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!