I was so upset yesterday after my telephone follow up phone call from the hospital. Basically the person talked at me, saying I was ok, it was like a reading from a script. I had to interrupt and ask if it was possible for me to speak on three occasions. One of my questions was regard to driving, to which he said if you feel ok then that’s fine but don’t lift any shopping followed by a laugh. When I asked about pressures he said within a year I would be called back. As for my floater question, he said that’s fine, to be expected, no problem, and to my blurred vision again sometime in next year I’ll be checked. When I pushed him on the driving and said I wasn’t 100% confident and wanted to know should I keep taking the three types of glaucoma drops he said I should wait until seen by the clinic which should be by next August and not drive! By this point I was really upset, he said I was to phone appointments as he was unable to deal with appointments. By this time he knew how upset I was feeling, however phone went down. He then called back and said I would be seen in the next week as there was a cancellation! Followed by do I realise how lucky I am to be seen, yes I do and you all know how highly I regard the NHS however on this occasion I was left initially confused and very upset. Sorry this has been a bit of a rant and I’m sure everything will be fine! The sun is shining and my two beautiful grandsons are coming to play! Have a good day everyone 😊
Telephone follow up conversation : I was so... - Glaucoma UK
Telephone follow up conversation
4 yrs ago when I was going through my 3rd oedema I asked the consultant if I was OK to drive, her reply, when you can read a number plate at the required distance, so when weather conditions are good yes you can drive but not when weather conditions are bad, I stopped then because I was a sensible driver, at a subsequent appt she kept pushing me to have tube surgery which I'm very much against, and the same consultant said, Jennifer you should be grateful for my time as my list is full to overflowing, she took over my case on one of my many visits to A & E, enjoy your day with the grandchildren
Sorry to hear how the telephone call went. Must admit thought it was a bit strange to have a follow-up ever the phone after your op, especially as you also have glaucoma. How they can assess if all is OK via the phone leaves me bagged! I was seen a week after my op at the eye clinic and have another appointment next Monday as the pressure had gone up in left eye. Mind you they also talked at me or discussed me with a colleague as if I wasn't there and I had to keep asking questions. It seems to be the way they are nowadays, which only stresses one out more really. Hope you get on OK next week and get better answers to your questions. Enjoy your day with the grandchildren and sunshine. x
Hello Sunshine, so sorry to hear how the phone call upset you. Sometimes it is so hard to get information and to know how qualified the person on the other end is.
At my hospital there are two tiers of clinic appointments.
One tier is staffed by opthalmologists with extra training to do eye examinations. I went to that clinic for many years. When they had done their examination it had to be sent to the 'upper' clinic where decisions were made as to eye drops or operations etc.
I am now attending the 'upper clinic' for my appointments. I wonder if it is the same where you are?
I wonder why you are really against a shunt operation. I had one 3 1/2 months ago. Eye drops hadn't been controlling pressures and I had started to have a gap in my field vision test.
It has been a success, lowering my pressure from 21 to 10 in the operated eye.
There are different kinds of shunts depending on how much you need your pressure lowering. I did a lot of reading up on it before I had the op.
I have had many side effects from eye drops over 20 years, one (Dorzalomide) causing severe contact dermatitis so am pleased that I will no longer have to take eye drops in that eye.
With regard to floaters, I had them years ago but it cleared up after a couple of years. Maybe there are different reasons for floaters but mine were caused by the 'jelly' in the eye becoming detached.
Oh Sunshine I am gobsmacked by your post and I can understand fully how upset and frustrated you must have been. I'm sorry but telephone consultations after an operation is not acceptable and it never will be. The person you spoke to was obviously completely lacking in every way and should be rethinking his career choice. I am so glad you have an appointment for next week and there is no way you could have waited till next August. I am so cross on your behalf.
