Worried and scared

[jaz64]

I recently went for an eye test as I was having retinal migraine in my left eye. Eyes tested but when the glasses came they just weren't right. I couldn't read close up and could not see road signs or number plates. So scary. My right eye is lazy so glasses do not help that. After having two re-tests I asked to have an OCT scan and the optician said there was a problem with my left eye. He didn't tell me what it was I had to get a copy of the OCT scan which was a long drawn out process getting that. It says that he sees that I have an ERM. The only thing that he told me was that glasses would not help and that's it. Gave me the Amsler grid and that was that. He said that the hospital would not do anything about it. So I went to my GP as by then I had a droopy left upper eyelid and an awful pain around my eye. He said that he does not know what is causing that eyelid and has referred me to the hospital.

For the past 3 weeks I've worried myself sick. I've read about an ERM and it looks awful. Looking at my OCT I do not have the scar growing over my macula. The fundus always has white dots in it. The OCT of my right eye looks dreadful as if the eye is dead. I have read so many worrying things about the operation and can I risk one being that it's my only working (well sort of - everything is blurry and my eye feels uncomfy). I honestly don't know how I can live with this. I do a lot of craft work and make cards, but I've had to give up doing them. I just don't know what to do.

[springcross]

Hi jaz64. I'm afraid I don't know anything about ERM (Epiretinal Membrane ?) but there may well be others on this forum who do and will respond in due course. You could contact the Macular Society - they may well have some info on this, their number is 0300 3030 111 and they are very helpful. What I have seen is the only treatment for it is a vitrectomy which I and several others on this forum have had, especially when suffering vitreous tears or detachment and vitrectomies are not always as bad as they sound. What I don't understand is why the optician has said that the hospital would not do anything about it - maybe I'm not seeing something here. With regards the droopy upper eyelid and pain, I have no idea but again, someone else on here may well know and maybe will respond to you. What you really need is that hospital appointment and I hope you get one sooner rather than later as at the moment, it's all such a worry for you. I know you've already read up on it but I've left three links about it below which you may not have seen yet. Good luck and please let us know how you get on.

webmd.com/eye-health/what-i...

medicalnewstoday.com/articl...

rnib.org.uk/your-eyes/eye-c...

[Shimano]

dear jazz64. You have my heartfelt sympathy. Where you are, worrying yourself to death, is a terrifying place to be. I speak from experience. I looked up the references from springcross and I think you will find them very helpful…I certainly did. I would also recommend the macular societies telephone counselling service whose number is on this site. They steadied me three years ago when I was in a similar state of panic and give practical help as well. I have found meditation useful to stop catastrophying about the future too much. The Mindfulness association offer a half hour sit at 10.30 am and 7.00. It is on zoom and is free for the first six months. Members from several countries. A good way to be kind to yourself. I wish you all the best.

[tallyho]

hi Jaz64

How worrying this must be I have found the RNIB eye health team really good to speak to about eye conditions as many of them have worked in that sector so know their stuff.

I have phoned them in the past and they gave me not only information on my condition from an eye care specialist but also gods advice too.

You can contact them on

[phone]

And just ask for the eye health care team they will phone you back if you do t get through on uour first attempt. I wish you well

[pinkperfection]

I cannot add any more to what has already been said all very good advice. The Macular Society helpline are very good and you need someone to talk to who are understanding and give advice. They calmed me down when I was first diagnosed with MD. Number is 0300 3030 111.I know how I felt and it is all very frightening. Try to stay positive if you can.

[Cockerspadge]

Hi jaz64. I’m so sorry to hear about your problems, it’s a very worrying time for you. My situation was very similar to yours. I only have one working eye (right eye lazy since childhood) & I developed an ERM in my left eye in April 2015. I had quite a few problems which needed to be treated first & I won’t bother you with them but I had surgery (Vitrectomy/Pars Plana) in February 2016. It was very scary at the time but it was straightforward, successful & I was back at work two weeks later. A few months later, I did develop a cataract in the same eye (which I’m told was a consequence of the surgery) but again, this was operated on successfully. It’s amazing what surgeons can do so please try to stay positive. I’m sorry I can’t offer any advice on your droopy eyelid. I did have a similar problem but was told by my consultant that it was caused by the eye drops I was using at the time, but as you aren’t putting drops in your eyes, then this obviously isn’t the cause. I wish you well, stay strong, you can get through this.

[fed13]

Dear jaz64, I am so sorry for your plight and feeling worried and scared. Like springcross I know nothing about ERM, but I do know what a shock it is to find out something is wrong with one's sight. I am glad you have had so many replies with such good advice. I do wish you the very best. Tell us how you get on. Sending you a hug xx.

[ColWi]

I really don't know what the droop is but, did they check you for facial palsy. I have had that. Which is totally different than the disorder I have. You should ask your GP to test for that. Personally if I have a doctor that refuses to answer my questions and just leaves me with fear. I'd find another Dr. I hope you can find a Dr. that will help you understand and treat what is going on, I am so sorry that happened to you.

[iAdnanShah]

Get well soon.

[iAdnanShah]

You should consult the opthalmologist for your problem. Don't just delay and start the treatment..

May we all get well soon.