I never thought I would hear a doctor say an avm is the least scary thing something could be

Types of Avm's AVM in Extremities
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As many people know I have an AVM in my right foot which resisted embolisation and developed CRPS putting everything on hold.

I also have a weird bundle of blood vessels in my left eye, which in 2014 bled. However because the bleed cleared up in a month no investigations were done at that time and I was just told to avoid anti-inflammatory meds to prevent another bleed.

Skip forward to February this year and I was at the opticians where they took photos of the bundle of blood vessels after I mentioned the AVM in my foot, They recommended and referred me to get seen at the eye hospital.

Thursday this week I had my telephone appointment with the Royal Free for the foot AVM - where I was told that I would likely be tried on the immunosuppressant drug (as they can’t do another embolisation due to the CRPS), but that I should now start considering a below the knee amputation (which rather than being through the foot as I was initially told by a local hospital will in fact be through the leg itself),

Then Friday rolled around and off to the eye hospital I went. After sticking a load of drops in my eye and taking several photos (no needles needed for these thank goodness), they stated that not only did I have a weird bundle of blood vessels in the back of my left eye, but weird blood vessels at the front of my right eye (but in the white of the eye so should not cause too much of a problem),

I forgot to add this this morning (panic brain very much engaged that) - but the eye dr said they would monitor me (but no idea if they will offer any treatment at this stage or if they wait till it becomes a problem and vision loss starts).

I asked them if it was another AVM? And then I heard something I never thought I would hear: an AVM is the least scary thing it could be.

I did not ask what else it could be. I am already having enough issues. But I did ask what the worst case scenario was. Answer: loosing vision.

Umm, what? I kinda need my eyes to see to be an archaeologist! This isn’t a career that I can do if I loose sight in both eyes!

And of course my brain is now spiralling into all worst case scenario’s like what if I have a cancer they haven’t spotted yet, what if I am dying! What also doesn’t help was the news that there had been an error on my blood test last week when they were taking a full blood count, and I have to wait three months before they repeat it. So of course my brain is now screaming in panic that maybe they spotted something on the blood but thought it an error and what if it isn’t!

Long story short - I am having to now consider amputation, might loose sight in at least one eye and am terrified that they missed something that might be fatal if not treated soon enough. (The news stories about people being missed with cancer and now being terminal is also not helping my anxiety either).

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For me, not knowing would be the most difficult piece for me, and not having a plan to try to figure out what it was. The fact they did not offer some type of diagnosis or follow up diagnostics or referrals is really beyond my comprehension. But, be able to provide a worst case scenario. I would be standing on the step looking fr answers as soon as they open next.

I can only imagine how this is impacting you, my brain would be madly off in all directions of worst cases. I can only speak from my perspective but I would be seeking the proper follow up to try and find out what was up. It does not seem that a baseless comment would be made by a medical person. Take Care, John.

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Hi John

Thank you, it means a lot!

I did forget to add in my initial post (panic brain very much engaged this morning - I will go back and edit it to add this) that they will monitor me for the eye issue. But no diagnosis at this stage, and it will be about three months before the next appointment. Which obviously leaves a lot of time for ruminating and worrying (one thing my brain is excellent at).

I do plan to come armed with a long list of questions (my list of questions are famously printed out, numbered, and with a copy for both me and dr at this stage), but it doesn’t help the worry. I was just so surprised at that statement (that I might loose my sight) that I sort of blanked and panicked.

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@Writerchick

I can’t imagine how you feel! Back in 2016, I could hear my brain AVM developing and, incidentally, my optician decided that I might have macular degeneration going on, so I worried about both of those. 2016 was a heck of a year! (The eye drops to examine your eyes are just lovely, aren’t they?) Fortunately in my case, the eye specialist decided I had a slight feature on my retina (but not AMD) in the September and I managed to get my brain AVM embolised in 2017.

