Thought it would be useful to others to record my Glaucoma journey which is just starting.
Age 61
Grandfather had Glaucoma (I'm very much like him physically)
Last routine eye test in 2021 - all clear.
Routine eye test last week picked up suspected Glaucoma in right eye. Left eye clear.
Field vision test showed loss of vision in affected eye.
Pressures 16/17 in both eyes.
Corneas are apparently very thin.
Referred to GP. Waiting time to see an NHS consultant is 8 to 12 months.
Have decided to pay for a private consultation to confirm diagnosis and to plan a route forward. Have an appointment next week at Manchester Royal Eye Hospital.
To be continued.....
Written by
Sapeur87
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It's a long time to wait for confirmation. We have a separate glaucoma clinic here now, though there have still sometimes been long gaps between appointments.
It's always intersting to hear others' stories - thank you for sharing yours.
I too have normal tension glaucoma in both eyes and after a few years of NHS clinics back in the 1980s (when they weren't as overloaded as they are now), I switched to private consultations. It made me feel much more in control of my glaucoma and of course there was much more time for questions and explanations.
I have had a number of different consultants over the years as I have moved around the country, but they have all been willing see me as a private outpatient and switch me over to NHS should the need arise for any procedure that I could not afford. Thankfully, that has not been necessary as I got my 'procedures' over at the beginning of my glaucoma journey. I will stay private for as long as I can.
As your Grandfather had Glaucoma you are probably aware of what to expect, though much has changed in the management of the condition in recent years. It is good that your glaucoma has been picked up early on (or so it seems) and that you will have it monitored from now on with drops/procedures as required to keep your glaucoma stable and prevent sight loss. Knowing is much better. Now you can manage it.
Good Luck with your appointment next week. Let us know how you get on.
Cheers Peg. I'm very scared tbh, it's been a bit of a shock, although I've sort of been expecting it if I'm honest. I need to feel in control of the process and find the NHS is too chaotic, difficult to navigate and too confrontational for me. Luckily I can afford the initial consultation so we'll see where we are next week. Appreciate your input. It all helps. Will update next week.
It is scary when you first get the news Sapeur, I was scared too. I'm sure you will adjust soon.
I agree, you need to feel in control of the process and the only way you can do that is to get all the information you can. As they say, knowledge is power!
The NHS is very chaotic and Ophthalmology Departments are fighting a losing battle as the vast majority of their patients never get signed off. I jokingly refer to the Ophth Depts as Hotel California - you can check out but you never leave!
Pretty basic stuff and I don't mean to be patronising, but you will need to take a list of questions with you to your consultation next week so you can make the most of your time with the consultant. I have always found them very helpful, kind, caring and understanding and I hope you do too. One of the questions you might like to ask is what is likely to be the safe pressure for your eyes? In my case I was told nothing above 12 and for many years I visited local Opticians to have my pressures measured as a means of keeping control of my glaucoma. (I now have Tonometers at home to measure my own pressures but that is very expensive and I only did it because I was 29 when I was first diagnosed and I wanted to keep my sight for a very long time - which I have.) Visiting Opticians is just something for you to think about.
Lots of useful information on glaucoma.uk website and their helpline is good too. I'll keep my fingers crossed for you.
Excellent advice, thank you and very much appreciated. My list of questions is growing by the day ..... hopefully my consultant will have the patience of a saint.
Was meant to have an appointment end of last year but the Opthamology department can’t see patients as the building the clinics were in has been closed down ( think for safety reasons) and there is nowhere in the main hospital they can accommodate them
So what should have been a 2 month follow up is looking like it could be at the earliest 4 months maybe longer
As you can imagine thus is causing me some some anxiety.
After my diagnosis I ( typically) didn’t ask any questions but not long after had a list
So I understand your decision to go private
Good luck and stay connected on here . I’ve found there is so much support
Hi I was also diagnosed with normal pressure glaucoma this week. Wasn’t expecting it and so didn’t ask the questions I now have. I have other eye complications so am currently on the hunt for a good private specialist in the Manchester area if anyone has any suggestions? Also would appreciate any suggestions for questions I should be asking
Update 22/02/24: Stayed overnight in Manchester in a cheap hotel near the hospital.
Appointment at 0940 at the Manchester Royal Eye Hospital. The consultant was very thorough. Confirmed open angle low tension Glaucoma in right eye alongside loss of some field vision. Left eye currently normal. Worth noting that he was pleased that my optician had carried out all the necessary tests correctly and diligently and had sent them to him via e mail attachments, which meant none of these tests had to be repeated, thereby saving on further fees.
The consultant answered all my questions clearly and consisly. Pressures consistent at around 16 in each eye.
Treatment options:
Right eye - drops or SLT laser to lower pressure by a target of 30% max. If successful monitor over time.
Left eye - no treatment necessary at present and monitor over time.
Laser will eventually need to be redone over time dependent on results and effectiveness of treatment.
I've opted for laser as I don't fancy putting chemicals in my system (drops) for the rest of my life.
He wanted bloods taken by my GP but this is problematic as I'm NFA (live on a narrowboat) so I asked if it could be done there and then. The answer was yes. (Cost £40). I asked if the laser surgery could be done today, asking more out of hope than expectation really and after a quick check of their systems (and to my great surprise) the answer was yes. Hooray! However, machine was being serviced and so he couldn't do it. Boo!
Bloods taken.
Laser surgery to be carried out within the next two weeks by the same consultant. Awaiting booking confirmation.
Costs:
Consultant fee £245
Bloods and laser surgery on one eye £369.85.
