Just diagnosed and so worried and confused - PMRGCAuk

PMRGCAuk
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Just diagnosed and so worried and confused

BigJ
BigJ

My aunt has just been diagnosed with GCA due to completely loosing her sight suddenly a few days ago. We are so worried as no one seems to be able to confirm if her sight will return at all. Does anyone have experience of this? She has been advised to get a second opinion from the Morefield Hospital, does anyone have experience of this? Any help will be so helpful as we are holding onto hope and want to be able to support her as best we can. TIA.

15 Replies
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Oh gosh, that must be so frightening for her. There are people on this forum who I hope will reply and I’m sure they will as they have direct experience of. So sit tight. I sincerely hope that your aunt has been prescribed high dose steroids while opinions are being sought, this is essential.

Oh dear I hear the fear and panic in your post. You must know how wonderful and precious your support is to her. The aunties and uncles will be here soon to advise hold on and keep being strong xxxx.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi BigJ,

Sorry to hear about your aunt, both she and your family must be devastated.

I cannot say whether her sight will return, it very much depends on how much damage has been done to her optic nerve (fed by the ophthalmic artery). She may be lucky in that it’s only temporary, but I think you should be prepared for the worst.

I lost the sight in one eye permanently almost 7 years ago through a late diagnosis of GCA.

I presume she has been started on Prednisolone at around 80mg.

This is a link to RNIB website should the worst happen -

rnib.org.uk

Please let us know the outcome. We can & will supply further information about GCA if you wish, but get over the immediacy of her sight first.

My heartfelt good wishes to you all.

BigJ
BigJ
in reply to DorsetLady

Thank you so much for your kind words of support. We (and she) are beyond worried. She 84 but in all other respects fit, active and healthy - yoga everyday, cycling and driving. Her loss of sight came suddenly and without any warning. She’s being so brave but life has changed and may never be the same. We are holding out hope but also trying to be realistic. It’s just so sad and awful for her to be robbed of her sight and independence. I really hope others in this forum aren’t going through such extreme symptoms xxxx

DorsetLady
DorsetLadyPMRGCAuk volunteer

Will message you in the morning if you don’t mind.

Is she now on a high dose of prednisolone? As others have said, it is very important. All the best.

Very sorry to read this. I have no knowledge to add about GCA but you did ask a second question, about Moorfield Eye Hospital. It is world renowned and a leader in its field so at least she is seeing the best people. I hope they can help your Aunt.

PMRpro
PMRproAmbassador

I'm so sorry to hear this - it is something that happens to a small number of patients, they wake up and vision is gone despite there having been no signs or symptoms beforehand. Any sudden loss of sight like this should be treated immediately with very high doses of steroids - just in case it is GCA although there are other causes of sudden loss of sight.

But since you say this happened a few days ago I'm afraid there isn't much hope I can hold out to you if it is GCA she has - even if the loss of sight is only one eye, the chances of the other eye going within the next week or two is very high and once vision is gone, it is gone. The damage is to the optic nerve which takes the signals from the back of the eye to the brain and nerves rarely heal.

What are they basing their diagnosis on besides the loss of sight? Where are you?

I can fully empathise with how all of you are feeling, My mother lost her sight completely to GCA just over 2 years ago when approaching 83 - another very independent lady. Your Aunt will go through a grieving process and in hindsight I wish I had encouraged my Mum to have some counselling. There are charities who offer this both for the person who has lost their sight, and the family supporting them. We support Mum to have as much independence as is safe and build confidence by doing things herself (it will take time)- I was amazed at how well my Mum adapted. Never a reader, she now enjoys audio books - still follows EastEnders with the aid of audio-description on the TV and loves going to musical concerts and listening to the outdoor sounds. We try to keep her positive and have things to look forward to. She has a "reader" for her mail - it takes a photo image then reads back to her. If you have any questions please fire away as I would be very happy to help x

What a rotten thing BigJ ! If she does indeed have GCA, she almost certainly won't get her sight back. I lost one eye to it about 15 months ago - and dread losing the other one. Hence my willingness to thake the beastly steroids.

I see that you have DorsetLady (who has also lost an eye) on board, as well as the very knowledgeable PMRpro. Do listen to them.

I thought that Perry1 above had some really useful and constructive thoughts for your aunt's future, based on his/her experiences with her/his Mum. Your Aunt is likely to need a lot of close cuddling for a while - you sound as though you are up for the job.

All my best wishes to her - and you

Arthur

Thank you everyone, your support and advice has been a huge help. She’s doing well, all considered and seeing the consultant again on Wednesday. I’m worried that she hasn’t yet understood that her sight loss is almost certainly permanent. She’s asking for a referral for a second opinion but the more we research this and the advice we’ve been given is that her sight won’t return. She’s in the system now and we’ve had a call the sensory team who will come out and teach her independence skills. We are also waiting for her to be assessed for a care package. It looks like she will need to sell her house and move into some sort of care home close to us, as me and my partner both work and she can’t be left alone at our house - really not appropriate for an elderly person with no sight. She’s remaining so strong, shes an inspiration - currently listening to the racing on ITV!

I can’t thank you all enough and I’m so sorry to hear about the challenges you face with this condition. Until New Year’s Day I had never heard of GCA - good luck to everyone, I really do hope your symptoms improve. We now have a long road ahead of us, helping our aunt to learn how to live without sight xx

PMRpro
PMRproAmbassador
in reply to BigJ

If you are in the UK, the RNIB are wonderful. All the very best.

I’m my experience people tend to ask questions when they are ready to hear the answer, even though it’s upsetting to hear the truth. If you try to force the issue it may fall on deaf ears or not be believed. However, this is all well and good if time is on your side and your hand isn’t forced by having to discuss practical issues. When people lose a limb or a sense you get periods when the person is a real trooper, then the other times they lose the plot, like waking from a bad dream to find it’s real. A second opinion may help but time will tell all. The thing is putting one’s own feeling to one side so as not not force the issue because it becomes unbearable. You have such a lot to deal with, hats off to you.

BigJ
BigJ
in reply to SnazzyD

Yes at the moment she is definitely being a real trooper but I’m bracing myself for the inevitable plot loosing as her current troopering just doesn’t seem sustainable. People have described the sightbloss as a bereavement and I can only imagine how true that must be. Today I heard her tell her sister that she feels trapped in a nightmare. We will read carefully and be guided by her.

HeronNS
HeronNS
in reply to BigJ

At one point I thought I would be a volunteer with CNIB cnib.ca/en?region=ns

and although that fell through I did learn how very helpful such an organization can be for those who have lost or are losing their sight. Whatever is your equivalent organization they can help both your aunt and the family.

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