I'm wondering if anyone can help me? I have congenital Glaucoma, i was diagnosed at 1 years old and i'm now 39. I've had a trabeculectomy in each eye and have been taking two types of eye drops for years now. My pressures are stable, but my field tests are getting worse.
My problem is, in my area I rarely get to see a consultant as the clinic has been under staffed for years and my last few consultants retired. I get sent to a nurse led clinic where they can't answer any of my questions. I have recently recieved a copy of a letter sent to my GP after an OCT scan which states the 'ganglion cell layer shows thinnning' and the 'retinal nerve fibre layers were outside normal limits.' I have googled a lot, but still don't understand how serious this is.
Does anyone know what this means? Thank you in advance.
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sunflowerfield1
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I wonder if it’s worth trying to see a GP, to see if a) they can explain the terms and/or b) get you an appointment with a consultant? My own experience is that, after years of inadequate treatment at my previous hospital, I saw a consultant privately. The cost was £250, but for me, it was worth every penny. I hope you manage to get some help-wishing you the best of luck.
I've been getting OCT scans at my optician and the hospital... the optician has has been better for understanding the process because they have time to sit with me and go through the scans in detail
what they seem to be looking at is the thickness of the nerve tissue in the retina, thinning being indicative of glaucoma damage
there are some absolute measures - parts of the scan in my R eye are coloured red and yellow, while my L eye is mostly green, but the thing they spend most time on is comparing the latest scan with scans from previous visits, to see if there have been any changes which would indicate progression and a possible need for further treatment
I think you should make an appointment with the eye clinic for this result. Usually it should be explained by the consultant or one of the team members. Not only the result but also for further management - what is the next step to do etc. with best wishes.
Tthe changes reported are just the inevitable effects of the condition and are the cause of VF loss. Awful tale of poor service; may be worth paying for an appointment to get a satisfactory explanation.
I can't make an appointment with the eye clinic, it's the hospital eye clinic that send me to the nurse led clinic. I have asked previously how i would get to speak to a human and was given a number that just rings and hangs up. I used to have check ups every 6-12 months and had the the consultant's secretary extention if i needed to talk with anyone. There is not phone number on the letters anymore and I have never heard of the consultant that is dictating the letters. They can't even be bothered to glance at my file to get the history correct on the letters.
The new letter says that it is advised that i have another fields in two months, but it took 10 months to have my last fields test that was supposed to be at 6 months (also at the nurse clinic). I thought about going to the GP, but they are useless. I also had a scan at Specsavers a few months before the scan at the clinic and they said everything was fine and nothing had changed since my last appointment with them. Sorry, that was a long rant. I appreciate everyone taking the time to reply.
I have had similar problems with contacting ophthalmologists since the pandemic - everything changed then and 'remote' clinics sprang up with technicians instead of doctors. Specsavers can bridge the gap but otherwise it seems we need now to book private consultations to see consultants who have enough time to answer all our questions and give an opinion.
Hi there. I'd just like to echo what others have said above. Thinning of nerve fibre layers is an indication of a deterioration of the optic nerve, which can mean that glaucoma is getting worse. If you cannot get an appointment via calling the eye secretary then you can call PALS to complain about this. As others have suggested as well, if you did want a private consultation then you are well within your rights to do this, and you will keep your place within the NHS.
Thank you for your advice. I wish I could afford to go private. I will look into a complaint, it will be a bit uncomfortable though. I work for the hospital (non clinical) that i should be seen at.
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