Charlie 52

[C1L2]

After years of using many drops and 3 failed SLTs, I was hoping to gain some insight as to the benefits ( or flaws) of more invasive surgeries. Any advice would be appreciated.

[Rainyday2024]

Hello Charlie, I have been using a cocktail of various drops for my glaucoma for many years. The sight in my right eye was getting worse and when I had the dreaded field tests done, I could hardly see any of the lights. I had SLT done on the right (worse) eye a few years ago, but it didn’t improve things. For some reason, I’m sure it was explained to me at the time, I was not a suitable candidate for a trab. So it was suggested I have a tube implant done. I was very unsure and nervous about any operation on my eyes, although I had cataracts successfully removed in 2010, but this tube thing they were suggesting sounded a bigger (and riskier) operation. I put it off for a couple of years, during which time I expect the vision was getting worse. My NHS consultant recommended I visit a very well recommended consultant/eye surgeon in the Birmingham area. After several visits, I felt reasonably confident to agree to the operation, which he did at the end of April this year. It cost me a lot as I went private, mainly because I wanted to be certain HE would be doing my operation, rather than “one of his team”. It will be eleven weeks tomorrow (Sunday) since my operation. Although it has not given me back the sight I’ve lost (which I knew it couldn’t, nothing can) hopefully it will prevent me losing what little sight I have left in the eye. The procedure was called a Paul Tube implant. It is an alternative to the older types of tube implants, also known as aqueous shunts, for example Baerveldt or Ahmed valves - I won’t go into any more details, but if you feel it might be useful for you, you can Google it. Hope this helps in some way - feel free to ask me any more questions such as post op care, etc etc. Regards, Gill

[C1L2 in reply to Rainyday2024]

Hi Gill, thank you for responding to my post. Hope the Paul Tube is working well for you. I am going to research it. Just wondering how long before you could drive after the surgery. And you said that you were not a candidate for a trab. Do you mind if I ask why?

[Rainyday2024 in reply to C1L2]

Hello again, I can’t help with your question about driving, as owing to my vision problems, I gave up driving several years ago. It was my choice, as I was becoming more and more aware of my lack of peripheral vision, especially in my right eye and I did not want to risk hitting anyone or anything!! The DVLA were aware of my problems and I had to take their field tests each year, which I somehow managed to pass - but I was losing confidence and thought it better/safer to stop driving altogether.

The reason I was not suited to a trab? Without getting out all the correspondence from various eye specialists, I’m pretty sure it’s because of the very poor condition of my eyes - extremely short-sighted for all of my life which has caused numerous other issues to the back of the eyes, including “long” eyes shaped like a rugby ball instead of round like a football!! So everything got stretched and I suppose thinner. Although the cataract operation worked a treat and gave me very good distance vision, the damage at the back of my eyes still remained unfortunately and I developed what they call myopic macula degeneration. My family have a history of bad eyes! There was another procedure, also beginning trab…….. which I would have to look up, but there again, I was not suited to that as it was considered too risky. As I said previously, after putting it off for several years, I bit the bullet and agreed to the Paul Tube implant, knowing all the various risks etc, but also knowing if I didn’t have it done, I would most likely lose the sight in the right eye within I couple of years. I had to visit the specialist every week for four weeks following the op, then every three or four weeks, it’s been a way of life and seems strange now when I don’t have to go as often. How sad is that? My next appointment is 6 August. The drops regime after the op was very intense, with one lot of drops having to be used every two hours! Thank goodness for a mobile phone with an alarm! I should be finishing with the steroid drops next week, so that will be one lot I won’t have to bother with! I hope all this hasn’t put you off considering the Tube (Shunt) or whatever they call it. Kind regards, Gill

[C1L2 in reply to Rainyday2024]

Gill, Thank you so much for responding. It helps a lot while trying to sort all this stuff out. Hope the Paul tube is working well for you. Sounds like you have been through a lot. Thanks again, Charlie52

[Peg99]

Hello Charlie, I have normal tension glaucoma and when first diagnosed it was not controlled by drops and SLT and other such procedures were not available then. I lost most of my sight (5% of central vision left) while they were deciding what to do.

Eventually I had trabeculectomies in each eye which thankfully, worked. Yes they were unpleasant, involving a week in hospital each time in those days (1990s) and umpteen drops immediately after to prevent scarring, infection etc, etc., but eyes settled down in 6 months and I'm told that trabs are still working! I have been on various cocktails of drops since then to keep my eye pressures low (below 10) and currently take Betagan, Roclanda and Brimonidine as well as Diamox capsules. Like Rainyday, my eyesight was so limited I had to stop driving on diagnosis which at the age of 29 seemed like the end of the world a tthe time but I have managed. My Mum had a trab some years after me nad she only had to refrain fron driving for 6 weeks - until her vision had returned to normal.

I can't really offer you advice about what you should do. All I can suggest is that you weigh up the likelihood of your condition remaining uncontrolled without any surgery offered to you. Once you lose any sight, you will not get it back. You need to feel that you have done all you can to preserve your sight.

Good luck to you and I wish you well for the future.

Best Wishes, Peg

[C1L2 in reply to Peg99]

Peg, Thank you for your response. It is encouraging that your Trabs are still working after such a long time as well as your mothers'. Thanks again, Take care, Charlie