Enjoy your day with your lovely grandsons and big hugs x
What an insensitive person! Sorry to hear of your telephone experience Sunshine - I think he must have realised how abrupt he was which was why he rang you back. Just tried to text you but the message didn’t go through. I hope you are now enjoying the lovely weather with your grandsons xx
Oh Sunshine8888 bless you. I’m so upset reading this. You are an inspiration to me and it’s awful you have been treated this way. Have you recently decided not to drive because of the new floaters that came. This person had no right to speak to you like this. Yes we all know how highly you regard the NHS. I so hope next week goes well for you. What did he mean don’t carry shopping. Don’t worry about your rant you can rant as much as you want we are all here for you. Try and relax a little in the lovely weather with your gorgeous grandsons. Take care lovely lady. Sending hugs and will chat soon. Xxx
Bless you. That’s awful. I was having a conversation recently with friends about how Drs/Consultants won’t commit to anything anymore. You ask a question & they put it back on you. Unfortunately they are so worried about being sued but that’s no excuse. I’m glad you have got an appointment now. Hopefully the person you see will have better people skills. You hang in there lovely. 😊xx
Bless you I’ll let everyone know what happens Friday, thank you for your support x
Hi how's things with you ? I may have the date wrong but is it tomorrow you have your neurologists appointment. ? If so I hope it goes well 🤞x
Hey! I’ve been trying to reply to your message for the last 20 minutes- it wouldn’t load. Had to log out & in again flipping technology 🙄. Yes spot on - you have a very good memory. I went back to the gym today for the first time in 10 months- it was nice to drive again but I got a migraine (that’s how they started - post exercise) I’m hoping that the neurologist can come up with a solution. I’m back on propranolol but it isn’t stopping the post exercise migraine obviously. It’s been going on for five years now - I’m about ready to jump off a cliff. The other thing that’s been going on for the last five years as well of course is the good old menopause so I’m seriously considering HRT. That’s a different forum though 😉. How’s things with you?
Och I was writing a reply to a private message and it went somewhere else , I hate technology 😫.I'm pretty good with dates most of the time.
Oh that's not good that you had a migraine after your exercise, especially as you hadn't been able to do any for so long. It surely can't be your eye pressure as it was lovely and low at your last appointment but there's something going on somewhere that shouldn't be. I really do hope the neurologist has an answer for you as you say it's 5 years now, far too long. It would be totally driving me crazy by now, well more crazy !!!!
My friend gave in at Xmas and started on HRT as her mood swings were so awful and she felt so down all the time. She tried all sorts of natural remedies and nothing work but HRT has transformed her life much to the joy of her husband and children.
I'm good thanks.I just really want a date for my trab now so I can plan as at the moment I feel in limbo. I would love to go away for my birthday at end of October but I don't really want to book anything just in case. I am just writing this year off I think and I will start afresh in 2022 😂.
Let me know how you get on tomorrow and 🤞 the neurologist knows his stuff x
Ha ha! Yes I know what you mean about technology. I have seen this neurologist before- he prescribed antidepressants for the migraines & referred me to the ophthalmologist who took me off them because he said the headaches were almost certainly due to the Glaucoma. Then next time I saw him he said they weren’t related 🙄. However the migraines got better with the Glaucoma meds although I still got them after exercise. It obviously isn’t eye pressure though because I’ve had them daily since the op & like you say my pressure is good. The problem is that most of the preventative medication for migraines either lowers eye pressure or raises it so I’m a bit limited on what I can take which is frustrating. We’ll see what he says.
That's a bit of a nightmare as you really can't have anything that raises your pressure not after your trab has been so successful. Let's hope he has some other ideas tomorrow or maybe a second opinion is needed. Why is nothing ever simple ? X
Exactly but I’ve been googling (yes I know 🙄) and there are quite a few other drugs you can have that are OK with eye pressure. I will see what he says. The best thing would be if the neurologist & the ophthalmologist would talk to each other but they won’t do that - no joined up thinking.
Yes the best solution would be a consultation between them but you are correct the odds of that happening are extremely remote. By really why can't they just confer with each other. Oh no not Google!!! No it can obviously be useful in certain circumstances. Maybe he will surprise you tomorrow, I hope so x
The trouble is that because they won’t commit themselves to actually giving you advice you are forced to turn to the Internet which isn’t ideal. I will let you know. I looked for a forum on here for menopause/migraine but it seemed to be American & the views were very different to how we see things in the UK. Of course the healthcare in the USA is very different to here.
At the end of the day it's their blinking jobs and you are the one who is suffering due to their indecision and reticence to commit themselves, it makes me so cross. My partner got sent to an actual migraine clinic and saw a specialist, is there anything like that near to you ? Though they never got to bottom of what triggered his and his symptoms are so different to my migraines neither of us are convinced it actually is a migraine.
That's a pity migraine/ menopause forum not UK, America is very different indeed. X
I think there is a headache clinic at Guys Hospital in London that I could get to. This is only the second time I’m seeing this neurologist and as it’s private he may suggest something like that I suppose 🤷♀️ Goodness knows. I am going to stress how much this is impacting my mental health as well in the hope that might shake him up to do something! Migraines can be very different in people obviously but it does make you wonder- if you have a family history of migraines then they just immediately put it down to that.
