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View Topic "I've got Congenital Glaucoma... My story"

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Posted By: cbarnes
Total Posts: 3
Joined Date: 9 Mar 2012
Hey everyone,

I\'ve been reading through this forum for ages, and I\'m astounded by the number of children out there who, like myself, have been diagnosed with congenital glaucoma. Like Ruth, I\'m now in my early 20s, and at the other end of a childhood with glaucoma, so thought I\'d share a brief version of my experiences with you.

Firstly, I\'ll start by saying my case was quite unusual in a number of ways - I only have glaucoma in my right eye (most of the above seem to be lefties!), and as a side effect of another condition - I have an Ectopic Uvea, which means that the pigmented layer of my eye has spilled over onto the blue of the iris. You can actually see a picture of my eye here http://www.flickr.com/photos/andreasfina/4922681369/ (my partner thought it would make an interesting photograph). So as a result of this abnormal eye development, the pressure in my eye slowly but surely crept up through my childhood. Although I was regularly visiting an optician, for I always had weaker vision in this eye, this went undetected, and it was only when a maternity leave cover optician stepped in that he spotted that something was up. It is for this reason that I believe children should also have routine pressure checks.

As I\'m sure you know, the average pressure range in a healthy eye is between 12 and 21, but when this man pressure checked my bad eye, the pressure was 56. At the age of 10 I was immediately referred to the hospital, and went through an operation (I\'m afraid I cannot tell you the exact name of the procedure, but it involved making a small incision to help the eye drain). The pressure was measured immediately after the op at 6, which was a rather dramatic drop, but soon after, with the help of a range of about 4 eyedrops taken throughout the day, it stabilised at the low end of the normal range for a while. It was sadly too late by that point to save my vision, and I am now almost entirely blind in my right eye.

However, it soon became apparent that the pressure was rising again, up from the 20s to the 30s, and the specialist at the hospital told me that the drainage channel had healed - because I was so young. This process was repeated twice more - operation, pressure increase, operation. I know the last one was a different one, possibly a trabeculectomy. I also had an anti-healing injection in my eye afterwards. Since that last op, my pressure has stabilised in the high 20s. Although this is not ideal, it can be maintained with one Travatan drop every evening, and as the vision is already gone and I experience no discomfort, it made no sense to undergo another operation.

As a result of this, I developed a squint in this eye, and it tended to wander to the outside, particularly when I was tired or working long distance. A couple of years ago I had my fourth and final eye op to correct this, and now I finally feel like things are under control. Internally and externally my eye is ten times better, and has worked wonders for my confidence.

I graduated last summer with a first class degree in fine art, and have since set up my own photography business, so my vision is everything to me! Fortunately the vision in my left eye is better than average, so does a good job of compensating. I am therefore able to drive and lead an almost entirely normal life. The only thing I struggle with is depth perception, so I\'m not a great catch!

Sometimes I look back and start to feel angry that I was let down by a number of professionals....the doctor from the hospital that told my Mum when I was a baby that, although my pupil was irregularly shaped it would cause me no problems, and was nothing to worry about. I have since been told that Glaucoma can often develop as a secondary disease after having an ecoptic uvea. I am also disappointed that the optician did not spot anything abnormal sooner - if it had been identified before the optic nerve was so badly damaged, then I would still have sight in my right eye.

However, the last thing I want to do is leave this on a negative note - although I am sure that having a baby or young child with glaucoma must be extremely difficult, at least it has been identified in time. I have no doubt in my mind that all of your children receiving treatment are in great hands and will have a very positive future.
Posted : 12 Mar 2012
Posted By: cbarnes
Total Posts: 3
Joined Date: 9 Mar 2012
Hey everyone,

I\'ve been reading through this forum for ages, and I\'m astounded by the number of children out there who, like myself, have been diagnosed with congenital glaucoma. Like Ruth, I\'m now in my early 20s, and at the other end of a childhood with glaucoma, so thought I\'d share a brief version of my experiences with you.

Firstly, I\'ll start by saying my case was quite unusual in a number of ways - I only have glaucoma in my right eye (most of the above seem to be lefties!), and as a side effect of another condition - I have an Ectopic Uvea, which means that the pigmented layer of my eye has spilled over onto the blue of the iris. You can actually see a picture of my eye here http://www.flickr.com/photos/andreasfina/4922681369/ (my partner thought it would make an interesting photograph). So as a result of this abnormal eye development, the pressure in my eye slowly but surely crept up through my childhood. Although I was regularly visiting an optician, for I always had weaker vision in this eye, this went undetected, and it was only when a maternity leave cover optician stepped in that he spotted that something was up. It is for this reason that I believe children should also have routine pressure checks.

As I\'m sure you know, the average pressure range in a healthy eye is between 12 and 21, but when this man pressure checked my bad eye, the pressure was 56. At the age of 10 I was immediately referred to the hospital, and went through an operation (I\'m afraid I cannot tell you the exact name of the procedure, but it involved making a small incision to help the eye drain). The pressure was measured immediately after the op at 6, which was a rather dramatic drop, but soon after, with the help of a range of about 4 eyedrops taken throughout the day, it stabilised at the low end of the normal range for a while. It was sadly too late by that point to save my vision, and I am now almost entirely blind in my right eye.

