AMD - Cancelled Injections, Sight Deteriorated, Visit Hospital VS Covid19

[ColinKin]

Hi

Mum is 90 years old with Glaucoma and AMD

Her sight has deteroriated in last 4 weeks. Trying to weigh up the risks of not seeing a specialist VS risk of Covid19.

She has a lung condition - hence is very unlinkely to survive covid19

She was diagnosed with Glaucoma and AMD about 4 years ago

Taking drops daily for Glaucoma

Been receiving injections for about 3 years - last appointment (27 March 20) cancelled due to Covid19

For last 3 years she has managed (with glasses) to see reasonably well eg watching TV, reading letters, doing word square puzzles.

In last 4 weeks her sight has deterioriated greatly.

It is hard for me to describe what the change is but will do my best.

It appears that she has lost focus on everything over whole field of vision (not center or perifory).

She cannot read any letter with glasses or magnifying glass.

Her current glasses are probaly 3 years old.

She can see a person from 8 feet away but cannot tell if it is eg Me or My brother.

Watching TV she can see the shapes of people but not who is on screen.

She can still saftely walk in the street (with her walker).

=====

Whatever risk there is of getting Covid19 during a hispital visit, I feel it will not change in the next year.

Any guidance appreciated on:

What might have occured over 4 weeks?

Might a new sight test and glasses help? (Don't think that is available at present)

Is deterioration likley to be permenent or might some treatement reverse the current condition?

What are the risks of receiving no treatment (including her injections) over next year?

I realise only she and family can decide to take the risk of going for treatment, but if we can better understand the possible consequences of not getting treatment this will help the decision.

Thanks ColinKin

[Koalajane]

Hi, I have macular oedema and have injections every 4 weeks. My last appointment was nearly 2 weeks ago and it was very carefully monitored for this virus. As I arrived I was shown the hand sanitiser and masks. I had my temperature taken before sitting down. The waiting room chairs were well spaced out with notes on chairs saying do not sit here. There were less patients than normal as it is only for review and injections. All staff were gowned with masks and gloves. In the waiting area for the injections, which is a smaller area, there was more sanitising gel and chairs spaced out. I think at the most there was 4 patients waiting.

I felt completely safe and not at all concerned about going for the next appointment.

Does she have cataracts?

My feelings are that your mum should go for her appointment especially if her sight has deteriorated so much now.

[ColinKin in reply to Koalajane]

Thanks for sharing your experience.

She does not have cataracts.

Her injections are not as frequent as monthly.

I am inclined to agree that she should go (if she can get an appointment), but keen to hear of medical causes if she does not.

[springcross]

Hi Colin. I pretty much agree with Koalajane. My last visit to the hospital was on 2 April for my injection. Hardly anyone around, notices on chairs, I was asked to wash my hands when I went into the injection room, hand sanitizers around, nurses and doctor wearing masks etc. The only things I had to touch were the lift button (for which I used a clean tissue) and a tap. The doors were automatic anyway and nurses etc were keeping their distance and everything was very clean. I also agree that your Mother should go for her injection seeing that her sight has become that bad. You could always contact the Macular Society on Monday for advice, they are very good. The telephone number is below. Good luck and please let us know how it goes.

Macular Society Advice and Information Service

0300 3030 111

[Hidden]

Hi Colinkin, is your mum of sound mind? If so, then the decision should be entirely hers. It's her quality of life that she alone will be living . No one else will be inside her head experiencing the world through her eyes and other senses.

I have carer responsibility & health& welfare poa for a mentally disabled relative - the core principle of which is still, as far as is practically possible, to allow him to live the life he chooses. Even if the choices he makes are not necessarily the ones I would make for him. It can be hard.

Having said that, it's good to give your mum as much info as possible to enable her to make her decision/ make her views known so you are doing the right thing asking. The macular society are probably best placed to give you " official" advice.

To me it sounds like her wetmd has worsened dramatically, or the gaps between previous inj have not been so long and so it hasn't been so noticeable before. It's possible her glaucoma drops may need reviewing too.

