Hi All,
just wondered if anyone has any experience of this.
Since Thurs
I have one eye where the pupil is more contracted than the other and the eyelid is slightly swollen so it looks worse.
I do not have anyother symptom.
No redness or puss…
I have not had
headaches, dizzyness, sickness, double vision or any other vision problems.
I am on Fentanyl patches but it is only the one eye.
I did see a GP on Fri who was puzzled and dosn’t think it is BC related?
What do you think?
Whilst ever the chearleadery type of possitive person that I am I have to say I am a little sceptical at this.
Am being refered to an eye clinic but of course I have already sent the email to my Oncologist.
I have a condition called horner’s syndrome…basically a droopy eye which is caused by tumours in my neck pressing on optical nerve.
So far(happened last September) doesn’t give me any problems other than looking wonky. I went to my GP clutching my own diagnosis from the internet…
Not sure this will help you though.
Jane x
Hi Jane,
Thanks for your reply.
I have just been looking it up on the internet and other causes.
I think I just need a full set of scans…
I have neck problems at the moment and although I have had a CT and MRI which showed nothing, something is going on.
Waiting for a bone scan which is scheduled next week…
think I will go and make some noise…
Hi bikinggirl,
Like Jane, I too have Horners syndrome. I notice you say you have neck problems which I had when I developed horners syndrome. I am not sure if your neck problems are cancer related. Mine were a lot of lymph nodes around neck area and one side of my neck was so badly affected I had scar tissue which prevented me turning my head to one side. I was unaware of the eye problem until the onc noticed it when I was having my first herceptin. Just one of my pupils does not dilate very much and the eyelid won’t open fully. No tests were done to confirm this - it was just an observation. The eye problems are caused by damage to some of the nerves to that area.
Dawn
xx
Hi Jane and Dawn,
Once again thanks for posting.
I had not read Janes post properly and thought that her eye was droppy instead of just the eye lid.
The neck problem I have is being a nightmare as it started with a winged scapular a couple of months ago. I had a MRI and CT but nothing showed and then things started to get painful around the shoulder and chest area.
At first my GP though I had nerve damage to the Long Thorasic Nerve and was being told it was an age thing (I was so not impressed).
Anyway it got worse and now I am seeing a physio and I’m also on pain meds.
The physio thinks its a misshaped disc and has given me exercises to do which after my last appointment the eye went funny.
I have a ‘hump’ between where the neck and bra strap sit now and the pain is getting worse.
(The hump I have been told is muscle which is so tightly packed it gone into like a spasam)
I have got in contact with my oncologist who thinks this could be horners syndrome which as she says is caused by lymph node pressure and I’m in for a scan at the end of the week.
Did either of you or do you get twitching in the eye?
Anyway I am so hoping its not new growth but I will be pleased to get to the bottom of this. The neck is driving me nuts and of course meds arn’t working as well they should so once I know whats going on I’ll get a plan of action.
Best wishes
Tess
Tess - I dont recall twitching in my eye but what you are describing on your shoulder sounds very familiar. My swelling was due to lymphatic problems in that area and it was one of the few pains that caused me tears. It was like a nerve pain due to pressure but then I have so many spine probs from the bone mets as well. The top of my spine is pretty badly damaged - well most of it is really but i think that part is the worst followed close second my the lumbar area. I think you do need that scan to see what is going on.
Dawn
xx
Tess
Just asked my partner whether she would describe my eye or my eyelid as droopy and she insttantly said eye lid. Yes my eye does sometimes twitch.
I’ve had a lot of problems with nerve pain in my back, shoulder and arm. Last week when I was in Mallorca the pain got much better but now I’m back it is happening again though much better than it has been.
I have tumours in my chest and shoulder and neck. Really scared about what they’ll do next. Worse thing for me is losing my voice…last September my voice literally disappeared over night. I had a minor operation to put bioplastique into the damaged vocal chord…it has restored some of my voice but I can’t speak loudly and its really hard to make myself heard when there’s any background noise. Speaking long sentences is hard too! I joke about it but it does have a hard psychological impact because I feel so publicly that I have cancer.
Hope you can indeed get to the bottom of what is happening.
best wishes
Jane
Hi Jane and Dawn,
Well it certainly sounds like I too could have horners syndrome.
I emailed my Oncologist about the eye and she thinks it is too…
I have just had another scan CT on head and body and will get the results next week, Friday.
I am also having a bone scan done on Mon.
It has been reassuring to hear of your experience, at one point I though I was going mad!!!
I am a bit scared what the scans will show but in a very strange way my biggest fear is they show nothing!!!
I am still comfortable with the fact I would have had other symptoms if this was mets to the brain…(Is that a headache I can feel)…
Jane, I remember reading about your voice.
That is a very public symptom and I can understand how frustrating it must be.
To me its like the cancer has over stepped the mark.
I seem to be struggling to get the pain under control as well. one min i am fine and the next its all really painful and I’m reaching for the oramorph and comfort of my bed.
The worst thing is I am having difficulty shopping as walking around for more than 45 has in a lot of pain…
(now this cheerleader is getting a bit pi**ed o** by it all).
Hi bikinggirl,
Glad you are starting to get some answers and do hope come up with some explanation that is not too serious.
It must be tough on you Jane as BG says, not being heard and really not able to do anything about it cos I am dammed sure I wouldnt want to keep explaining why the lack of voice.
BG - sympathise greatly over inability to do a shopping marathon. I think I really miss that a lot. On line shopping has no appeal for me. It is quite a treat to be taken out + mobility scooter to a large shopping centre, but it isnt something I want to do on my own yet.
dawn
xx
Well we’ll soon be able to have our own forum on horners syndrome at this rate…
Hope scans go as well as they can BG.
Jane