Primary Congenital Glaucoma

Question:

Did you undergo surgery for your primary congenital glaucoma? Please describe your experience and the results. Submit Your Comment

Comment from: MDSX1, 35-44 Male (Patient) Published: October 26

Apparently I have undergone more than 2 surgeries so far due to primary congenital glaucoma. Both my parents are gone now and stupidly until recently I've never had the need or thought to ask exactly what they were but here's what I know. After I was born my mother brought it to the doctor’s attention that something wasn't right, and over a period of about 2 months, I was tested and found to have this condition. Subsequently they performed surgery to stop any more damage accruing but have been told this only worsen things. After that I was sent to London and they managed put a halt to the glaucoma without so much of a black eye. Some time after that I had lens stretching and something else. As a result of everything I was left blind in my left eye and it was also permanently facing my nose (lazy) and had a degree of photophobia. Obviously I had to do all the usual things growing up, glasses, patches, etc., and yearly tests. At 12 years of age, I hated the way my eyes looked and the torment from other kids didn't help so I went for more surgery to straighten my eye. From what I remember it hurt but in the most part was successful. Things go a bit south here, I'm now 36 and because of the glaucoma and the operation that I've had I now have quite severe photophobia, have a bullous keratopathy in the left eye causing me no end of pain and leaving me pretty regularly unable to proceed as I normally would, even with the daily activities, so more surgery is needed. First up is an amniotic membrane graft to try and ease the discomfort but this is not a long term fix as the graft only lasts up to 4 to 5 weeks meaning more may be needed depending on the second surgery, a deep layer cornea graft (transplant). I've been on the waiting list for 8 months but have been told that I might be waiting quite some time yet. This condition will probably affect me the rest of my life but even with all the operations, discomfort, pain and the struggle to get help I consider myself lucky. It is all worth it to stop my world from becoming a permanently dark place as then the struggle really would begin.

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