Hi My name is Marie. I am 34 years old. I have been a member of this site for about 10 months now. But this is the first time I’m posting. I like to read everyone’s stories and know that I’m not alone in the struggle and that there are other people that know, really know what I am experiencing. I have an avm in my right frontal lobe 2cm in size. I first learned about my AVM in early June 2018. I had 2 hemorrhages in June spent most of the month in the ICU. The hospital I was at didn’t know anything about AVM’s and was more harmful than helpful. I haven’t received any REAL treatment or REAL Healthcare in the past 11 months. I am once again going to a new neurologist next week. And cardiologist because my heart is doing so good at this point. I was on keppra for 8months for the seizures. I stopped taking it because of the side effects. I’d rather have mild seizures. I’m on a few meds now. Im a single mom. I still work 50 hours a week. I’ve lost 20 pounds. I look like I’m sick. Im grey and pail. Every day I have to ignore the pain and be strong. I have a laundry list of symptoms do to my avm bleeding. Headaches, paralysis,confusion,fatigue,my personality changed frankly too many to list.I feel like my life as I knew it has been taken from me and there’s nothing I can do but try to change with the changes. Anyway if anyone has any feedback feel free to give it.
Went it comes to neurological conditions those symptoms are fairly ‘normal’ (If you can call them normal). For me one of the hardest things was accepting that change was inevitable. I fought against the change and fried myself both physically and mentally as a result. If you can accept the changes you’ve already won 1/2 of the battle.
Phoenix has one of the best world renowned neurological centres called the Barrow Institute https://www.barrowneuro.org/ I am unsure of your exact location but it may be worth investigating what sort of services they may offer.
Merl from the Moderator Support Team
Hi Marie and welcome, its great you posted! You’ve got a lot on your plate, that’s for sure, before your AVM decided to throw a curve ball at you. It’s good you’ve been visiting the site and we do understand better than most. Merl is right, Barrow is highly regarded in the AVM world and if you get get a referral there it would likely answer a lot of your unknowns. You do have a lot to manage wth the 50 hour per week and single mom, throw this on top and wow. It may not feel like it at times but from my vantage point you have great strength and courage. The trick will be to balance it all, a lot easier said than done. I hope your neurologist next week is positive. I would have a list of questions and “what’s next” ready to go. Take Care, John.
Marie, I feel like I just read my daughter’s story. I’m so sorry for your struggles. I pray that you are able to find a way past the challenges and put your focus on the positive things. I know it can be difficult. I talk to my daughter’s daughter and remind her all the time that we all have to work at not seeing only the struggle in our lives. That focusing on joy is what will sustain us through the pain and sorrow.
You are in my thoughts and prayers.
As someone who had a right frontal AVM…removed and a survivor I would encourage you to get some opinions from experts and look at taking the steps to eliminate this thing and live your life… there is light at the end of the tunnel believe it or not… God bless!
@Marie1023, I will be 29 in August, 21 year survivor from a, What I can figure a left frontal lobe hemage. Had mine just three months shy of my tenth birthday. Have had many encounters. But, the one that still lingers is a twenty year old. That had just found out that her boyfriend at that time had just encountered his ten years later then mine presented itself. Crazy saying it’s been twenty years since that one email that has drove this passion of mine for two decades.