However, it soon became apparent that the pressure was rising again, up from the 20s to the 30s, and the specialist at the hospital told me that the drainage channel had healed - because I was so young. This process was repeated twice more - operation, pressure increase, operation. I know the last one was a different one, possibly a trabeculectomy. I also had an anti-healing injection in my eye afterwards. Since that last op, my pressure has stabilised in the high 20s. Although this is not ideal, it can be maintained with one Travatan drop every evening, and as the vision is already gone and I experience no discomfort, it made no sense to undergo another operation.

As a result of this, I developed a squint in this eye, and it tended to wander to the outside, particularly when I was tired or working long distance. A couple of years ago I had my fourth and final eye op to correct this, and now I finally feel like things are under control. Internally and externally my eye is ten times better, and has worked wonders for my confidence.

I graduated last summer with a first class degree in fine art, and have since set up my own photography business, so my vision is everything to me! Fortunately the vision in my left eye is better than average, so does a good job of compensating. I am therefore able to drive and lead an almost entirely normal life. The only thing I struggle with is depth perception, so I\'m not a great catch!

Sometimes I look back and start to feel angry that I was let down by a number of professionals....the doctor from the hospital that told my Mum when I was a baby that, although my pupil was irregularly shaped it would cause me no problems, and was nothing to worry about. I have since been told that Glaucoma can often develop as a secondary disease after having an ecoptic uvea. I am also disappointed that the optician did not spot anything abnormal sooner - if it had been identified before the optic nerve was so badly damaged, then I would still have sight in my right eye.

However, the last thing I want to do is leave this on a negative note - although I am sure that having a baby or young child with glaucoma must be extremely difficult, at least it has been identified in time. I have no doubt in my mind that all of your children receiving treatment are in great hands and will have a very positive future.
Posted : 9 Mar 2012
Posted By: optimist
Total Posts: 77
Joined Date: 9 Dec 2008
Thank you for sharing your story. You have all gone through so much in such a short time and it is inspiring to feel how positive you are. I hope Phoebe's pressures continue to remain stable and she remains a happy baby. Best wishes and good luck for the future.
Posted : 31 Mar 2011
Posted By: LittleB
Total Posts: 1
Joined Date: 30 Mar 2011
Hi All, it is so reassuring to know that you're not alone going through this. I have a beautiful baby girl called Phoebe who is now seven months old. As soon as the midwife handed Phoebe to me when she was born I knew something was wrong with her eyes, as I could not see her pupils in either eyes and thought she was blind. none of the doctors could confirm what was wrong with Phoebe and referred us to the Royal Eye Hospital in Manchester. We had no idea what was in store for us. As soon as we saw our consultant he informed us that it was congenital glaucoma and that they needed to operate straight away. He wasn't too hopeful about Phoebes left eye but more optimistic about her right (strange how it seems to be the left eye that is worse for you all too?). Phoebe has had 2 trabeculectomies and needed anti scarring injections - to date she has had five operations. For the first three months she was on hourly eye drops and had to wear little eye shields. We are fortunate that Feebs eye pressures at the moment are stable and are going for check ups every four weeks. considering how severe the glaucoma was, it is amazing Feebs has sight in both eyes. The thing that I find hard at the moment is patching. Because of the significant difference in both eyes, we have to patch the right to maintain the sight in the left. We are currently doing four hours a day. Me and my husband thought, foolishly, that patching would only be for a short time, but will be required to the age of eight! Phoebe hated this at first and was very scared, as she is extremely short sighted in her left eye, but as time goes on, she is much more use to it and it is encouraging to see that it seems to be paying off, as she is focusing better with that eye. As a mum I naturally worry and really found it hard to get my head around, and still think that maybe when I wake up tomorrow all will be well, but I think as things have settled down I have had time to think about things. Phoebe is the happiest baby I know and always smiles, she is a true joy and I am so proud of her, I am also grateful that, touch wood, there seems to be nothing else wrong. I have really found comfort in reading all your posts as I have felt there is no one else I can talk to who can relate to what we are going through, there seems to be no local support groups. I am also reassured to read posts from adults who are living with this condition and feel more positive about the future for Phoebe. I wish you all well and thanks for your posts xxx
Posted : 30 Mar 2011
Posted By: congenitalglaucoma
Total Posts: 2
Joined Date: 20 Feb 2011
It is really inspiring to hear so many stories of people living well with congenital glaucoma! I also have congenital glaucoma and lost vision in my left eye but have not let it slow me down one bit. I invite you all to become part of a new website that I have created called the Congenital Glaucoma Network. (http://www.congenitalglaucomanetwork.com). This network was founded as a place to facilitate discussion, provide support, and promote awareness of congenital glaucoma. Your stories and words of wisdom are invaluable to other dealing with this disease. 
Posted : 20 Feb 2011

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