Feel free to ask 👍🏻😆

[blurredbird]

Hi i'm new but have a huge knowledge about Glaucoma, i myself have Congenital Glaucoma and would love to help

[music007]

Hi, I am new on here too. I am not sure if you have seen my post before. I was born and diagnosed with Congenital Glaucoma with Buphthalmos right eye in 1983. I used to live with high pressure of up to 35 in my right eye most of my life and I have always lived on eye drops. I was advised by my hospital consultant that I would be blind at the age of 21 but just before my 30th birthday I went blind in my right eye. I have had various eye operation procedures Goniotomy, Trabeculectomy when I was at a very young age then I had Cyclodiode Laser Surgery in October 2011 and July 2012. In December 2012, I had a right total retinal detachment. In January 2013, my right eye went completely blind. I was advised by my hospital consultant if they were to put the retinal detachment back on, I would stay completely blind and the pressure in my right eye would shoot back up again with very high pressure. After my total retinal detachment and blindness in right eye, my right eye started shrinking, causing a lot of pain and discomfort. My hospital consultant had noticed some anterior uveitis in my right eye which associated with the total retinal detachment and early phthisis. In January 2017, I had a right corneal vascularisation and phthisis, corneal oedema bullous keratopathy with corneal ulcer. In August 2018, my hospital consultant explained enucleation and evisceration - surgical removal of my right eye as an option. In November 2020, I was diagnosed with slight Cataract in my good left eye, which has 20/20 vision. I suffer with Dry Eye in both of my eyes, sensitivity to lights and flashes. When I am out and about I have to wear UV antiglare sunglasses. When I am at home I have to have the lights dimmed right down on the lowest setting. Any problems with either of my eyes is an urgent matter and I have to go to A&E eye hospital straight away. Eye drops I am taking are Hylo Forte every two hours in both eyes. I am taking Dexamethasone Dexafree once a day to my right eye. I have been out of work for a year now due to my mental health - Severe Anxiety and Depression and Stress. I am taking Sertraline once in the morning and Mirtazapine once at bedtime.I am receiving a lot of support through RNIB who I must say are a fantastic service. Any other recommendations I will look forward to hearing if there are any other suggestions.

[blurredbird in reply to music007]

Hya your story is not that dissimilar from mine a quick skip through. Perfect sight till age 10 my mum had Glaucoma, an absolute ton of ops , drops diamox tablets about till age 22 23like yours pressure was up to high through those years once once 55. I was slowly loosing sight all the time was always worse on the left side anyway was in 2007 things got really bad after another spike i lost loads over a couple of months i'd already had a tube put in each eye so options were low so i had a second tube put in my right eye. About 8 years ago i started with terrible pain as like you blisters were forming on the cornea it was the worst pain ever so i had both cornea transplants it was good for about 8 9 months but both transplants did reject the blisters came back and thats me now .I've only got light perseption now in both eyes i hate artificial light and don't let anyone put them on in the house i'm in that room. Like you i haveanxiety and depression i do feel robbed and i think it makes it worse as glaucoma is so unpredictable you never quite sure what its going to do next. Take care feel free to messege me.

[music007 in reply to blurredbird]

Ahh, it really is kind of you to reach out. It really sounds like you have been through such an awful lot. You're right having glaucoma is unpredictable and we never do know what it's going to do next.My condition is hereditary but I am first generation. I can't stand artificial lighting either

[blurredbird]

I don't have any medical training what i have is 40 years experience of living with Glaucoma. 🤨

[Jennymary in reply to blurredbird]

Same as me, no medical qualifications but lived with glaucoma all my life

[blurredbird in reply to Jennymary]

Welcome to my gang 😆🤪❤️

[music007]

I don't have any medical training either apart from living with Congenital Glaucoma for 38 years. The joys of living with eye problems, sight loss in right eye, cataract in left eye and dry eyes and living on eye drops all my life 😂

[blurredbird in reply to music007]

👍🏻❤️