19th November 2008

I got 3 major developments recently.

Well I had my first eye test since my bleed just over a week ago, and was surprised to learn that I lost some sight in both eyes, not just my right as I thought. I thought right sided vision loss meant my right eye. Apparently it means loss from the right side of both eyes. Why did no-one explain to me what’s wrong with me? I’ve got identical vision loss in both eyes. I’ve been thinking Im going mad for months now because I see spiders on walls and running across the floor and figures to my right which aren’t really there - I also learned that I’m having ‘normal’ hallucinations. Normal in the sense that they’re common in people with damage to the occipital lobe of the brain. At least now I know I’m normal!!!

To top it all I got my date for my gamma (9th Dec). I’m frightened. I’m having a general anaesthetic for the whole procedure - worried sick that I’m not going to wake up again. I go into hospital on 8th to be given a course of steroids to reduce swelling. I negotiated being allowed to come home on that first night, just so I can sleep in my own bed. The procedure is going to be done on 9th and I feel sick to my stomach about the whole thing!!

They do say all things come in 3’s.

Loz
My thoughts and prayers will be with you on the 9th.
Lee Ann

Hello Loz . I hope all goes well on the 9th. So you are scared , yes ? Understandable in a situation where one has minimal control over the outside circumstance . Inside you must be very much in control else you would have not been able to cope through this . I am so sorry that you had no guidance with the visual deficit and the affects caused by the damage . It is reasonable to expect a comprehensive explanation and (re)education with any deficit , more so visual as we are , how we “see”. There are usually medical staff who handle these issues immediately .
As it was explained to me , your “brain” will not allow any empty space anywhere . Not even in your visual field . Just as your brain will fill in physical space in your skull by creating more cs fluid it will fill in your visual field with one type of phenomenon or other . The brains way of helping you cope .
Perhaps at treatment time you might get more information about your vision and in persuing this end you could make a positive difference for yourself and the next person to come . You are in my prayers . Be good to you . Take care of you .

How sad they didn’t give you that information at the beginning when you lost your vision! I’m sure you are scared. You will find something or someone that will help you thru this and find the strength to cope with the treatment. Read all the info on this site about Gamma and that will help too.

Loz, I think it is very normal for you to be nervousz about your procedure, If you read the stories here of others who’v had the Gamma knife, it will probably help reassure you. Pleas know that you ar in my prayers, Loz!

Loz i know you hate hospitals but hang on in there, you will come through this we are all praying for you.

Thank you all. You are all so supportive on here. It’s the only place I’ve found where I’m actually understood a bit. Someone at work was talking to me about my treatment this week. They said “well at least you know that after 9th December you’ll be cured, back to your old self and the risk of it ever happening again will be gone forever”!!, I thought yes maybe that will be the case in a few years time, as for the back my old self bit, I think this whole experience has changed me in many ways that are permanent, and I never thought I would say this but some of those changes are changes for the better, as well as some changes I could have done without. I didn’t try to explain that to this person, as I don’t have the energy. I’m sure I’ve said the wrong thing to people at times - at least this time I could laugh about their lack of understanding. Thank goodness I found you guys on here!