Yesterday was a doozy!

So, I went to pick up my scan yesterday. The scan, the doc I fired never looked at!! He typed up a letter to me. He said he reviewed my scans & in the one from 2011 (I had double vision & went to the er then) it did show the malformation & it did hemorrhage at that time, although the report says nothing of either.
I was basically discharged & told you’re fine. Aside from the fact that it’s complete malpractice… now I’m even more scared than I was. Now I know my CCM is a repeat bleeder! And my symptoms aren’t getting any better. If anything, at times, they are worse! And determining when I need to go to the er is challenging. I’ve already been twice since I was admitted a month ago & my scans remain unchanged. Just a little lost.


I don’t know if it helps but I’ve been feeling gradually more poorly over the last couple of months as I wait for my embo and yesterday I decided I felt poorly enough to go to the doc.

Saw the doc (my “general practitioner”, I think you call them primary care doctors in the US) today and asked if she would at least listen to my bruit to see if we could determine whether it was still nicely, discretely in my right occipital. Maybe not. The pattern she drew on my head felt quite extensive, much bigger than I thought before, so I’m a bit concerned about mine, too.

These things are big challenges for us but we’re survivors. We’re going to tough it out together.


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Thanks for sharing. And I hope we r both feeling better soon. I just wish this was a roller coaster ride I could decide to get off of… but instead, it keeps on truckin!
It’s a harsh reality that now my life revolves around better my on the phone getting referrals, dealing with insurance & disability crap & going to the er and doc appointments.
Thankfully my sister is flying in from California in a week. My dad is kinda lost, dealing my with all of this. He’s nearly 75 & just spent the last 3 yrs taking care of my mom who was dying of pancreatic cancer. And now this!!
I spoke to a lawyer, and am waiting to see if I have a malpractice case or not. If I do, and win, that will most certainly help pay for all of this crap I’m now paying for out of pocket.
So for now, I suppose we just need to keep on pushing & hope things will get better. Hopefully sooner, rather than later.

A couple quick points:
I spoke with another doctor a couple days ago. This was the second doctor to question my initial neurosurgeon’s recommendation to intervene preemptively with a unruptured AVM. I can’t I can’t begin to express how crazy that makes you feel to have a doctor say to you, basically, WTF was this guy thinking.
The second thing that he asked me was whether I was depressed. I responded “how would you feel if you experience this”. But he said something that’s very interesting. He said when you experiences this type of brain trauma there is a chemical imbalance and that chemical imbalance can lead to our rather make you prone to depression. I just found it interesting that it was not so much the challenges that he was highlighting that can lead to depression but possibility that you have a chemical imbalance in your brain that can make it prone to depression. That’s not my personal battle at this time, as I have too many people counting on me to continue to fight and live. I just thought it was interesting that he highlighted the chemical side of the equation, which I never thought about. Good luck and stay strong.