I was in a car accident coming up to 3 months ago, a few days later I woke up and my vision was blurry. I went to the opticians and then the hospital who told me my eyes were absolutely fine but my vision was drastically deteriating due to abnormalities in the brain. There was no sign of trauma so the car accident was dismissed. I was then told my vision couldn't be measure because I was considered "blind". I was admitted to hospital for 2 and a half weeks, I had two lumber punctures in which the cells could not be properly tested on due to being sent to the testing labs too late, blood tests that came back clear and I was clear of diseases and infections. Small lumps on my brain have been detected but they have gotten smaller and are now less than 1mm big. My body scans are absolutely fine too. I was then put on steroids (prednisolone) for 2 months. My vision has completely improved and I now have 20/20 vision. Although the radiologist still seems to suspect Lymphoma to the brain the doctors are unsure because I have no other symptoms. I do not feel unwell or sick, there are no lumps, I don't feel tired or weak and I still have an appetite. The doctors are unsure and are going to see how I respond once I come off the steroids all together. Any idea at all how likely I am to have Lymphoma? Has anybody had anything similar to what is happening? Could this just be inflammation of the brain? I'm so scared and it's torture not being given any advice or reassurance

23 Replies

  • Hi Hanna,

    CLL is one of a large number of Non-Hodgkin lymphomas. Average age at diagnosis is around 71, so given you are 50 years younger, it is extremely unlikely you have this form of lymphoma. Also nervous system/brain involvement is rather rare with CLL.

    The good news is whatever caused your temporary legal blindness has disappeared, though you are obviously concerned about being left clueless as to what caused it.

    A Flow Cytology blood test might give you some peace of mind about the lymphoma connection, as it's the definitive test for lots of leukaemias/lymphomas.

    I hope you find the answer to your hopefully temporary and very scary blindness episode or at least that it doesn't ever come back.


  • Thank you Neil!! That's reassured me a lot, I'll ask the doctors at my next appointment about a Flow Cytology! This is all new to me and to be honest I'd never even heard of Lymphoma before so I've been doing a lot of research on it :) I was blind for just over 3 weeks which was terrifying, I'm very very grateful to have my eyesight return!

  • Hannah

    I would just like to say what a scary experience that must have been. So very pleased that your eyesight has now returned.

    I know how I would have felt during those three weeks, petrified as well.

    My best wishes are sent and good luck for the future.


  • Thank you Sue! Hopefully I can get some answers in the next couple of months :)

  • Thats why its called the practice of medicine its an art not a science. As a retired family therapist I can tell you ones emotional health and their physical health dove tail. Your genes also play a large role in your health. A car accident can cause emotional trauma. Stress also plays havoc with ones health.

    Taking care of your emotional health may be the key to your healing. If possible remove from your life whatever or whoever gives you great stress

    Best of luck.


  • Thank you for your comment Minda :) If you had asked me this time last year I would have said I was stressed, but this year I've managed to get things back on track and I've been pretty happy! They've ruled out trauma all together I've just been left to wait and see now! There's a number of different doctors from different hospitals across Britain looking into it, including Oxford University, but it seems to have thrown everybody off so far :/ I'm doing regular exercises and eating a healthy balanced diet to ensure I'm looking after myself :)

  • Life is wait and see. Live in the moment as its all anyone has. Focus on being thankful and joyful which wards off illness.😃

  • I couldn't agree more :D Being given my eyesight back is probably the best gift of all so I'm definitely staying positive about everything! Every now and again I'll feel down just because of the unknown but I'm making the most of what life has to offer for the time being :P

  • Keep up the good work!

  • I couldn't agree more. I was diagnosed with CLL last September and I didn't realize how much your body listens to your brain. I actually made myself feel worse than I really was by feeling stressed or down about my situation. I thought every little pain or problem I had was associated with my CLL. It's very important to understand that not everything is CLL related and you can make yourself feel worse than you really are with stress or negative thoughts. It's not easy but you have to think positive and focus on non stress related things. I started doing this 2 months ago and I can tell the difference in my health.

    Best Wishes

    BC 😎

  • I'm the exact same!! I'm making myself paranoid thinking that if I have a small pain in my arm is it related, or and itch in my head! I'm happy that you're feeling much healthier, how are you feeling about everything now? I hope you're OK!

  • I'm feeling better. I am on watch & wait. I was hoping that I would be one of the 30% of the lucky ones that never have to start treatment however yesterday at my Oncologist appointment my doctor told me that I would probably need treatment in the next 2-3 years so that takes not needing treatment off the table. I drove home feeling low but then I realized that this is out of my control and I can either live every day like it's my last or I can go on the next several years worrying about my situation. Happiness lies in your own hands.

