So after 45 years, I've finally seen my AVM in all its glory. Wanna look?

Long story short…

I’ve had Wyburn Mason syndrome since around 4 years old. By 10 years old it left my completely blind in my left eye, -7 in my right. It lives in the midbrain and the optic nerve and is incredibly rare. It affects around 1 in 50 million people.

As if that wasn’t fun enough, in 2007 I was diagnosed with Acromegaly - a benign tumour in the pituitary gland (caused by the AVM? We’ll never know). That was successfully removed and I’ve been in remission since.

However, Acromegaly definitely left its mark. One joyous complication is that I have a wisdom tooth lodged in my upper jaw. Now normally you could pull this out, but when there’s an AVM very close by it’s a different story.

This year I’ve been referred to the Royal Free Hospital in London. I live in Bristol so quite a bit of travel, all for about 3 minutes of consultation lol. However it was agreed they would carry out a detailed MRI as they have better equipment than Bristol does. It was also agreed I would see the consultant the same day as the MRI to save me travel.

When I walked into his office, my jaw dropped. The first thing he said was “Do you want to take a picture?” “God yes!” I replied. “This is going straight on Facebook :laughing:”. He said he needs a few weeks to review and consult and he’d get back to me.

Now bear in mind that it’s not clear what’s AVM and what’s ‘normal’ but one assumes the massive bunch in the middle is the AVM, and also around the jaw (hence the tooth concern). I am pretty blown away by it though and it will 100% be my next album cover :grin:

1 Like

There’s a lot illuminated on there! I’m hoping we haven’t frightened writerchick completely (hence, I’m not tagging her)!

I’m glad your WMS appears to be stable and equally glad that your music career is going in a good direction. Very happy to learn a bit more about that!

Ha yes there is! I didn’t consider the impact; happy to remove if you don’t feel it’s appropriate.

My new website has it all: www.rateandfollow.com :slight_smile:

1 Like

Well, it’s very unlikely that WMS will be her diagnosis simply because it is very, very rare and I’m guessing that whatever yours looks like, hers will be very different. It will be useful for other/future WMS members, though.

Is the extent of yours what makes it Wyburn Mason? What distinguishes it from any other kind of mid-brain AVM?

Quick search (I’m still learning exactly what it is too!)

Wyburn Mason’s syndrome is a condition in which blood vessels do not form correctly in both the retina of one eye and a part of the brain. Wyburn Mason’s syndrome is present from birth (congenital) and the cause is unknown. Individuals with this condition may have additional AVMs in other parts of the body, particularly the face.

The symptoms of this condition are quite variable and depend on the size, location, and shape of the AVMs. Affected individuals may have no symptoms or may experience headaches, problems with vision, seizures, or partial paralysis (hemiparesis).

1 Like

That is a lot to see,!it will be interesting to know what is “supposed” to be there. I can relate so much on the picture, there is no way I would have left without one or more! I would buy the album! Take Care, John.

1 Like

Yes quite! I was somewhat taken aback by the magnitude of it when I saw it! I’ll see if I can get more precise images of the actual AVM in isolation.

I know when I saw the radiographer for my first MRI, obviously they don’t let on about what they see: it is for the doctor to receive their report and interpret it, but I did say to them, “Did you see anything interesting?”

“Oh, yes.”

“Are you surprised I’m still walking about?”

“Oh, no.”

And that was all I got to start with but can I say Dan, I think you’re a walking miracle.

1 Like

That is a big boy right there! Now I’ve gotta get a picture of mine so I can share as well :relaxed: I’ve never seen it but my doctor told me that it’s the worst he’s ever seen lucky me lol

2 Likes

Wow! I seen it when you posted it & just couldn’t put what I was seeing into words

Unfortunately, I don’t have a picture of mine. But, I seen it while awake during an angiogram. I came home and drew a picture of it to describe to my wife what it looked like. She saved it & hung it up on a wall. . .But, it’s a baby compared to your picture in the first post.

1 Like