Well It all started for me as far back as I can remember. I have been having debilitating headaches since I was a young kind to the point that no medicine would help, I needed a quiet dark place and extra sleep. As I never knew any different I never thought anything of it and just lived with it.
At 15, my father, who was the healthiest person you would ever meet, dropped right in front of me from a leaking anyerism. He was rushed to the hospital where he admitted that he had been having bad headaches for a while, and scheduled for emergency crainiotomy the next day. He died four hours following the surgery.
After the initial shock wore off I began doing all the research I could on anyerisms. I did not understand how my Dad, who to me was invincible, could fall so quickly. Thats when I started getting worried over the headaches that got severe. I started going to the ER when they were really bad. All the ER ever did was give me a quick CAT Scan and say I was fine and send me home. Sometimes they would give me pain killers that didn’t work, but they would always send me home.
When my son was young, probably about four years ago, I FINALLY found a good doctor willing to help find the cause of my headaches because of my Dad’s history. She sent me for an MRI at the local hospital. Of course, the local hospital is crap, its KNOWN for being a bad hospital and I hate it lol, but it was my only choice so I went. They diagnosed me with a STROKE! Immediately I went and called a Neurologist in the next largest city and got an appointment. She sent me for an MRI with CONTRAST this time (the first time they didnt bother with that part) and some other tests and quickly said I hadnt had a stroke, in fact I’d had a venous angioma, not harmful to 90% of people with them, nothing to worry about, and they shouldnt be causing me headaches, she said my headaches were just migraines, gave me meds, and sent me away. The headaches eased but never ceased, but I dealt with them, up until early last year when I started complaining that i could ‘feel pain where the angioma was’. Of course no one believed me, because we were told that you could not feel it. So my fight to be heard started again…
Then the headaches got worse, and I started having partial focal seizures. My doc sent me to a different neurologist as mine had left the area, and he wanted me to get an MRI (just to check on the size of the angioma and make sure it hadnt grown or wasnt pressing on a nerve or anything) and an EEG. Well my GP got the results from the local hospital originally and the report said no change in size of angioma and EEG was fine. As I said though, I don’t trust this hospital so I went and got my MRI films and brought them to my next Neuro appointment. He left the room to look at them and within minutes he came back to tell me ‘its not an angioma its an AVM and I need to send you to a Neurosurgeon right away’ I felt instantly sick to my stomach, yet at the same time relieved that they had finally found the cause of all this. That was last month and because of my insurance I am STILL waiting to hear from a Neurosurgeon to get my appointment, but have had plenty of time to gather all the info I can on AVMs. I realize treatment options are out there, and depending on what my Neurosurgeon reccomends I might change my mind, but I really think because of Dad I will go with the crainiotomy. Its the only way I can be sure its gone for good, and if I don’t do that, I will always always live in fear and freak out every time I get a headache.
I am so glad I found this group. I have no support at home, my family doesn’t know how to process this, so they avoid it or down play it, and I am disabled so I don’t go out much and didnt grow up around here so I have no real ‘friends’ to speak of. Plus I have two young kids, so I have to always put on what I call the ‘happy mask’, I dont want them to know how frightened I am by all of this…
Anyway, thanks for having me here, and thanks for reading my ramblings!
~ Jo
