# Hidden AVM - 14 years post diagnosis and left untreated **URL:** \ **Category:** New User Help\ **Tags:** stories\ **Created:** [September 13, 2026, 8:41pm UTC](https://avmsurvivors.org/t/hidden-avm-14-years-post-diagnosis-and-left-untreated/32348 "2026-09-13T20:41:00Z")\ **Posts on this page:** 4\ **Page:** 1
**Author:** ![Stephtheunicorn](https://avatars.discourse-cdn.com/v4/letter/s/ccd318/32.png) [@Stephtheunicorn](https://avmsurvivors.org/u/Stephtheunicorn)\ **Post date:** [September 13, 2026, 8:41pm UTC](https://avmsurvivors.org/t/hidden-avm-14-years-post-diagnosis-and-left-untreated/32348/1 "2026-09-13T20:41:00Z")
My AVM was diagnosed in 2012, 5 years after I had a scan that revealed my right eye socket being eroded away. By the time the doctors did the correct scan that actually showed my AVM (through the groin) as it doesn’t show up on mri or ct scans there was barely anything left of my eye socket. My brain was literally sitting on my eyeball causing pulsation of my eye. I would look in the mirror and could visibly see the right eye sitting lower than the left. I endured a craniotomy and have a titanium plate but the doctors couldn’t visibly see my AVM when they opened me up, and nothing was done about it. Now 14 years later it’s grown and wrapped around both sides of the plate and I have a cyst in my eye socket that after a biopsy and a 2nd eye surgery still can’t be removed as Neuro decided not to be involved as they couldn’t see the blood vessels linking it to the AVM on my brain as they didn’t do further investigation from the MRI and ct scans.. I feel so let down by the doctors. They handballed me back to ophthalmology instead of a multi disciplinary team. I was told by the ophthalmologist that did the biopsy that the cyst in my eye was growing from the AVM and they couldn’t get it out because it was linked beyond the plate behind my eye. The second surgery revealed that they couldn’t remove the remaining eye socket to get behind my eye as it’s being held on by the screws to the titanium plate. The only good thing about that second surgery is they recorded it and could see that it’s on both sides of the plate and not just in the eye as I have tried telling them to no avail. Now they’re saying they can fix the AVM with one round of radiation oncology. I find it hard to believe as surely they could have done something sooner and I wouldn’t have been left permanently disfigured with psosis post surgery. They’re finally putting my case before a multi disciplinary team as I told them it should have been done from the start. I feel let down as they should have done something earlier on to diagnose the AVM instead of saying they couldn’t figure out what was causing the erosion and then just telling me to find a way to live with it. If they’d acted sooner I might not have lost so much of my eye socket. But even after diagnosis, if they’d done something more about my AVM instead of saying well we couldn’t see it with our eyes so we’re not going to do anything about it and only putting the plate in then I might not still be having issues today. Has radiation oncology worked for anyone else? I don’t understand how they expect to blast it when they can’t even see it on the regular scans. ---
**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\ **Post date:** [September 13, 2026, 9:34pm UTC](https://avmsurvivors.org/t/hidden-avm-14-years-post-diagnosis-and-left-untreated/32348/2 "2026-09-13T21:34:30Z")
@Stephtheunicorn Wow! Lots going on, very difficult ‘journey’ and I think you are rather unique, which may have been why it has been such a challenge overall. There are three main ways in which brain AVMs are addressed – microsurgical resection via a craniotomy, endovascular catheter embolization or stereotactic radiosurgery. In my broad understanding, craniotomy is often used where the AVM is easily accessible without having to disturb too much good brain, embolization is often used as an adjunct to surgery to reduce bleeding and it is increasingly used as a stand alone means of resolving AVMs (but the vessels have to be broad enough to admit the catheter) and then gamma knife radiosurgery is the commonest form of stereotactic radiosurgery to zap the naughty vessels. As far as I can tell, each mode is used a similar amount of time: we have a good spread of patients here who have had each method. Probably the least common art this time is embolization as a stand alone cure but it was how mine was fixed. Gamma knife or other forms of radiosurgery effect a change by sclerosing the vessels: the radiosurgery effectively scars the vessels and causes them to close up over a couple of years. It is not used on larger vessels, as far as I know: it seems to be used on medium to smaller vessels, either because access by other means is difficult or dangerous or, in the case of smaller vessels, because you can’t get a catheter into the vessel. So it doesn’t surprise me that it is being proposed as a mode of treatment for a small lesion. Yes, we have lots of others who have had one or other mode of radiosurgery, so I’m sure you are among friends. Involvement of your orbit is unusual. We have very few members, I think, with an orbital AVM but you are not alone. Welcome to AVM survivors! It’s great you found us! Richard ---
**Author:** ![Stephtheunicorn](https://avatars.discourse-cdn.com/v4/letter/s/ccd318/32.png) [@Stephtheunicorn](https://avmsurvivors.org/u/Stephtheunicorn)\ **Post date:** [September 19, 2026, 4:07am UTC](https://avmsurvivors.org/t/hidden-avm-14-years-post-diagnosis-and-left-untreated/32348/3 "2026-09-19T04:07:46Z")
Thanks Richard, it’s a relief to know that I’m not alone. Sounds like you have gained a lot of knowledge from each type of treatment. It’s been very difficult for me being left untreated because they can’t see the avm in the usual mri/mra ct/cta scans. They discussed embolism but decided against it because they couldn’t see the blood vessels. When they said they could do one round of radiation to fix it I really don’t think I can believe them. I mean how can they know where to target if they can’t see it? The plate is obviously hiding the extra growth but they just fobbed me off and said they can’t see it so we’re not going to do anything.. This is even after the ophthalmologist did the biopsy and saw with his own eyes that it is the AVM. I just feel so let down by the medical system. ---
**Author:** ![DickD](https://avatars.discourse-cdn.com/v4/letter/d/9de0a6/32.png) [@DickD](https://avmsurvivors.org/u/DickD)\ **Post date:** [September 19, 2026, 8:04am UTC](https://avmsurvivors.org/t/hidden-avm-14-years-post-diagnosis-and-left-untreated/32348/4 "2026-09-19T08:04:20Z")
I’m very much with you on the idea that they need to know what they are doing and be able to see what they are doing before fiddling around in your brain. I don’t have experience of each of the modes of treatment myself but I’ve read enough stories on here to be able to summarise. Where I’ve said stereotactic “radiotherapy” I should have used the term stereotactic “radiosurgery”, actually. It is a much more targeted focus of radiation treatment than “radiotherapy”, I believe. One of the things you could consider is to get your scans and reports uploaded to one or more of the major neurosurgery practices in the US and see what their recommendations are. Barrow Neurological Institute in Arizona, or Mayo Clinic at Rochester, or Stanford University at San Francisco have world-leading reputations. I think their charges for a “remote second opinion” range between $100 and $400 last time I looked (which was a while ago, I’ll admit). The other thing I was going to mention is that involvement of your orbit leads my mind towards something called Wyburn Mason Syndrome. We have just two WMS patients here: it’s very rare. My understanding of WMS is that it is not usually treated.