Hi everyone. I was diagnosed with a left frontal lobe AVM on March 8th. I had been experiencing left pulsitile tinnitus for a few years, but it had become maddening. So bad that if others put their ear to my ear they could hear it. I also had headaches. I had been diagnosed with fibromyalgia about 2 years ago and thought it might just be part of it, but with it being so unbearable I told my regular doctor about it and he sent me for an MRI. I had just walked in the door after my MRI when I received a call to hurry up and get to Barrow's Neurological Institute because I had an abnormal mass on my MRI. I hate hospitals and spending the next few hours at the ER freaked me out. I am afraid of germs and getting some illness! I was told about the AVM and sent home to call Dr. Spetzler and Dr. Albuquerque for an appt. Monday morning. Within a week I had an appt. I was scheduled for embolization by Dr. Albuquerque on April 1st and resection by Dr. Spetzler on April 2nd. This has turned my life upside down. I worked full-time and had to take leave with the possibility of disability. I just had my preop this morning. It was not pleasant. I have fragile roll-y veins and had to be poked twice in the left arm with digging around and once in the right arm (which already hurt from the first MRI, since the tech blew my vein). I am scared and nervous as all of us have been who have been through this before. I am at peace though. God is with me and I have faith that I will make it through. I am 38 and a mother of 3 ages 20, 17, and 15. I think my husband is having the hardest time with dealing with this. I will keep everyone posted on my outcome as soon as I am able to get back online.
From what I’ve heard, you have some of the best doctors in the country. I have a friend that travelled from Ohio just for those docs. You are in very good hands.
This is a hard journey, but you will find it is a journey many of us have taken and survived! Keep your chin up. Your family will have a hard time with the fear. I know my family still (almost 5 months later) are still coming to terms with this happening. It takes time. But time heals wounds.
I see a counselor every few weeks to help with the emotions. A friend of mine sends her while family to help them (kids ranging from 2-17 years old). It even helped the youngest understand “mommy had a booboo in her head but the doctor fixed it.” I know yours are older but this is probable terrifying to them.
Anyways, chin up. Remind your family you love them and no sad faces as this is just a curve on Life’s Highway.
I’m so sorry to be reading this at the same time i`m happy to hear your at peace& have faith-never let go of that. Your in my prayers & look forward to read your status, when able to. Take care Frances, -michael
Thank you Erin and Michael. I woke up this morning head hurting as usual. Ready to face the day. I get to wash with the chlorhexidrine soap today. So weird that I am washing with special soap so I can have surgery. I don't know how to ease my husband's stress over the surgery. I am keep telling him that everything is going to be okay and I am going to come out of this better than before, but he is struggling. My kids since they are teens are doing okay, but he is really having a hard time. Any advice?
It’s hard for me to offer advice since was only 12yrs old when had my bleeding. Keep friends&family near by, check into support groups for AVM in particular(I also attend one). Church, priest can arrange to meet you wherever that may be. But I’m still learning as well-24yrs old now, hard times come
I am 33 and have two kid 3 and 8. I found out 31 that I have a avm because I had a stoke. I also have rolling veins. If I did not have Lord on my side this would be lot hard then it is. My husband will not talk to me about all of this. I think that the way he is dealing with this. God has keep me together with all the tests. Hope everything go well.