eye problems

Hi I wonder if this problem I have is any thing to do with CLL it started about 12-15 months ago my left eye started weeping it would do it for a few hours or a few days I saw my Dr said there was no infection he could see but referred me to the eye dept at the hospital I waited 7 months to see any one , when I did the washed my tear duct out and tried to stretch the tear duct as it was very very small (told it would shrink back with in 24hrs) then in to see the specialist who looked in my eyes said my duct was the problem and if I had the operation its 50/50 if it worked and gave me a paper to read which said its caused by DANDRUFF ??????? (I don't have dandruff ) and to go back in 6mth . I have just received my new appointment and at this time can hardly see out of both eyes (right one started doing it 3 mths ago) with wiping constantly and the cold weather they are very sore red and swollen has any one else had this problem thanks

14 Replies

  • I recently read an article that that said, CLL can infiltrate the eye's. I'm sorry I didn't keep the link. But I'm sure you could Google it

  • Your problem is very similar to something my sister suffers from - dry eye syndrome. I know it sounds like the exact opposite of your symptoms but watering eyes when you are outside is one of the telltale signs. There is also a condition called blepharitis (not sure that is spelt correctly) this can be due to dry skin (maybe what the doc meant by dandruff). Apparently it is quite common as women get older because of hormone changes (not sure if that rings any bells with you). Do an Internet search for dry eyes, there is a lot of information out there and if you are in the UK, try the NHS website.

    I am really surprised your doctor was so unhelpful as it is quite a common ailment. You could also try your local Optician or a good Pharmacy, they may be able to suggest something to help ease the discomfort.

    Hope you get relief soon.


  • Sounds like blepharitis...did they give you any antibiotic eye drops?


    I think you need to see an ophthalmologist familiar with leukaemia infiltrations of the eye, it is very rare... but you need a second opinion on this...


  • I was diagnosed with Blepharitis last year, after being diagnosed with SLL, ,my eyes get swollen and very red, they also itch, but don't run, I also get dry red patches on my face and neck, (and, unfortunately the marks on my neck look like love bites, as a few people have pointed out). My GP says it's a kind of Eczema and can be stress related, I've had a couple of steroid based creams, but I'm going back to the Doctor next week as it's just not getting any better, and I just hate looking in the mirror when it reallly flares up.

    I would try and get an earlier appointment if possible 😯

    Good Luck


  • gave me nothing just checked seeing the same woman so will have a word with my nurse at Liverpool McCartney unit see if she can help but reading up on it that seems to speak about all my symptoms thanks every one

  • Hi. If at all possible, I would try to get another appointment with a new ophthalmologist as soon as possible. 'Dandruff" indeed? Highly doubtful. You need to be taken more seriously. If you aren't able to get an appointment with a better doctor, soon then go back. But in the meantime, look hard for someone else. There is nothing more important than your vision. Good luck mush56. Keep us posted

    - Lisa

  • Same problem here...and I'm rubbing my eyes even now as I read your post.

  • During treatment with Ibrutinib I had tear duct blockages for a few months, followed by day long episodes of blurry vision. I saw a neuro opthamologist that works closely with Dr. Furman my Hem/Onc. I was worried about CNS (Central Nervous System) involvement where CLL invades the major nerve sheaths, including the optic nerve.

    The experts confirmed what Chris/CLL Canada says - CNS involvement is extremely rare, but they ran a series of tests that examined my optic nerve and the retina to confirm that was no damage.

    The doctors found a very rough surface on my cornea - similar to my plaque psoriasis (which causes my skin to shed excess cells- just like dandruff). Using artificial tears 3-4 times per day has completely resolved the problems. We have 3 different types OTC (over the counter - non prescription) here in the USA, so they are low risk and often used by people with contact lenses, lasik surgery or just common dry eyes.

    If you can get the drops, it would be a simple test to try them for a few days while you wait for your next doctor appointment.


  • Hello mush56,

    I have also started to have those symptoms. I like the weeping description as it is different than tearing.At least for me.The fluid seems a thicker viscosity ., like "sleep" after sleeping .There are periods of dry eyes but those have become less frequent .I have also had episodes of my eye lids not responding to opening.Dr. has set me up for an appointment with an eye plastic surgeon about a stretched muscle...??? Will see what happens then.

  • im sorry some of you have the same symptoms but im glad I can go with some information to throw at her, yes it is a thicker liquid than tears Walkingspirit33 my eyes are so sore now im contemplating going to A&E see what they think cant get into the Drs till I try on Monday morning when they open at 8am rang the hospital cant get earlier appointment than the one I have for the 6th april thanks every one

  • Don't know if it will help but my daughter has no tear duct in one eye and is prone to blepharitis. We were advised to make up a solution of cooled boiled water with a tiny amount of baby shampoo and to use this solution with cotton buds to carefully clean around the line of her lashes. This removes the debris more effectively than plain water but doesn't irritate. We don't use this every day but when her eyes become sticky it works well. I hope you find a solution that works well for you.

  • Hi I too have had problems with my eyes. At our local hospital we have an eye treatment centre which although overloaded with patients is excellent. Try to get an appointment with a specialist eye doctor or at a specialist eye centre. Best wishes and good luck

  • I have bleferitus (spelling?) And doc told me to wash w Johnsons Baby shampoo aroumd my eyes and take fish oil or flacseed oil 2x day. The good oil lubricates the eye naturally.I don't have much trouble with it at all now.

  • Just to clarify the advice James has given. Only use 1 or 2 drops of baby shampoo in a bowl of previously boiled and cooled water to clean around the eyelids otherwise the shampoo will sting. I once made the mistake of using too much! Ouch!


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