Update on the eye appointment (best outcome that could have been expected)

General
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I had my appointment to speak to the eye specialist yesterday.

It went about as well as could be hoped. He confirmed that yes, I have an AVM at the back of my left eye (which could impact my vision if it bleeds), and for some weird reason, AVMs in the white of my right eye (which have no risk to my vision - but apparently would look rather impressive/scary if they bleed).

Fortunately, he could see no sign of a bleed or fluid on the eye at the moment. I will be monitored for a while, and then if everything continues to look stable, they will discharge me.

In a nice change of pace, however, I have been given clear instructions, with a list of symptoms that I would need to go straight to the eye hospital if they were to appear. In a strange way, it is rather reassuring to have such a clear list of symptoms to watch for (none of which, I am pleased to add, are happening right now).

Despite this being the best possible outcome, I still feel somewhat sad. I guess it is just the news that I have more AVMs, and the increased chance of having HHT has made me feel rather glum.

But - and I will hold onto this - at least I have seen another very nice doctor who listened and was super chill (which is really helpful for people with anxiety like me).

I will have a Doppler eye scan in Dec to determine if it is a congenital AVM or if it has developed later, which doesn’t involve needles ( :relieved: thank goodness). They are also going to write to a different hospital that deals with HHT to see about genetic testing (which admittedly probably will include needles, but there we go).

Wish me luck!

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WOW Writerchick, what an update.

Some BIG +'s in that
‘…no sign of a bleed or fluid on the eye…’ PHEW, that’s a relief.
‘…very nice doctor who listened…’ Now, that’s a rarity. Stay on their good side, you want to keep them.
‘…have a Doppler eye scan in Dec’ They have a plan.

Best of luck with your journey. Please, do let us know how it all goes.

Merl from the Modsupport Team

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Luck!

Not what you wanted but reads as a very positive update, really. I get the benefit of knowing when to react & go to hospital: that’s a really useful thing (because it stops you needing to worry about everything)

Well done! It sounds like you’ve got a really supportive person looking after you.

Best wishes,

Richard

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Not much I can do at the moment. :pensive: I have to wait to see if they want to do genetic testing on me for HHT (if I don’t get an answer by Dec I will also raise the question with the Royal Free).

Otherwise it is just a matter of waiting till my next appointments and looking out for my danger list of symptoms.

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In the eyes - not sure. The one in the left eye (the problem one) doesn’t look massive but it is right below the optic nerve - so if it bleeds over the nerve I could loose my sight in that eye. The others are in the white of my right eye so would cause no issue even if they bleed (never seen a scan/image of them)

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Monitoring for the moment. By the sounds of it they will only treat the eye AVM if it bleeds, otherwise they are just going to wait and see.