I’m sure there are several people here with an AVM near their eyes (@matty springs instantly to mind) but the only one I know of with vessels apparently protruding into the visual space is Dan, @memyselfandeye, who has Wyburn Mason syndrome. I think Dan has no sight in his affected eye and some reduced vision in his other eye. So, one of the questions you could ask your doctors is whether Wyburn Mason could be relevant. If it is, we have at least two WM patients here and I know Dan is connected to others.

I know we all worry about the mad turns in the road of life but hopefully, we can support you along the way.

Very best wishes,

Richard

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Hi Chick

Hope you have calmed down a bit and are feeling ok. Wow your situation is a bit of a mad one. I have never considered a AVM in the foot, what would happen if you had a bleed there…

Wow the eye problem sounds mad. I think just go with it, what else can you do. I would ask the eye people what exactly is wrong, that way you know, and are not winding yourself up about different issues. What’s your eye sight like now, can you see ok.

You could always go private and have a second opinion.

Please dont worry. The worst thing is worry. Keep yourself busy lean on family and friends. Life is mad sometimes, but you are here, you have to live it. You are stronger than you think people have all sorts of mad things going on, you will grow and adapt if you need too.

Eye sight is over rated any way. Lol.

Hope you are feeling calmer. Please let us know how you are doing.

Matty

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Hey!

Firstly @DickD - thanks for the tag. I don’t check this forum very often because - to be brutally honest - my AVM is dormant and rarely impacts on my life. Plus my music career is taking off a bit, so everything’s focused on that right now :slight_smile:

@Writerchick - this must feel a bit scary. Wyburn Mason syndrome is an AVM around the midbrain and optic nerve. It usually forms in childhood rather than adulthood, but that’s not to say it can’t happen. It is INCREDIBLY rare, with estimates around 1 in 50 million people having it.

Here’s an image of mine from a few years ago. Yes it’s left me blind in one eye (by age 10) but aside from that it’s caused me no other trouble thus far (touchwood).

Perhaps mention WMS at the Royal Free. Funnily enough, I have been there recently because I have an impacted wisdom tooth and they needed to take a high quality MRI scan of the AVM, as there are concerns the vessels could be very near the tooth, which of course would not be good. Did I say ‘no other trouble thus far’? :crazy_face:

Keep us posted.

Dan

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Thank you, everyone, for your super supportive messages and kindness!

I finally got a hold of the letter from the eye specialist to the Royal Free - they currently think it is another AVM (although they aren’t sure), and potentially suspect that if it is, I might have HHT.

I am seeing them again this month (27th), so hopefully will get a few more answers then.

What is worrying me (despite the most likely answer being it is just where the clinic is happening today) is that my appointment on the 27th isn’t happening at the County Eye Hospital - instead, it is happening at a smaller clinic somewhere else. Que panic thoughts of “oh dear god, what are they going to tell me…this is obviously bad news.” (I know this is probably just me overthinking, but that it one thing my brain is very good at doing).

I forwarded the letter from the eye specialist to the Royal Free - but as they haven’t moved my appointment forward, I am assuming it is all good.

My newest worry (not including the whole “what are they going to say on the 27th”) is that if I do have HHT, how will this affect the next steps in treatment? The Royal Free want to put me on the immunosuppressant trial - but I have no idea now what will happen, especially if they investigate and find I do have this issue.

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You’re definitely overthinking it. Just take each step as it comes. My experience with Leicester hospitals is that they basically see you in whatever building the consultant is for that day. I’ve had recent appointments for another thing and have randomly gone to three different hospitals, where, theoretically, it will all somehow join up!

There’s nothing to be gained from worrying about what might be. If you can, follow my approach which is to put off panic until the point they tell you affirmatively you’ve got something that you don’t really want. It kind of works. It’s fair to say that when I self- diagnosed my AVM in April 2016, I did have quite an OMG moment and I took some time to talk to a friend about it but it all pales into insignificance compared with the consultant confirming at the end of August, “You have what we call an arteriovenous malformation…”. I did manage to encourage myself to carry on as normal for those 4 months. After that point… well… different story (and that’s why I’m here!)

Lots of love,

Richard