Thoughts: The waiting list just to see an NHS Opthalmologist consultant in my GP's area (Sussex) is about 12 mths. I wasn't prepared to wait as I was too anxious. Private treatment was a no brainer for me and I received impeccable treatment. I am not rich by any means but I only wish everyone could afford the choice and that the speed of consultation was the same on the NHS. I will eventually move onto the NHS for monitoring purposes. Not sure of the protocol on here for recommending consultants, but mine was suburb and happy to recommend if allowed. If you can at least afford the initial consultation fee then it is money well spent in my opinion. Your diagnosis and treatment options are then clear, which in turn gives you a base line to work from and a certain peace of mind.
I will update on the SLT laser treatment when I have had it.
Hope this helps.
I would add that whilst feeling sorry for myself waiting to see the consultant I met another patient with one eye lost due to cancer of the optic nerve and who had had a cataract replaced on the remaining eye. He was so optimistic and positive. A very humbling meeting that put my current woes in perspective.
Great news Sapeur it sounds as if you did the right thing and found a goodun in your Consultant. Good Luck with your SLT. I agree, whilst not cheap, the money you have spent will give you more control of your glaucoma and bring more peace of mind to you.
This is interesting as, am very ignorant as to the option of having lazer treatment in stead of eye drops for glaucoma! It doesn't sound too expensive, as opposed to having to take eye drops for the rest of my life. I am on Lanaprost each eye at night and have now had Timolol added by consultant, 1 drop each eye mornings, these were monitored by pharmacist on commencing my treatment, timotol appear to be absorbed by the body with not welcome side effects am having some of these,including blurring of vision dry mouth tiredness etc. Would be willing to have lazer treatment if I can, I will explore the route for this, good if you update on yours when it's done, thanks for posting on here.
Hi Sapeur thanks for this it is helpful. So was it the private patient centre at the eye hospital you went to? And what was it that helped the doctor make the diagnosis as low pressure diagnosis can be tricky - scans? Or visual field? Or eye exam?
Can I ask why you chose Manchester over somewhere nearer to you? And yes please I’d be interested for the name of the specialist as I need to book in also
Eye exam, scan, field test. He noted that the optician had done a good job. The consultant also examined my eyes at great length, but did not repeat any of the opticians tests or add any new ones.I live in on a narrowboat and permanently moving. Currently in theNW. Manchester is relatively easy to get to from wherever I am. Sussex is my home county where my GP is. I'll go back there one day.
My consultant is Jonathan Yu. Details on the private patient section of the MREH website. Note: there are a number of equally qualified consultants but instinct is a weird thing.
I made a mistake on the fees. The full cost, for your information, is as follows:
Consultant fee £245.00
Hospital fee £369.86
Laser surgery (one eye) £350.00
Total: £964.00
It's a lot of money, I'm not wealthy and I have to find it, but I still think it's money well spent. As mentioned previously it gives me peace of mind and a base line moving forward. My SLT laser procedure is at 1230 tomorrow.
I am aware that costs for future treatment and consultations would soon mount up so, assuming my procedure is successful, I am keen to continue the monitoring process within the NHS. To that end I have now been referred by my GP (following a telephone consultation) and will await an appointment in 8 to 12 mths time.
SLT laser treatment carried out this morning. All fairly straightforward. A bit uncomfortable but pain free. 100 laser light pulses administered to the r/eye. Pressure prior to treatment was 17. After procedure it was reduced to 9. Consultant happy and I have a follow up appointment in two months.
Unless I have complications or anything changes I won't post again until my next appointment. I hope this has been useful for anyone going through a similar scenario.
Thanks for sharing your journey Sapeur. I hope you don't have any complications following your SLT and I hope too that your pressure stays down. All plain sailing (or chugging along) from now with no worries 👍
Will update you after my next appointment on the 18th March. I have had no complications following the SLT, however will not know if my pressures are stable until then.I've also managed to get an NHS referal via my GP to the same clinic (Manchester Royal Eye Hospital). Hopefully with the same Opthalmologist.
Overall, I'm happy with the way I have gone about things i.e. private - to get relatively immediate care and a certain amount of peace of mind that affirmative action brings, followed by future NHS referral - as this is obviously a lifetime condition that I could not afford to finance privately.
I had my two month checkup last week after SLT surgery on r/eye in January. All stable. Pressure of 10 in glaucoma affected right eye (from 17). 12 in the (currently) good eye. Consultant happy that the SLT was successful and is working. I've since been referred to the NHS and the expected consultation date is June which hopefully, time wise, fits in with the next round of scheduled monitoring.
I'm very aware of the deterioration in field vision in my affected eye. It's like a half moon shadow when I open my eye quickly in daylight. The brain then adapts and it 'disappears'.
I'm a lot more relaxed about my condition now. I'm over the shock, accepting of it and will make the best of a bad situation. Going private has given me an initial sense of control. I'm a 'doer' (some say impatient )and immediately wanted something done!
If you can afford it I highly recommend going private initially.
As a side note, my older sister had her eyes checked as a result of my diagnosis and she has early stage glaucoma too. So I guess always tell your relatives to get their eyes checked is another aspect of the disease.
Good luck to everyone in their own personal Glaucoma battles.
Thanks for the update Sapeur. Good news about your pressures and I agree with you, it is good to try and take control of your condition and if that means going private for a while then so be it. Good luck on the NHS with the monitoring.
It is some time ago now that I lost my peripheral vision; it is a wonder of nature how the brain adapts to the missing bits and it is so difficult to explain it to anyone who hasn't experienced it.
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