Hi,
I would like to share something with you.
As many of you have seen from my posts, I am still struggling to get the correct diagnosis and hoping for a successful treatment that will make me AVM-free and help me get out of this alive.
Over the past year, I’ve had to beg doctors to listen to me and pay attention to my symptoms and sensations. Honestly, I consider myself lucky to still be alive considering how bad I feel.
Eventually, I found a doctor who actually listened and carefully reviewed my images. He raised the suspicion of an arteriovenous fistula. I am scheduled for a new angiography on March 25 to see exactly what is happening in my damaged brain and whether something can be successfully treated.
I truly hope so.
In the meantime, many of you have helped me with advice and have been here for me. You shared your experiences and gave me hope that things will be okay.
I’m writing here because there is no one who understands better than you. And even if it may sound strange… this has affected me deeply.
For about a month and a half, I had been talking to a woman whose daughter was diagnosed with multiple brain malformations. She told me her daughter had undergone an embolization procedure and that they managed to close some of the malformations. Everything had gone well, and she was going to have a second procedure to try to treat as many as possible.
I wished her good luck and asked her to keep me updated when her daughter came out of surgery and was okay.
That didn’t happen.
The woman was a bit strange from the beginning. The reason we started talking was because I had asked her for the contact of the doctor treating her daughter, to ask for an opinion… and she didn’t really want to give it to me. She seemed to think I would contact the doctor and mention her daughter.
I don’t understand the connection or why, but anyway.
Her case touched me deeply. I’m a very empathetic person… believe me, I’ve read so many posts here and cried a lot on this site.
When she didn’t message me with any updates, I thought she was just continuing to be secretive, so a few days after the surgery I wrote to her and asked how her daughter was, saying I hoped to hear good news.
Her reply shook me terribly.
Her daughter had severe complications during the embolization and passed away.
I still can’t believe it. It feels unreal, and part of me still hopes it’s some kind of mistake.
To be honest, I never met that girl. We didn’t even exchange two words. But it affected me so deeply, as if she were my own sister.
I know every case and every person is different.
I know not everyone succeeds, unfortunately.
But it made me think so intensely that I might be one of those cases too, especially after the medical negligence I feel I’ve been through so far.
I know many of you only found out about your malformations after a hemorrhage… but for those of you who found out before — how did you manage not to become discouraged by other cases? How did you not give up? How did you not lose hope?
How did you manage to control all the emotions, the anxiety, and the fear that maybe tomorrow won’t come?
Yes, I know anyone can die at any time… it’s part of life, unfortunately.
But I don’t want to accept that I might die so young and in this way.
I don’t want to accept that my story won’t be a success story. And I can’t keep living with these thoughts.
I need advice.
I need to know how you managed to get through this.
Thank you!
