My mother has been having the Lucentis treatment for nearly two years and we are so grateful that it has saved her sight. However, there are several posts here that I can sympathise with entirely. Though I have not had the jab personally I know Mum well enough to understand if the procedure has gone OK, or not, and yesterday it went particularly badly.
I wonder if any of the pain issues experienced by others could be due to the injection causing a pressure spike as Mum had yesterday?
There is always a lot of hanging around and I know she was tired before she went in as I was too! Appointment time 2.45pm and getting called in at 4.20pm. For the second time in a row the nurse almost pushed me away from the wheelchair to take Mum in for the procedure, whereas before this I had been going in with her regularly to help get her onto the bed and comfortable. She has severe arthritis in both knees and finds it hard to walk much at all. Naturally she is worried about falling.
On these previous occasions, when I was allowed to stay for the duration, everything went well and we seemed to be out much quicker. The doctor was relaxed and cheerful and I believe his manner contributed enormously to her feeling of wellbeing.
Yesterday she emerged looking very upset and could hardly breathe the words "It's so painful!" that I didn't want to leave immediately. I went back towards the 'operating rooms' and expressed my concerns to the nurse who was looking after her. I was asked "how long she had been coming for the injections?" and, as this is nearly two years, she was very offhand and put it down to increasing sensitivity and anxiety.
As there seemed nothing more to do we left but fortunately bumped into a more experienced nurse/practitioner on the way out so I was able to ask for a second opinion. She was immediately concerned and suggested a pressure test which revealed the pressure in the injected eye had rocketed to 47 (it is usually about 15/16) and the other eye was 18.
Mum was given some paracetamol for the pain, a couple of diamox to reduce the pressure, an eye drop of lopidine and a very welcome cup of tea. I could not believe the transformation which took place in front of my eyes. In minutes she was so improved that she was apologising for making a fuss (bless her!) and even her sense of humour was restored.
After 30 minutes the pressure was checked again and it had gone down to 25 in the right eye. She was given another couple of drops of lopidine and we were allowed to go home. At 92 years old Mum was completely wiped out by this experience and I was shattered and upset too. My biggest concern, which I didn't dare ask as I don't think I want to know the answer, is what would have happened if I had left the hospital without having the good fortune to find such an excellent nurse?
The doctor who administered the jab was asked to prescribe the drugs for Mum and came to see her during her recovery. He had the audacity to put the problem down to Mum's anxiety and inability to keep still during the procedure!
I had to explain, as carefully as I could under the circumstances, that with her mobility problems and short term memory loss that there is quite a lot contributing to her discomfort in addition to someone approaching with a needle aimed at your eyeball. This is not pleasant for anyone to come to terms with but I strongly believe that the elderly need much more compassion and familiar faces/voices around goes a long way to keep everything more calm.
My request to be allowed to stay with her was rejected out of hand for my contamination risk as they have had a rise in infection rates. Not something Mum has ever had a problem with, thankfully. Conversely, they have decided to withdraw the standard use of blanket antibiotics for a week from the injection as they are rightly concerned about the overuse of this drug and the immunity people might build up against it with prolonged use.
I am grateful to this community for allowing me this opportunity to let off steam and hope that this will help others to stand their ground if they feel the injection has been too painful/more painful than normal. Maybe you should ask for the pressure to be checked before you leave the hospital? I have never known Mum have a problem like this before and she usually finds just going straight home to bed is the best cure followed by a quiet next day. It's uncomfortable, sure, but evidently nothing like the pain she tolerates with her knees!
It is an excellent treatment, probably a victim of it's own success if waiting times are anything to go by, but something does need to be done to help patients relax more so the procedure is over less stressfully and hopefully less painfully too.
Good luck to all you patients out there!
Written by
rooky17
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As you have posted over the weekend, you will no doubt be getting a very helpful reply from the Macular Society helpline shortly after the office opens! I suggest you ring and talk through some options with them as your mum has a few different issues. None of these should be ignored. I have had pain after injections and also increased pressure in the eye at first. I was subsequently tested for this before treatment.
At my hospital ( Gloucester Roysl) patients are not now routinely allowed to be accompanied by family or friends but exceptions can be made. I encouraged one worried daughter to insist she went in with her mum who had some dementia. She was allowed in.