From my own experience of 6yrs of treatment I would say the key thing is that any current sight loss is not necessarily recoverable by treatment and the longer it's left the less likely it is.

Although the inj have helped me enormously I ( and others here) have suffered permanent damage to varying degrees when the time between went too long.

It's particularly difficult when you have both glaucoma and a macular condition ( I do too) and so I think contacting the eye clinic emergency number is vital.

Everyone has their own take on what makes life bearable. I understand you dont want to risk losing your mum given her other health issues etc but the hard question is would she be happy alive and totally blind ?

From everything I've read here and elsewhere, and seen at my own clinic, the clinics are being very well run regarding covid19 safety protocols .

I'm assuming you could drive her there and back so no public transport issues?

I would say as long as you cover your own face (so as not to breathe on her as you may be a carrier), let her cover her face too if she wants, and both scrupulously wash hands properly (there's a post on here about that) and repeatedly after touching anything outside the home, dont touch your own faces while out to minimise chance of contamination, and until home again ( where hands should be washed again!) then the risk is very low.

Good luck with whatever she/you decide. You're a good son!

[MikeG1944]

I agree with eyesright; the longer sight problems are left the less chance of recovery. I went a few weeks ago (after one cancelled appointment) and the cleanliness and extremes they went to to make if safe were extremely good. It was probably safer in there than walking the streets and certainly better than going into a supermarket. Nurses and doctors were in the PPE and they suited me with a mask for when I was near to any of them in a room. Big waiting area was empty except for 3 of us well spaced out. I would think it wise to have the eyes checked than let it get worse. Mike.

[Brode in reply to MikeG1944]

I quite agree.

[Brode]

It was very safe at the hospital when I went for my injections this week. They are not cancelling injections as they are essential if you want to keep your sight. Once sight lost it won't come back.

[JJnan]

My last injection was Fri 24th I have monthly inj which havn't been cancelled, as far as your Mum and worrying about visiting clinic, my clinic only has 4 in waiting room, the distance is about 12 ft...nurse/Docs wear masks/gloves , and there are shields on all scanning equipment, I wash hands before and when I arrive and when I leave and when I get home ...i agree with what others have said ...ring emergency eye clinic and explain ...and perhaps a visit when your mother is ready to optician fir new glasses....good luck xxx

[RosMacularSociety Partner]

Dear ColinKin,

Has your mother been diagnosed with AMD in both eyes? If so, which type? i.e. dry as well as wet AMD?

If she has been diagnosed with wet AMD in one eye only previously, then there is a 50% chance of developing it in the second eye within 5 years.

At present, it is the root cause that needs looking at versus considering changing glasses etc.

When an individual initially starts injections for wet AMD, then occasionally there can be a slight improvement in vision within the first 2 or 3 injections, but this is very variable. The main function of the injections is to suppress the abnormal vessels that are developing behind the retina, maintain vision and prevent further damage. Without the injections, there is a danger that permanent damage can result in the form of scarring. Scarring cannot be reversed. The worst case scenario is central vision loss. Central vision is responsible for seeing faces, fine detail and colour perception. Individuals usually retain their peripheral vision but this is dependant on whether e.g. their glaucoma is under control.

The NICE guidelines for the treatment of wet AMD are that from initial diagnosis to treatment should be no more than 2 weeks. After this time, there is an increasing chance of permanent damage in the form of scarring occurring.

When an individual is already having injections, then it is important that none are missed, as otherwise there is nothing to stop the eye from deteriorating. At present, treatment for wet AMD is still going on. It is worth clarifying why the injection was cancelled. It may have been that they were about to issue another one. It is important to chase this appointment up e.g. via your mother's ophthalmologists secretary.

These links may be of help:

macularsociety.org/sites/de...

macularsociety.org/sites/de...

macularsociety.org/sites/de...

macularsociety.org/sites/de...

In addition, these are some links related to Covid-19 and treatment for wet AMD:

macularsociety.org/coronavirus

macularsociety.org/injectio...

sightadvicefaq.org.uk/indep...

It may be easier for you to contact us directly for further discussion.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,