Had first Appointment Yesterday

[Lovemy2woofs]

So as previously mentioned in Jan at routine opticians visit , he referred me to eye clinic at hospital ( Moorfields Bedford ) as iop was 24/23 and narrow angle in left eye (15) right ( 35) . Field test normal.

Went to hospital yesterday had iop done had gone up 😢 26/28 .

Corneas are slightly thicker ,can’t remember both , but one was 577. I'm aware thick corneas can make iop slightly more raised , and some might deduct points from the reading , but as mine is only slightly thicker probably not in my case .

Had scan of optic nerve and angles and a field test.

Wasn’t told anything else , tried asking a couple of things but as just the staff doing the tests and they had 54 patients booked in for the morning , they kept saying the consultant would discuss , but then told would be notified by letter of results , phone call if it was urgent .So not sure how I can discuss things if getting a letter .

So a waiting game now till find out results and what they will be doing .

Felt really deflated that pressure has gone up , but glad to be seen and get things started .

Still very scared as terrified of going blind , and hearing so many having issues with finding right drops, surgeries failing and doing more or repeated ones etc.... so clearly the Glaucoma journey is not an easy one and seems to be trial and error , what works for one might not another and no guarantees and not knowing how long things may work for , feels me with dread .

Really hope that research in the not too distant future can provide treatment with good success rates and longevity , here’s hoping 🤞🏻

[Wales99]

Bless you. Yes it is disheartening when your pressures don’t come down. I’m on all drops known to man but mine is still at 22 (one eye). I’m due to have a trabeculectomy in June hopefully that will work. I would think that if they don’t think they need to do anything at the moment for you then you will get a letter but probably if they want to see you again then you will get a telephone appointment. Just my guess anyway- I’m no expert 😉. The problem with forums, etc is that people tend to share negative experiences rather than positive ones - we all do it, it’s human nature I think. Like you say, everyone’s journey is different. Good luck & keep us posted 😊

[Lovemy2woofs in reply to Wales99]

Thanks. Yes very true , people tend to join forums if needing support , presume if everything is going well , a lot wouldn’t join unless wanting to help others or have a real interest in it .

[Jennymary]

I find the remark from the staff about they've got 54 patients to see really bad, my advice would be tough, I'm newly diagnosed, scared, I know you've got a lot of patients but I'd like to know what this test is for, I'm sure you can appreciate that it's the consultant who has the final say on your treatment plan, but to not give any reassurance to you and any other patients newly diagnosed is really poor

[Lovemy2woofs in reply to Jennymary]

Sorry for any confusion , The staff didn’t say about 54 to me it was written on the notice board in waiting room . Staff were nice and friendly , but a couple of things I asked they just said consultant would discuss with me. I am not yet diagnosed , this is my first appointment at hospital and was having all the initial screening tests .

[Jennymary in reply to Lovemy2woofs]

Apologies, I've just had my first day back at work for 4 months since lockdown, got frazzled brain, think you said you'd get a phone call or letter, if you don't hear within a week chase it up, I wish you well

[Hidden]

It's positive you have at least had your first appointment at the eye clinic and that tests were carried out, hopefully from there your consultant will soon begin your actual treatment . It is however a horrible feeling when your pressures go up and waiting for test results is never pleasant.It's totally natural to be scared at the beginning but once the consultant finds drops that stabilise your pressures you will hopefully feel less so. Unfortunately there's not a one size fits all with glaucoma treatment. You will find your own way of dealing with all this in time.

Fingers crossed you get your results soon along with an appointment to see your consultant.

Take care.

[Lovemy2woofs in reply to Hidden]

Thank you x

[Sunshine8888]

Bless you! It’s so good you are now in the system and please believe me when I say there is always help at hand. I will never forget being told 20 years ago about my condition, taking it in was such a shock! Between the hospital and Glaucoma U.K. there will always be someone to talk to and that is so important to share how you feel. Only in recent months have I experienced problems with appointments and medications however as I said I spoke with the hospital, the nurses were great, and I have spoken to Glaucoma U.K. they too were brilliant. I drive, look after three very lively grandsons and as well as my very elderly mother and travel when I can, just have to make sure I take my drops on time and correctly. I am so grateful my condition was diagnosed and I’m in the system although at times I agree there doesn’t seem to be the time just to share concerns with the consultants and that’s where this forum is such a support. All of us understand what you are experiencing and we are here to support each other with professionals at hand if we need more technical advice. So keep chatting to us all, I’m back for a third visit to the eye hospital since Feb, first blip in twenty years, guess my eyes just want some new meds! Take care x

[Lovemy2woofs in reply to Sunshine8888]

Thank you , glad to hear yours have been under control for a long time , hope you get sorted with your recent blip xx

[RoyBen]

I went to same place on 9 Feb. There was no face to face with a consultant which was disappointing. Administration was a bit slow in sending out letters but one arrived from consultant dated 12 Feb, it took over a week from date of writing! My GP was emailed a report and the GP's receptionist kindly sent it to me when I telephoned. I ended up writing to the consultant with my questions and duly got a response.

