Rowan's Brain Aneurysm

UPDATE TO UPDATE: The hospital I have been working with has upped my estimate from 26,000 to a bit over 122,000. This is a far harder to manage sum and I am crushed after thinking I had thus covered for the past month, but the goal has been updated appropriately.


UPDATE: I recently learned from my doctor that I also am suffering from a venous aneurysm that has thankfully yet to burst, so time is more of the essence than I initially thoight. Doctor's notes are in the updates section!

Toward the tail end of this March, my life suddenly changed for the worse.

 

I woke up and was immediately hit with a bout of vertigo and a splitting headache. The hearing in my left ear was muffled and strange, and I could hear my heart loudly pounding away in that ear. I went to urgent care, where I was told I probably had an ear infection. Little did I know, that was entirely wrong. It was just the start of my journey to a diagnosis.

 

All of those issues have remained constant problems in my life since then. I'm constantly at least a little dizzy and often find myself nearly passing out, my skull generally feels like it's about to split open from pressure, and my hearing continues to get worse while silence has become something I only get to experience while I'm asleep.

 

I worked constantly since that initial diagnosis to figure out what was wrong, sinking most of my savings into it, and came up empty-handed time and time again. It was only in late October that I got a concrete answer. After months of searching and being told I had to live like this, I had an answer and a treatment.

 

 

my brain :)

 

It all comes down to the veins in my brain being, in essence, a mess. I was born with such underdeveloped veins in the right side of my brain that they may as well be absent. This isn't a problem on its own, as my left side has developed to compensate for it.

 

However, my left side, for currently unknown reasons, has begun to narrow in several spots. This is choking the bloodflow in my head even further, and my lack of useful veins on the right side makes this a problem. My brain's bloodflow is strangled, turbulent, and is creating a bunch of pressure in my head. This also explains why I hear my own heartbeat and not much else in my left ear, the primary narrowed vein is right near my ear and is more forceful than it should be.

 

This condition also has potential to increase my risk of brain blood clotting / stroke. Generally, narrowing either gets worse or stays the same. It does not get better on its own, and there isn't really a way to project if it will get worse or not. If mine gets worse, I'm in danger due to my absence of veins on the right side. Therefore, it's something I need to get treated sooner rather than later.

 

There's a light at the end of the tunnel. Via a relatively new procedure, some doctors can place a stent in the narrowed veins in my brain to force them back to their proper width and prevent them from renarrowing. I have already talked to a doctor who thinks I'm a great candidate for this procedure.

 

 

it'll look like this

 

The problem is that this doctor is out of state, and my insurance won't cover this procedure. In addition, though I am at notably increased risk of several potential fatal neurological problems due to this issue, I haven't had a stroke yet (which is... probably a good thing.) This means that this would be seen as an elective surgery, and there is no guarantee I will be able to get a better plan to cover it either.

 

It's very likely that I will have to pay for this out of pocket. But, ultimately, I can't and shouldn't live with this. The symptoms I deal with have upended my life and have made everything far harder for me than it used to be. The constant fear that this could easily get worse is a dark cloud over my life as well. Please help me get my life back.