Scared I'm going blind

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nicolabarnett

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I am so so scared now that because of this bleed and white blindness that I keep on getting that I am going to go blind, what do I do if I do go blind how do I cope
 

Enclave

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I am sorry to hear this, you will find a way to cope. Have you looked at the RNIB site yet, it may help.
edit to add .. I hope your appointment goes well and your not going to loose your vision .
 
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AndBreathe

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I am so so scared now that because of this bleed and white blindness that I keep on getting that I am going to go blind, what do I do if I do go blind how do I cope

Nicola - I can see why you might feel as you are. In your shoes, I'd be very worried too. Try to take each day as it comes and try to relax as much as possible.

I can't give you any guidance in anything, but I send you all my positive vibes and best wishes.
 
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nicolabarnett

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Well I have been to the hospital and am being referred to the senior opthalmologist next Wednesday to see if he needs to operate, I have been signed off work with vitreous haemorrhage in left eye and macularpohy in right eye for two weeks and at the moment I'm not allowed to drive, not sure how or what to feel now
 

June_C

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Chin up Nicola :)

Think positive if you can. They work miracles nowadays.
 
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AndBreathe

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Well I have been to the hospital and am being referred to the senior opthalmologist next Wednesday to see if he needs to operate, I have been signed off work with vitreous haemorrhage in left eye and macularpohy in right eye for two weeks and at the moment I'm not allowed to drive, not sure how or what to feel now

I'd urge you to go with relieved, on the basis you are getting decent, senior, attention and secondly that you can rest up, without having to worry if you'll make it to work next day.

I'll keep my fingers crossed for you Nicola.
 

noblehead

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Well I have been to the hospital and am being referred to the senior opthalmologist next Wednesday to see if he needs to operate, I have been signed off work with vitreous haemorrhage in left eye and macularpohy in right eye for two weeks and at the moment I'm not allowed to drive, not sure how or what to feel now

Pleased you've been seen Nicola, rest assured they will only do the op if they feel it's absolutely necessary and in your best interests. Good luck.
 
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the_anticarb

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Hi Nicola, please try not to worry easier said than done. A few years ago I was exactly where you are now, I had a bad hemmorage in my left eye and to make it worse I'd also just resigned from my job and was working my notice. It was the end of the world at the time and I was petrified but four years on both eyes have stabilised (I went on to have a bleed in the other) and I have been put back to annual checks as my opthalmologist thinks I am very unlikely to have any further troubles iwth my eyes. I have a tiny patch of blindness in my left field of vision but with both eyes open I have a full field as the other eye compensates.

It is very scary but it is rare to go blind from retinopathy these days. They can do a lot with laser, or if it is too far gone for laser you may have a vitrectomy as I did. Don't be scared of the op, it's not that bad even if you can see them working on the retina well you can't really shut your eyes! I found it fascinating actually. They shot me up with liquid valium so I wasn't stressed.

Good luck with your forthcoming appointment feel free to PM me if you like.
 
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Brunneria

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I am so sorry this is happening.
But you seem to be getting the appointments and time off you need, so it seems like you are in good hands and getting the best care.

Please let us know how you get on. We are all rooting for you.
 
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noblehead

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Hi, I've had a vittectomy and the bleeds ate worse than before x

You've had the op already, were you rushed in Nicola as you said you were seeing the Senior Ophthalmologist this Wednesday.
 
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nicolabarnett

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No nobelhead, I had that operation May last year and ever since the bleeds and white blindness has gotten worse. I am going to see the Snr opthalmologist on Wednesday
 

noblehead

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No nobelhead, I had that operation May last year and ever since the bleeds and white blindness has gotten worse. I am going to see the Snr opthalmologist on Wednesday

Right, well good luck and hope you get things sorted Nicola.
 
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No nobelhead, I had that operation May last year and ever since the bleeds and white blindness has gotten worse. I am going to see the Snr opthalmologist on Wednesday

So sorry to hear of your eye problems, I had an eye Op over 2 years ago now.
Wishing you good luck and all the best for Wednesday, take care Nicola.
 
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Did it help ?

I had a detached retina and I had to be operated on fairly quickly. It did help, my right eye will never be the same as the left one, but I have not had any adverse affects. I had to go to another hospital, 30 miles away and I am still under their care, but not so frequent now.
Edited to say, I have to have lifetime eye drops for the right eye, due to pressure build up, as it was high, but now down to normal pressure, using Timolol x 2 per day. After my op, I was on 11 eye drops a day and then it gradually got less and less.
 

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Hi Nicola, I'm so sorry to hear you're going through it at the minute. It is one of the most scary things to experience - I know.

I've had retinopathy since 2008, had vitrectomy in Jan 2013 in left eye. Unfortunately, vision didn't improve. But I still have some, which is far better than the alternative of a detached retina. My other eye was treated successfully, and compensates for the other. I recently renewed my driving licence, for instance.

It was the fear of the unknown that I recall the most. I thought nobody else understood. That makes it tough to remain positive. I don't know what hospital you're under, but Moorfields have an excellent service where you can talk to someone neutral who knows what you may be feeling. I was initially reluctant, but it really helped. Your service may offer something similar.

It sounds as though you have a great team looking after you. Make a nuisance of yourself if you need to. Ref the maculopathy in your right eye, might Lucentia/Avastin injections be an option? You may well fit the criteria. It worked wonders for me.

I know how tempting it is, but please try not to keep closing one eye to compare the vision. It doesn't help, and will drive you mad worrying.

I am keeping it all crossed for you. If you need to talk, PM me.

Karen x