Thank you Gill, and everyone else who has so kindly responded. You were right! So good to know there are so many understanding people out there.
Mum stayed in bed all day on Sunday and was still in bed yesterday afternoon as she felt so tired. It took a lot of gentle persuasion to get her to have a lazy bath and sit up for a few hours to watch the rabbits play in the garden. Hopefully, she will be feeling a bit brighter today.
I have almost finished my letter to the consultant and will suggest he takes a look at this website, if he is not already familiar with it. It is better than any focus groups they might think would be useful.
Sorry to hear about your mums dreadful experience at her last Injection Appointment.
Your feedback is so familiar and yes we are all so appreciative of the treatment that is available and yet time and time again, the issues of Local Policy, how patients are treated and what should be the simplest of things "empathy", are varied and often lacking.
We are still newbie's, my husband is the Patient and I am always there to try to give him as much support as I can. He says he is a Coward and we have now agreed on the term Blue Funk....... I communicate with people on this Forum, talk to the MD Society when required and provide endless support and encouragement whenever it is needed. It is in no way as hard as having the treatment and being the actual person who is worried about the loss of their eyesight. That said, I am a member of our local Surgery Patient Participation Group and I update them regularly on Mr Smilers treatment journey. GP's do seem to have little knowledge of this subject but members on ur group do.
Re your wait at Clinic. Our longest was 3.5 hours, a huge amount of time to overthink things. I managed to move our appointment slot to the first of the day and at a weekend. Too much for some people but we are now in and out in a pretty short time. Sorry to say this but it has been our experience that Theatre Staff are different every time and they do pass on very mixed messages re aftercare. Some are great, others are irritable when Mr S is in his Blue Funk! Last Injection there was a huge black blob and it would have been so easy to say it was an Air Bubble and would go within in a couple of days. Late appointment in our experience, we had staff who were clearly ready for home! The greatest support has been given by the regular clinic staff. We have directed a few queries when getting home to the Sister on Duty and found them to be reassuring and clear in the information provided. A couple of minutes and concerns are answered. Talking to people on this Forum has been invaluable.
Finally a huge thumbs up to you for the brilliant support you give to your mum. You are clearly a daughter in a million and a great advocate for mum.
You are too kind, your last comment brought me to tears, which probably helped to release some of the tension. Thank you. Do hope your hubby continues to respond to treatment.
I am so sorry to hear about your mother's experience at the eye clinic.
Whilst such painful episodes are fortunately rare, the more injections someone has, the bigger the chance of eye pressure increases.
Whilst we are not medically trained here, I suspect the drops administered after the injection to stop the pain are the same treatments used for glaucoma and are used to reduce eye pressure.
If she was OK later when the anaesthetic eye drops wore off, I can assume that she didn't get a scratched cornea?
The drops which used to be given post injection seem to be no longer given in many hospitals.
If you would like to have a chat further, please call our helpline 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).
Thank you for your reply. No I don't think the cornea is scratched. I will take you up on your offer of a chat when I can. Would you like a copy of my letter to the consultant? I don't want to post the whole thing here as it would duplicate too much.
Wait until you have had a chat with our helpline who can advise you if we would like a copy of the letter.
It would be worth having a chat with us.
Best wishes
Helpline
Macular Society
Hi rooky17, thanks for posting. I agree with others here, you are doing a geat job looking out for your mum x Vent away, it helps to get it off your chest !
I find the worst thing about these inj is that every one is different (very much depends on who does it) so its very hard to go in feeling relaxed like you know what is coming !
I too had a dr with a poor attitiude, have refused to have them again, wish Id made more fuss at the time and had my eye pressure checked - but it was my very 1st inj and I didnt know it wasnt meant to feel that bad lol .
The long wait you experience is crazy, my clinic are always on time ( but it does mean they usher you out quickly afterwards).
Being on this forum has highlighted how different the clinics are which surprises me.
We only get antibiotic drops straight after the inj before we leave.
I know the Royal College of Opthalmologists are reviewing their professional guidelines on the inj, it will be interesting to see what they say, maybe the macular society will report on it for everyone?
Thank you for the info. So interesting to know what is going on out there. I am thrilled that people are brave enough to say no to certain clinicians and will definitely be taking a leaf out of that book when I go with Mum next month, particularly if I don't get the response I want from the consultant. I suddenly feel much stronger thanks to this forum.
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