Update - OCT looking good

Hi all,

Had a review yesterday, inj still working and the OCT pic was wonderful to see!

Compared to the massive oedema which kicked off my journey its now miniscule. That was so heartening to see. My sight has improved a little too according to the chart (although not noticeable when reading at home), the permanent damage restricted to a very small area so far.

Consultant arranging another inj in the next day or so  (glad it was too late for one last night as it was the infamous dr doing them again , dodged a bullet there ha ha, ).

Good luck everyone x

10 Replies

  • That's great news, Eyesright.  Especially avoiding the infamous doctor.  How did you know who was on duty?  I never know until I walk into the ops room.

  • They have a board outside each room with velcro stick on name tags saying who is doing what - its quite nice really as has all the names of the team that day so as you get to know them and you see their names its a bit comforting before you go in ! Maybe a suggestion for your clinic?

  • Thanks for that, eyesright.  I haven't noticed anything like that at our clinic but I will check on my next visit.  What do you do, if it is someone you would not be comfortable with?  It's a week tomorrow and my eye is still sore and bloodshot.  I'm feeling more and more convinced that it is the person doing the injection that really counts.

  • Hi sophie, only you know how bad it feels but to be honest, it doesnt sound particularly out of the ordinary (you just seem to be one of those of us who get the aftereffects). I think if, like lots of us on here, you get the pain, grittiness etc etc you need to try the suggestions first  and see if things improve for you at all.  I know there are other posts on here about how people have dealt with the aftereffects, might be worth you trawling for them.

    Whilst the injector definitely makes a difference, Ive found the inj site does too (lower down is worse for me, top half has been almost side effect free), getting more anaesthetic helped, plus I take 2 paracetamol an hour or so before inj. The more Ive had (13 now) the more times its been better than worse. The bloodshot may be when they hit a blood vessel which  cant really be helped or it may be irritation which can be addressed. Aftereffects lasted a week for me at first but gradually reduced 5d, 3d, now its 24hrs at the most and sometimes none at all.  So I would say, give it a bit of time and try peoples suggestions - especially, talk to the inj team, explain your fears/side effects etc etc and give them the chance to help you.

    I think too the continuing soreness is probably dry eye so try some drops from the chemist.

    Having said all that, I was completely traumatised at my first inj.( you can read about it in my 1st post on this site lol)  I made  a formal complaint in writing and it was agreed with the clinic manager that I would not be routinely scheduled with that dr again - theres now a flag on my notes ! It was quite difficult to do given how vulnerable we feel knowing we have to have more inj and I would not have done it based on any other experience Ive had of the other 12 inj.

    Hope this helps, good luck x

  • Good Morning, some excellent news there and good timing!

    Cheers from The Smilers X

  • Such good news for you 😀 Which injection are you on ? I had my 3rd Eylea yesterday Sight down a bit so need another before my review perhaps. I agree about the more you have ... Also if course the skill of the dr my 45 th was fine and no blue bubbles hurrah 

  • Hi tallyho, I'm still a newbie, had 13 Lucentis so far, waiting on appt for 14th. Over how long did you have 45?

    Best wishes to you.

  • Good, encouraging news to read this morning Eyesright, especially when I feel totally wrecked myself after another disastrous visit to the eye hospital with my dear Mum. Can't imagine how she is feeling after the horrendous waiting yesterday and no treatment as the injection team had long since finished. Fobbed off by the consultant who insisted that as her condition was fairly stable they should try to increase the period between injections to six weeks.

    Wondering which hospital you attend as it appears they were running late and the infamous injector sounds possibly familiar to me too!

    I wrote a letter to the senior consultant last year to try to get some improvement in the treatment process and for a short time it worked:

    1. I was allowed to stay with Mum while she had the injection and was able to help by answering questions, getting her out of her wheelchair and onto the bed, and frequently repeating the instructions from the team as she has some short term memory problems. Last month she was aggressively taken away on her own again and I was given a lecture on the importance of the sterile environment.

    2. They promised she would be booked in for an injection at every review in case she needed one, which she usually does, to avoid the waste of time and effort of the long journey and hanging around, only to be called back in a week or so for the injection.

    3. They promised afternoon appointments only so I could get her there – nearly every time the injection appointments come through I have to ring up and change one as this doesn't happen.

    4. A doctor was put on the case to monitor the situation and be my first point of call for problems – his number just rings and rings, no answer machine and he doesn't ring back when left a note to call me.

    How can a teaching hospital at the forefront of this amazingly beneficial treatment be run so badly? There was absolute chaos yesterday and by late afternoon all the nursing staff could do was make people cups of tea. Appointments should have been cancelled when it was obvious at lunchtime that the schedule was completely unrealistic. Mum's appointment was for 2.50pm and we finally saw a consultant at 6.15, there was only one person left in the waiting room after us.

    Sorry, this probably isn't the place to have such a rant, but I do hope that hospital staff are monitoring this site and taking regular feedback from the Macular Society. I was left feeling that the consultant felt my Mum had had her share of injections and he didn't want to continue as the state of her eye remained the same. From my point of view that is a positive, the treatment works, her sight is being preserved, she can still see. That's a wonderful achievement and we are very grateful but why does it have to be so badly organised?

  • Oh rooky, i share your frustration! There is a complete lack of management ability. Couldn't organise the proverbial.

    Communication is dire, treatment scheduling seems ad hoc, at my clinic (Swindon) they are so short staffed everywhere I only just got the letter from January's visit 3 inj ago.

    As you say, the positive is that your mum is stable so it is ok the time is stretched as that is the aim- I would chase them though and not let it go too long (if I don't hear next week myself I will be ringing up!).

    Unfortunately I don't think any clinic looks at forums like this, the NHS seems very inward looking in many ways with no joined up thinking and has yet to recognise that we are in fact customers who have paid via our NI taxes etc.  Hey ho, at least the inj exist and we can get them.

    Hope you feel better after your rant, good to get it off your chest lol x

  • Hi there 45 injections over 5 years 22 left 24 right had avastin then lucentis now trying Eylea. Now have double vision due to such poor sight 1/60 in left eye but prism really really helps so if anyone gets this due to one eye far worse than other do enquire about it. 

    Rocky can you talk to PALS? my PALS were brilliant when I wanted something done.  There just might be others in the same situation, after my talk with PALS there was no ill feeling In fact quite the opposite 

    So glad Lucentis is ok for you eyes right I had 6 inj then stopped.

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