At last some progress!

I joined this group in February and yesterday I finally got to see my Consultant Ophthalmologist!

After being tested left, right and centre, the Ophthalm. looked very confused. He believes that I have a varicose vein in my left eye and that there were only purple veins in my eye.

However, upon looking in my eye again there are also arterial veins and he was very confused by it. He thinks I have a varix, but there shouldn't be arterial veins there too.

So, I have been recommended for a CT, CTV and CTA!! Plus they want to test my field vision again.

He also let me know that I wasn't really the person I needed to see (!!) and that he was referring me to an orbital surgeon - another long wait!!

So how does this explain the soreness on the left hand side of my scalp, the drainage veins apparent on my nose and the sac of fluid that sits on my top lip from time to time!!

So, back to my family doctor again and this time I'm going to asked to be referred for an MRA, so that they can look at the whole of my head as, yet again, I'm being passed from pillar to post with no-one really knowing what's going on!!

Anybody out there had a similar experience and do you have any suggestions? I really want to get this moving without treading on too many toes!!

Thank you in advance.

hey,

I have an orbital AVM that wasn't diagnosed for 8 years after having MRI scans, CT scan and all sorts of input from the ophthalmologist at various hospitals. They originally thought that it was a varix as it was venous in nature, however over the past two years it has increased significantly in size and has become more arterial. It presents as a large pulsating lump on my eyelid that has dis shaped my eye ( i would be happy to post some pics if you want) and i have an obvious drainage vein on my cheek. the doctors were very unsure what it was until I was lucky enough to meet a consultant at the hospital where i am training to be a nurse who had spent time with an AVM specialist in canada and recognised the symptoms. He sent me for a cerebral angiogram and that confirmed his suspicions and it was diagnosed in November last year. I have since had 2 embolisations to reduced the fast flow blood and am awaiting surgery to have it removed. some experts in this particulat AVM are Jack rootman in canada and James suen in America (not sure of exact locations) I am UK based and receiving treatment in cardiff.

I hope this is of some help to you and that you soon have things sorted. I know how frustrating it can be not having a diagnosis and active treatment and how it seems like a long waiting game.

best wishes

caro.

Thanks Caro, for the response.

My AVM in my left eye actually appears as if it comes from behind my tear duct! It's most bizarre and totally freaked me out the first time I saw it. It's deep purple and surfaced permanently at Easter for about a week without budging. Normally it only appears when I bend over. Did you have similar? I've been complaining about my eye for about 10 years now, after a negative reaction to a contraceptive pill. Then after having my son it got worse with pain and pressure when I bent over with nothing visible in my eyes. I was told it was my sinuses even though I protested! This was all in England.

Then I moved to Canada in October 2007 and just forgot about it "what's the point, they'll just say it's my sinuses". That was until Feb this year when I saw the purple in my eye. Even now, if I look to the far left, when upright, it pops out, it's so gross! There's been a big change and that's what worries me.

Let me know how it goes for you.

Kind regards.

Dionne

caro Head said:

hey,

I have an orbital AVM that wasn't diagnosed for 8 years after having MRI scans, CT scan and all sorts of input from the ophthalmologist at various hospitals. They originally thought that it was a varix as it was venous in nature, however over the past two years it has increased significantly in size and has become more arterial. It presents as a large pulsating lump on my eyelid that has dis shaped my eye ( i would be happy to post some pics if you want) and i have an obvious drainage vein on my cheek. the doctors were very unsure what it was until I was lucky enough to meet a consultant at the hospital where i am training to be a nurse who had spent time with an AVM specialist in canada and recognised the symptoms. He sent me for a cerebral angiogram and that confirmed his suspicions and it was diagnosed in November last year. I have since had 2 embolisations to reduced the fast flow blood and am awaiting surgery to have it removed. some experts in this particulat AVM are Jack rootman in canada and James suen in America (not sure of exact locations) I am UK based and receiving treatment in cardiff.

I hope this is of some help to you and that you soon have things sorted. I know how frustrating it can be not having a diagnosis and active treatment and how it seems like a long waiting game.

best wishes

caro.

Hey,

At first mine would get worse when I bent over and my surgeon would get me to blow and hold my nose as this also made it swell. It is now just there all the time and I can see the vessels spreading out towards my nose, these things have a mind of their own!! I would recommend getting in contact with Jack Rootman if possible as his interest is in this area, my surgeon spoke very highly of his knowledge on orbital AVMs. He wrote an article entitled: vascular malformations of the orbit: Hemodynamic concepts which you may find useful. I have an email address for him but am not sure if its correct and if he uses it: ■■■■■■■■■■■■■■■■■■■■■■■■■■■.

I hope that you soon receive some help on sorting this out, I will let you know how my surgery goes when I finally have this and whether it were a success or not!

best wishes

caro

Hi Caro

That's great information thank you. If I feel like I'm getting nowhere I'll go the "Rootman" route!

Yes, let me know how the surgery goes - break a leg!!

Take care.

Dionne

caro Head said:

Hey,

At first mine would get worse when I bent over and my surgeon would get me to blow and hold my nose as this also made it swell. It is now just there all the time and I can see the vessels spreading out towards my nose, these things have a mind of their own!! I would recommend getting in contact with Jack Rootman if possible as his interest is in this area, my surgeon spoke very highly of his knowledge on orbital AVMs. He wrote an article entitled: vascular malformations of the orbit: Hemodynamic concepts which you may find useful. I have an email address for him but am not sure if its correct and if he uses it: jrootman@interchange.ubc.ca.

I hope that you soon receive some help on sorting this out, I will let you know how my surgery goes when I finally have this and whether it were a success or not!

best wishes

caro