Second Opinion

Well, I'm back from the American hospital in Paris and they seemed shocked that I had not had an angiography - has anyone else had one? They tested me on up to date machines but pretty similar to the ones I have only here in Portugal and they didn't seem to think there was much of a problem and told me a definite NO to PDT, they said I should have a test before every injection to see if new blood vessels are leaking into my eyes and there were some new ones in my left eye. I already had an appointment booked for an injection in that eye as soon as I got back, so I told my surgeon that I had been for a 2 nd opinion but he says I have a rare condition, then he gave me a second injection in the bottom of my eyelid - -an anti inflammatory I think. I am going to talk to him properly soon ( no bright lights and things to hold my eye open!!) and I'm taking a friend with me and a notebook & pen because I want to know exactly what is wrong with my eyes👀- oh and he's not ruling out PDT treatment. It's all very scary and depressing at times.

25 Replies

oldestnewest
  • Omg that is scary I don't know what to say about any of the stuff you are mentioning! Advice seems very disjointed, if you are English why dont you come to London ? They have the best hospitals here and mr kashif Qureshi he's the best. London eye hospital or Can't you come as an emergency patient to a and e to moorfields or western eye ?

    I'm very scared about my own sight which seems to be getting worse but at least I'm in good hands.

    Big hugs xx

  • Btw they always do a scan before each injection to see how the blood vessels are and if they are leaking xx

  • Hi are you a PDT patient?

  • No I'm having Eylea injections treating my wet macular x

  • I've never been offered the injections maybe my condition is more advanced. my eyes are deteriated even with treatment. started in 2008 when I was 45. I'm registered partially sighted are you?

  • Omg sorry no I was only diagnosed this year with wet macular and dry in other so just having the injections in one eye, my sight is still reasonably ok. How sad for you good luck xxxx

  • Thank you xx

  • Isnt there other help on the market now for you x

  • I think the treatment is the last resort. I miss working but otherwise life is good. ; )

  • And you are so young as well I'm in my late sixties but it's still devastating x

  • I'm not so young squinty, I'm in my 60's too but it still hits you like a brick! X

  • Tell me about it I'm 68 myself and it's so so scary wavy lines and distorted vision x

  • It's just nice to be able to 'talk' to someone with exactly the same problems , I don't think anyone understands what we are seeing - the wavy lines are just so horrible, I'm going to put in a request to designers to make things with rounded edges!!!!!🤓!!

  • Yeh and my badminton has got worse... uuuurrrrrggghhhx

  • I do t know, I just wish my husband was still here as he was an optician!

  • No my sight isn't too bad , I have glasses but I can still see to drive and play tennis( of sorts)! You're very young and I can't understand why you haven't been offered injections. X

  • Too late for injections a small minority like myself just have the pdt treatment. ; (

  • Not yet are you?

  • My sight is still ok but I'm having injections gotta have my 4th one on 22 Nov hate them but they will help

  • I rung both the London eye hospital & Moorfields but neither of them was at all interested in giving me a second opinion, that's why I went to Paris. I hear there is a good eye hospital in Manchester, so if I don't get answers this week I will try them. Thanks for your concern and kindness. Big hug for you too x

  • How scary for you. I've never had any injections just PDT treatments using visuldyne. In hull where I live we have a specialised pdt clinic which I go to every few months. I hope you get some answers soon. Regards

  • Hi janalgarve, I Had a fluoroscein angiography right at the beginning as part of my diagnosis but since then only have the OCT scans to check how the inj are doing.

    I've had OCT after every set of 3 inj and also when I had the extra ones. This last time I had OCT after the 2inj of this set of 3 but I think that was more because they have been thinking of changing me to eylea and wanted to double check what was happening.

    The FA shows more detail as the dye they inject goes into all blood vessels and glows! it shows any blockage.

    The OCT shows the ongoing level of oedema, a bit like a map with contour lines showing the hills.

    It does seem strange you never had an FA . Definitely ask lots of Qs and have your friend write down the answers! Ring the Mac Soc, they might advise specific Qs to ask especially re the 2nd opinion on pdt. 0300 3030 111

    Best wishes going forward x

  • Thank you eyeright, I have just been trying to translate the report from Paris, which arrived today and basically it's saying my left eye is bad but I already know that - you seem to understand an awful lot talking about OCT and oedema! I'm hoping I understand a lot more by this time on Friday!!!!!

  • Hi janalgarve As I commented in another post if you can get to Prof Heinrich Heimann's clinic at the Royal Liverpool, preferably ASAP in the case of oedema, you are likely to be offered fluorescene angiogram, u/s, slit lamp, OCT and if appropriate immeditse treatment.

  • Dear Janalgarve,

    I am sorry to read about your various concerns.

    Please see the following link to our booklet on treatments:

    macularsociety.org/sites/de...

    our guide to wet AMD:

    macularsociety.org/sites/de...

    our Guide to Macular Degeneration:

    macularsociety.org/sites/de...

    and the emotional impact of:

    macularsociety.org/sites/de...

    Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments.

    macularsociety.org/6months

    Please do not hesitate to contact the Macular Society helpline if you would like to discuss your concerns further.

    Our helpline is open 9am – 5pm Monday to Friday on 0300 3030 111

    or you can contact us via

    help@macularsociety.org

    Kind regards,