Second Opinion: Well, I'm back from the... - Macular Society

Macular Society

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Second Opinion

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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.

29 Replies

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squinty7 years ago

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

squinty in reply to squinty7 years ago

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

180164 in reply to squinty7 years ago

Hi are you a PDT patient?

squinty in reply to 1801647 years ago

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

180164 in reply to squinty7 years ago

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?

squinty in reply to 1801647 years ago

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

in reply to squinty7 years ago

Thank you xx

squinty in reply to 1801647 years ago

Isnt there other help on the market now for you x

180164 in reply to squinty7 years ago

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

squinty in reply to squinty7 years ago

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

in reply to squinty7 years ago

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

squinty in reply to squinty7 years ago

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

in reply to squinty7 years ago

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!!!!!🤓!!

squinty in reply to 7 years ago

Yeh and my badminton has got worse... uuuurrrrrggghhhx

in reply to squinty7 years ago

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

in reply to 1801647 years ago

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

180164 in reply to 7 years ago

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

in reply to 1801647 years ago

Not yet are you?

squinty in reply to 7 years ago

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

in reply to squinty7 years ago

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

1801647 years ago

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

7 years ago

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

in reply to 7 years ago

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!!!!!

in reply to 7 years ago

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 immediate treatment.

in reply to 7 years ago

Hi, I had a fluorescent angiogram, oct etc but am a rare case so I will just have to hope that the Eylea helps me. I can't really afford to travel to Liverpool as I have just had tests at the American hospital in Paris and that was expensive as you can imagine! but I really do trust my surgeon in Portugal, so that's good. Good luck to you.

in reply to 7 years ago

Eyelea is considered to be perhaps the most effective of the options but the steroid Ozurdex which is inserted as a longer lasting pellet helps some where the anti-VEGFs have not worked.

I hope all goes well.

in reply to 7 years ago

H I've never heard of them but will ask my surgeon when I see him - again another option! This website is really amazing, hearing about what other people are having and simply just talking - - Thank you.

in reply to 7 years ago

Janalgarve The two other anti-VEGF options are Avastin and Lucentis.