I would give them a week or so to respond and then chase by telephone, your GP and Moorfields.

My sister had high IOP like you. She was living in Kingston at the time and referred for laser treatment. On her last visit to Stoke Mandeville she had a discussion with a consultant and was told she did not have glaucoma. Like me, she is being monitored.

Good luck.

[Lovemy2woofs in reply to RoyBen]

I knew wouldn’t see consultant as said that in the leaflet , as was doing all the tests , but as like you say if just writing to you how can you discuss stuff . Plus I want to see my scans etc... I much prefer a detailed discussion as I find it interesting too. It’s probably due to over prescribed with patients , long waiting lists and worse since Covid , so can see things being more about less time with consultants .

It was busy yesterday , but not like it normally is as people forewarned me you can be there hours .

My appt was at 8.20 am , there was 6 of us initially , but as time went on would say there was about 15 .

Run out of seats at times as most were taped off .

Staff were nice, but it was very much a conveyor belt of in to one staff for one test, back into waiting room, then another test with different staff, back into waiting room and then the final test , then go home. Was there two hours.

Yes good idea Re the GP , though getting hold of them is just as bad lol .

Wishing you well in your journey too x

[Beecalmed]

Oh bless you! Don’t lose heart! I know it’s hard to stay positive with all that’s going on and lockdown impact too. It’s true the consultants are very busy but if you have questions call and speak to the consultant’s secretary and sometimes they can pass on questions and get answers for you. My secretary is really helpful. I do try not to abuse her help too often but secretary’s are a key route to the consultant during COVID. She just helped advise in sourcing drops when my chemist couldn’t get mine. Really helpful practical stuff. Yep! My IOPS have fluctuated a lot high... then low... then high... then lower again sometimes in space of few months. Ive got used to managing my expectations a little before my pressures are taken and trusting my consultant will act if they are higher than ideal. If they’re high and your consultant thinks that’s a problem they will change your drops or suggest something. On the thick corneas, nut advice is stay motivated to understand your diagnosis but try not to let it take over. I’ve gotten very low sometimes and railed at the world and everyone, but it doesn’t help me it just raises my blood pressure! 😬 I woke up one day and decided if I was losing my sight I’d cram in all those things I love to do but put off because they need good sight. I’m now a beekeeper, I make my own clothes, read a lot of books, drive as much as I can (before they take my license), stand on hills or by sea enjoying distant views (lockdown rules permitting). My glaucoma diagnosis so far has turned out to be a great enabler! 😂 Who’d‘ve thought it?! Not me 3 years ago that’s for sure. Turns out most of the things I do can be done perfectly well with little sight anyway (though possibly not driving). Though we’d all like to keep our sight I reckon. And yes research is going on out there that is looking at protecting or restoring those nerve ganglions so who knows what’s around the corner. 🙂

[Lovemy2woofs in reply to Beecalmed]

Thank you for your lovely reply. Oh bee keeper , bet that’s fascinating , got to love our bees .Wish you well in all your endeavours x

[Hidden]

Hi how are you feeling today. It’s all so scary isn’t it. I’m like you worry so much xx

[Lovemy2woofs in reply to Hidden]

Ok thanks Julie . xx

I’m trying to be realistic as nothing I can do , I’ve got to wait to see what the say. But every now and then I get this feeling of dread wash over me . I think once I know, might feel better in that sense , but I think like any of us having a Glaucoma diagnosis is scary .

I handled being told diabetic much better , that was 16 years ago , and I’ve had cancer when I was 31 , coped with that diagnosis back then I felt more supported by NHS . Now all we hear is about these terrible delays and back logs .

On news today they were saying 4 million waiting for treatment, it’s heartbreaking .I think that as well is making me anxious as we know we rely on getting seen with this and we are not out of the woods yet with Covid.

Really hope for us all that things will get better .

[Hidden]

You been through so much. You will get through this. I did see the news it’s so scary x

[sewquilt3]

Hi I think we are in similar situations. I had my first appointment at the eye clinic last week and can't exactly remember what was said so waiting for the letter that is going to the GP, not entirely sure if I have a diagnosis of glaucoma or something else???. I did see a consultant and have started on the monopost drops and have to go back in June. i hope you have been able to get some answers.

[Lovemy2woofs in reply to sewquilt3]

Thank you . Hope you get a copy of your letter too x