask what supplements you used? I would be interested to see if I could add anything to my routine. Thanks so much.

kyrp
kyrp in reply to BasiRose

Hi BasiRose ...yes i think nutrition can play a part to overall good health which obviously can help the eye condition too...as to nutrition I have add lots of the berry family ..blueberries,raspberries,blackberries..I use them every day for their antioxidants also kale,spinach and recently wheatgrass as read it helps for cataracts which unfortunately I have to deal as well ..plus peppers,cinnamon,turmeric...as for supplements thru years and still use are ..macushield,billbery,fish oil added recently saffron and in the past also grapeseed...also used another supplement visionaid but not at mom ...recently started accupunture and Chinese herbs ...I do spend a fair amount every month for good food ,supplements and treatments but my vision is so important and with my complex eye condition am trying to maintain what I have and help for improvement if possible...it has been harder the last 2 years as my cornea graft on my good right eye can t tolerate the contact lens too long and it looks that I might need another transplant ..still investigating thou ...anyhow,all the best to u and if any extra info in regards yr supplements or anything else would v much appreciate ...thank you 🙂

Hidden
Hidden

Hello kyrp

First of all, welcome to our forum. Indeed, we have a large number of wonderful people on this site, sharing experiences and supporting each other, not to forget the Macular Society itself; you can always talk to them privately if you wish.

I am sorry to hear of all your complicated eye issues. Certainly, severe myopia causes a lot of eye problems. Before you worry too much about the dry AMD, which, as you were rightly told, may never turn to wet (only 10 to 15% risk) remember that much of your poor vision may well be due to your cornea problems. Astigmatism, ectasia and keratoconus can all cause distorted vision. So, your dry AMD may not be as bad as you think. Have you actually been told that it is bad? If you were unfortunate enough to develop the wet form there is treatment available which works well for many people. So, the future may not be as bleak as you think.

Maybe you should wear specs rather than contact lenses to lessen the irritation to your eyes unless they are specially for your refractory issues. I take it you mean corneal grafts rather than graphs?

I like your spirit to battle on. Keep it up!!! And keep us informed how you are getting on.

Best wishes

kyrp
kyrp in reply to Hidden

Thanks for your response stay at ..just o say that I can only have decent vision with contact lens ..all these years that was the case and unfortunately it still it,'s my case case after 36 years ...i had cornea graphs both m eyes ...

kyrp
kyrp in reply to Hidden

Sorry ayayay realised that my message went through which wasn't my intention as bit unfinished etc ...anyhow, thank you again for yr comments also to add that I 've been told that my macular is bad on my left and there is an atrophy and also that due to that even after a cornea graft (it was a semi cornea graft )still haven't achieved the best outcomes ..now even worse as I got early cataract as well and becoming bit intolerant to my contact lens which I heavily rely on these as no glasses possible to give me vision ...thank you again and all the best for you too ..

Hidden
Hidden in reply to kyrp

Hi again, kyrp. It never fails to amaze me how many different eye conditions exist. Although not having myopia myself I am aware how many problems can be caused by it. You obviously have bravely battled with it for most of your life. I wish science had made more progress with solving, or at least alleviating, the problems as it has been known for a long, long time. I wish there was anything I could say to comfort you. There isn't, except to say, try to engage in the things you love to do as far as possible and keep up your spirits. Words, I know, but meant from the heart.

kyrp
kyrp in reply to Hidden

Thank you so much for your kind words they made me smile on this rainy cold winter day 🙂 ...all the best to u too

Also a high myope. Originally diagnosed with POHS left eye. Symptoms similar to wet AMD. Surgery to remove blood vessels causing central vision distortion/loss was unsuccessful leading to complete left eye blindness. 10 years later right eye vision distortion, but treated with drug injections since 2010. Myopia continues to increase slowly (not nearly as severe as yours) , but vision loss stable. As mentioned above wet AMD symptoms treatable. Note: be cautious with injections. I have received Avastin, Lucentis and Eylea. I am greatful for the treatment as they have saved my vision from distortions/blind spots but as with everything there are risks. Avastin and Eylea (in Canada) are shipped in large volumes and repackaged into single doses. If the pharmacy who repackages uses the wrong type of syringe, silicone oil contamination from the syringe in the drug treatment can occur. For people with regular AMD it can be treated (surgically) but for those with other (more severe or already monocular) conditions there may be a long lasting impact of an oil bead in your vision.

Best of luck in your treatment plan. Thanks for sharing the info about the natural nutritional choices that you have found useful.

kyrp
kyrp in reply to Scrmom

Hi Scrmon...thank you for sharing the info in regards to injection ...am not having these but I'm aware that it might lead to that have scans every 6 weeks ...so sorry to hear about the unsuccessful surgery u had and loss of yr vision...it must had been such a difficult devastating thing to go thru ...hope that with yr treatment they can stop the progression of yr condition to yr other eye ... hang on there my friend hope u are having all the support u need ...yes, am exploring alternative medicines and nutrition to support my body with my eye condition and not only with stress and emotional upheaval it has brought into my life ...all the v best to u

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