Yes definitely let him know exactly how negatively it is impacting your life and maybe he will do more. My migraines are just text book whereas my partner's anything but. If he has no idea he should refer you on but with luck today will go well and he won't have to x
All went well. He was actually very nice & very thorough. Also empathetic. He thinks it is highly likely to be hormone related. I have always had problems in that area (hormones) my depression is hormonal. He is going to write to my GP & ask her to prescribe it. If that doesn’t work then he is going to ask the GP to prescribe another drug after checking with my eye consultant that it’s OK. He said there are still quite a lot of options. He said if neither of these drugs work he will recommend me for the monthly injection that you can now have - I think you said your partner has those? So all-in-all I’m feeling fairly positive. At least he didn’t just fob me off.
Oh brilliant that's great I'm so pleased he listened and understood, what a difference it makes to have an understanding consultant. It's also good to know there are other options. Yes my partner has injections, he takes them himself and they definitely do work,they are very expensive and I think that's why it's a final option. I'm really happy for you x
Yes I had read up on them but I didn’t tell him that! They are expensive & you have to have had 3 other options fail before you can have them. Well hopefully one of the other options will work!
I was just telling my partner about your migraines and criteria for injections and he reminded me he had medication and nasal drops first neither of which worked and then the injections. I had forgotten about the nasal spray . Yes hopefully one of the other options will work for you. X
Yes I think it’s very expensive also relatively new. My consultant said he was just in the process of setting up an NHS clinic for it. I’m glad your partner got his under control. Migraine is the worst- it’s so debilitating.
That's positive that's he setting up an NHS clinic,I'm sure so many people will benefit from it. If he can get your migraines under control it would totally change your life . X
Hi Wales99 how did everything go at your appointment. Xx
Ummm. Which appointment? I haven’t had an eye appointment for a couple of weeks- next one is in December. I’ve just had a neurologist appointment for the constant migraines & that was really positive. How’s things with you? Xx
Ahh that was the one the migraine one. Glad that was positive xx
😂. My life revolves around hospital appointments these days! Yes the Neurologist was very nice & empathetic. He’s going to try different drugs and hopefully something will work! 🙏. Xx
Ahh I’m glad he was very nice and going to do his best for you with other medication x
It’s awful , we all just want someone with experience and understanding to talk through our issues and feel we are getting the best treatment . It really is a lottery to how we get seen .Some on the forum have faired better , others not so .
It just seems to me eye departments are understaffed and there are lots waiting for treatments etc....
It now seems some hospitals are doing more virtual clinics and calls etc..,, with consultants only seeing more complex or interesting cases and just reviewing others online .
Sending you a big hug, at least on here we all can listen to each other and support where we can .
Good luck on Friday x
You are right about understaffing Lovemy2woofs. It was bad before the pandemic, now it is worse. I remember being told 3 years ago that 'there are too many of you and not enough of us'.
I have so much respect for all those doing their best in the NHS however we are at the end of the line and sometimes just need the correct advice without having to second guess what we should do about medications etc. Thank goodness for the support of this forum and Glaucoma U.K. x
Aw Sunshine, I’ve just got your post, a big hug to you. What a horrible person you had to deal with, absolutely no need for people to be treated like that. I would be having a word with the Consultant when you’re next in. I don’t know where these hospitals think a phone consultation is ok, disgrace. I’m so pleased you got an appointment for next week, lucky what a cheek, he needs to learn some personality skills including empathy. I get so annoyed when people are treated badly. I hope the rest of your day was good especially with your grandsons visiting. I hope all goes well with your consultation next week. ❤️❤️❤️
Thank you so much for your support. It wasn’t a good experience hopefully Friday will be a lot better x
I'm adding my sympathy in relation to your recent experience. I feel to have been very lucky in terms of the consultants I've seen through my recent surgery although how long I'll be seen at that level remains to be seen. Is there some way you can provide feedback on your telephone consultation? I hope your appointment next week goes much better. The sun isn't shining here but I also have grandchildren- two beautiful granddaughters- so know what a consolation they are, especially now I can see them properly again!
Ah bless you thank you so much for your support x
So sorry to read about what happened. I do sometimes wonder about the training they've had in how to speak to a patient. If you hadn't said 'he' then I would have assumed you were talking about the optometrist I saw post surgery. I hope that all goes well in your next appointment and that you get some clearer answers to your questions.
Thank you for your support off to the hospital this morning x
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