    Best Wishes


  • I'm sorry to hear that you've received the news you didn't want to hear :(

    Why is it you have to wait as long as 2-3 years for treatment if you don't mind me asking? It's so reassuring hearing how positive you are about everything, I'll definitely be taking a note out of your book :P

  • The doctor said based on my blood results and progression. He plugged my numbers in his computer and it spit out a time frame to treatment based on my numbers and other CLL patients with similar numbers. So it's not concrete but it gives you an idea of the progression and the time to treatment.

    You will be fine. Just stay positive and don't be afraid to come here and vent.


  • Ohh right, it's clever how they do it :0 And is that then likely to cure it or have they not gone into that much detail just yet? :)

    Thank you BC, I will do :)

  • No details. 😅🙄😉


    Wow this is such a shocking story! I have CLL and I also had eye/skin problems that only steroids would clear up. Steroids seem like a miracle drug to me. My doctors would not use steroids except for the first early treatment saying that they had to weigh the risk/vs. rewards.

    Anyway in your case to go from "blind" to 20/20 is a miracle story and I am so happy for you. Since your tests are all clear, sight restored and lumps vanishing I would not worry but try to get on with enjoying life to the fullest. Exercise and eat whole foods. That is the way you really win. As a side note I also had some bumps that went away. Steroids worked great for all my bumps and rashes. I'm guessing you are young with your 20/20 vision. I think you have a lot to celebrate. Likely whatever happened to you was the result of the car accident.


  • What sort of skin problems did you have?? And how are totally doing now?? If you don't mind me asking, please can you tell me a bit about your story? I'm curious to know what other people have been through :)

    The steroids have worked a miracle so far but then it all depends on when I come off them in 2 weeks whether or not things start deteriorating again, that's the scary part :P

  • Hi Hannahewebb,

    So you are 21 and I agree with Neil that this is not CLL which is great news for you. I understand what you are saying about steroids. For rashes it seems to be the very best and most effective treatment out there. When you come off of steroids your doctor will have a game plan to put you on something less taxing to your body if you need it. This is a good thing. There are many things he can do and in 2016 there may be something else (safer and more appropriate) for you to use as you get better and better. Seems like the steroids have done there magic and you don't want to stay on these strong drugs forever. After all you have been through it is natural to feel apprehensive. Sounds like you have a great doc and he won't let you deteriorate. Express your concerns to him at your next visit.

    Briefly I had an eye rash that lasted a year. Steroids worked but I could not stay on them so I had to go without eye makeup and use other creams. The skin rash all around my eye was really hard and pealed like I was 90 years old. It was a long journey and a rough year but it cleared up. I get poison ivy by just walking by it and mosquitoe bites almost always get infected so I have to be careful.

    I am so happy for you that you are doing so well. I admire that you ask questions. I like your curiosity and interest in others as well. I would give you a big hug if I could and tell you to go out and follow your dreams because you only go around once so make it count.


  • The game plan as far as I know is to see how my vision responds coming off the steroids and to then have an MRI end of August! If my vision doesn't go again and my head scans look better then I'll be given the all clear, otherwise I'll have to have a biopsy and possibly go straight into chemo..... basically I've been told I'll have about a 5 year survival rate if it is brain cancer so I'm pretty scared at the moment! :(

    How are your eyes now?? I hope they're better!! It's so scary having something happen to your eyes isn't it D:

    I've recently just got my diploma in college which qualifies me to work as a teaching assistant!! I've already been offered a job so as soon as I am off my medication in two weeks I can start :D :D

    I'll give you an "air-hug" over social media haha :D Thank you for reassuring me Kathy, you've really made me feel good about myself :P I really hope all is well with you!!


    I really get it what your doctor told you is scary. I believe in my heart you will be OK. Think of the comeback you have already made. Your body is working beautifully and there is no reason to believe that that will stop. I do not think you have brain cancer and I think you will live to be a very old lady! Your doctor is just doing everything he should as a good doctor. He told you the worst that could happen but that does not mean that it will. You are very brave and smart. Hang in there. Thank you for the hug. We can all use all the love, hugs and support that is out there. Let us know how it goes. I am pulling for you.


  • Hi Hanna,

    Welcome to our CLL Support website. Sorry that you are experiencing such difficulty in your diagnosis. I'm sure you feel, like you said, scared and it really is torture to have to wait and wait, with no word. Hang in there! I'm sure this will get better for you.

    I don't have any medical background experience to offer you, only a kind word of encouragement and I'll add you to my prayer list. We do have so many people with medical experience and they offer such wisdom with their advice. AussieNell is great with advice! As are many others...

    Prayers are with you and wishes for some good news!


  • Thank you very much for your support Faye!! I'll let everybody on here know any new news I receive, fingers crossed it's good news :P

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