I am new to this site but have been a member of Health Unlocked for some time. I have had glaucoma in both eyes for approximately 11 years and was well controlled until about 3.5 years ago when I developed uveitis in my left eye (my worse eye for glaucoma). It was treated as an acute emergency and treated with steroid drops. Initially I was told for a few weeks but I am still on the drops due to regular flares when the drops are reduced. Due to increased eye pressure , I had a trabeculectomy 3 years ago and it is now failing due to the uveitis. I have also had the same surgery in u right eye 3 months ago.
Following recent visual field tests I have been told that my peripheral vision is deteriorating, especially in the left eye and I will require a shunt t be inserted (urgency depends on which consultant I see during my appointments). In December a shunt was advised, I was put back on glaucoma drops twice a day. At my last visit a week ago, another visual field test was done and no improvement but was told it could be inaccurate due to over pressing the button. I find it difficult to concentrate due to other people being tested at the same time and conversations going on. Another glaucoma drop has been added in the evening and initial drops increased to 3 times a day. I suffer from very dry eyes and use lubricating drops up to 5/6 times a day. My central vision is fine and I can see laterally but appreciate that some peripheral vision might be lost. I am concerned that my test may not be accurate but feeling very anxious that reported deterioration is happening quickly. I have another appointment the end of April and surgery will be scheduled if another test is not good. My pressure they think is too high. It settled about 14/15 after surgery, gradually increased to 29 in December and now 20 with maximum eye drops.
I have a history of Polymyalgia Rheumatica (PMR ) that was successfully treated with steroids but the high steroids initially worsened my glaucoma. The cause of my uveitis has been classed as unknown or linked to this condition or a mild case of shingles on my left shoulder. I feel that it started when I accidently got magnesium spray in my eyes. Any advice regarding the test, diet etc would be appreciated. I have a healthy diet, lifestyle but like most people have some guilty pleasures. Any advice would be welcomed and much appreciated from other followers. Thank you.
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Mitziecat
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You raise a lot of points. There is no doubt that you have had a rough time over the last 3.5 years and I think you have been very patient with your eye team.
I am no expert and have no professional knowledge that can help you but if I were you I would consider seeking a second opinion. It is a weakness of the NHS that you do not see the same consultant every time and this can't be good in a complicated case like yours seems to be.
Is there any way you can seek a second opinion privately? If not, your current consultant can arrange a second opinion on the NHS but you will be able to choose your consultant. Maybe you could find someone you have faith in.
As to the field tests, they are notoriously difficult for the very reasons you state. If you really can't block out the background noise you could perhaps explore the possibility of finding a local Optician who does field tests as they usually have a seperate room for them.
Lifestyle/diet matters are virtually all unproven. The things I do are , no caffeine, lots of green leafy veggies, gingko supplement, Nicotinamide supplement, sleeping with the head of the bed raised by ay least 45 degrees, getting enough sleep and protecting my eyes from the wind with glasses/goggles. All unproven though and I can't advise you to do any of them.
I wish you the best of luck and hope that you get things sorted out for you soonest.
Thank you for your reply Peg99. I do seem to have a number of issues affecting my eyes and I now go to each appointment with an open mind. I do have a named consultant in the NHS clinic but you do not see your consultant at each visit, usually one of his team but could be a different one at each visit (sorry for the confusion). There have been times when I have asked to see the consultant for another opinion as he is usually around in the clinic if advice is required.
I have been told that the VF machine at the hospital is more advanced and accurate than the optician. I will see how I get on at my next appointment and discuss it further with the doctor.
Thank you for the dietary information. I have reduced caffeine but not sure how effective decaf tea and coffee is. I eat healthily and exercise, although this can lapse if feeling demotivated. Alcohol intake is variable, mainly social or if on holiday. I have recently read about sleeping with the head elevated, preferably on your back. I would find that difficult. Thanks again for the advice given.
I have Uveitic Glaucoma (L) and had a Baerveldt shunt in 2013 at BMEC.
the visual field tests are never accurate as at the last examination they said they I have lost vision but I assured them that I hadn't (been the same since the shunt) and pressures have been 8 and never higher than 10. my tests have always been done in complete silence.
Thank you for your reply. Having uveitis and glaucoma together is not good. The ongoing steroid drops can raise the pressure so it becomes a vicious circle. I am hoping that my additional glaucoma drops will reduce the pressure (currently 20). A lot of treatment options depend on the VF result and in my case, eye pressure at the time of my appointment.
yes it is a circle, steriod drops cause pressure to rise, but are needed to control uveitis. that's where the shunt has been a godsend. if the Uveitis does come back, my eye pressure stays the same.
Hello Mitziecat. I agree with Peg99 about doing the visual field test, either at the optician's where they will charge you or request at the hospital, that you would like a better chance of getting an accurate test. Explain the difficulty you have with the distractions and that before consenting to further surgery, you need this to be performed in a quiet room.
Diet should include green leafy vegetables as already stated, reduce caffeine or better still exclude completely. If you're a smoker, try to give this up and exercise for half an hour to an hour a day, if possible. Just walking is beneficial, it doesn't mean you have to go to a gym to workout. Keep hydrated by drinking regularly and alcohol only in moderation.
I wish you all the best, as you have been through a lot but you definitely deserve the best chance of having your visual field test under better conditions, that suit you you, to obtain an accurate outcome.
I will definitely discuss my concerns at my next visit. They have shown me my VF test result and areas where they say I have lost vision but it is difficult to understand the result.
From the information given, I am doing the right things regarding lifestyle and diet. However, I must admit that I followed it more strictly previously but sometimes lapse as it is disappointing when you think you re doing everything right, cutting out things that you like and it doesn’t appear to make a difference. Thanks again for the advice.
Mitziecat,I'm sorry you are going through such a worrying time with your eyes.
I'm in a similar situation to you in that the consultant is talking about a trabeculectomy being needed if deterioration is confirmed, as my near-central vision is already affected . Problem is, my visual fields test results vary.
What I have found helpful is I have visual fields tests done at the opticians every 3 to 4 months which they send to my consultant ( private)before an appointment . They charge for some of the tests. It gives consistency of the test conditions, and my lovely optician will explain things to me .
If, like me, you are also having tests done at the hospital (same consultant at nhs) it's important that they are the same test. I've learned that the visual fields machines can be set to run different tests which use different algorithms to work out your score. In my case it's a 24:2 SITA Standard test. There is also a SITA Fast, andd SITA faster . I had a big panic recently when the test showed significant central deterioration..However, consultant said it was not comparable as the optician had mistakenly run the Fast test, which can give worse results if your vision is low. I hotfooted it back to the optician and re-did the Standard test and the result was better-phew!
I've had about five tests in the last year, and so I've begun to get a history and a pattern in the results., even though each test result is slightly different The optician's machine now runs its progression algorithm and says if it has spotted signs of a deterioration.
I've also found that some doctors are more dismissive of visual fields test results than others. It seems that what is important is the pattern over time, rather than a one off result.
Overall, the whole visual field testing business is a nightmare and can cause so much anxiety. I hope you manage to get some clarity about what is going in with your eyes, and the best way forward.
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