Hey everyone,
I have had issues with my right ear since I was born. My childhood was filled with right side ear infections, the appearance of my right ear went from being purple since birth, purple and deformed during adolescence, and started shooting jet streams of blood from veins in my helix when I was 24 which was five years ago. My ear also turned black last year, so there’s that too.
I have been juggled through different specialists with way too many ER visits in between due to prolonged bleeding and seizure activity. I’ve seen ENT specialists, neurologists, plastic surgeons, and finally in the last two months I was set up with AVM specialists who booked a neuro-angiogram. I had the angiogram two days ago, and the results were just posted.
I know I have to to wait to be spoken to, but I’m annoyed and the report suggests that these specialists might not even speak to me. I had deep sedation for the angiogram, and when the procedure was done the specialist on the team who did it came to me to say they saw evidence of an AVM. The report is saying something completely different.
In the report they mention that I informed them that my ear projectiles blood and has been for five years only getting worse with time, meaning bleeding episodes multiple times a day and worsening neurological issues. They took imaging of the right side of my head. The findings state the following:
“Enlarged and tortuous arterial branches of the right superficial temporal artery and right posterior auricular artery centred over the right ear with evidence of tissue hypervascularity (contrast staining during capillary phase). No nidus or draining vein is identified. Differential considerations include capillary malformation vs a hemangioma. Suggest further evaluation with MRI head and neck and ENT referral.”
This is obviously not a report that says there’s nothing going on, and considering my ear literally shoots blood I was told it suggests an artery connection and high pressure and flow rate. Veins and capillaries do not shoot blood like people do in horror movies when their jugulars are cut. As far as I am aware, capillary malformations and hemangioma do not shoot blood? Plus I’ve already had multiple MRI’s for head and neck, and have seen multiple ENT’s so I am extremely frustrated that the only suggestion these specialists have is to send me back to dead ends I already explored many times over five years. The reason I got the angiogram is because the ENT’s and MRI’s said “go get an angiogram”. My head MRI’s showed fluid build up in the entire right side of my head.
Now this test is saying I have enlarged arteries that are “tortuous” and the tissue is hypervascular, but they’re washing their hands of it and sending me away. These people were my last shot at an answer, and instead I’m left with more proof that there is something wrong and nobody wants to deal with it and they all keep sending me back and forth to the same specialists with no signs of coming up with a plan.
I guess I was just wondering if anyone else had results like this, and if them saying “no evidence of draining vein” means there actually isn’t one or they’re just implying that I lied about my ear shooting blood. I have proof of this, and multiple people have been witness to my ear turning into a bloody water gun, so I just don’t know wtf to do anymore. I’m just getting worse and worse, and more and more evidence of problems are coming up and nobody seems to be doing anything. I’m so tired of jumping back and forth with no relief. Starting to feel like I’m just going to spend the rest of my life jumping through hoops with doctors until I die from whatever this is.