I had never heard of AVM

Hi, I'm Sandy from southern west virginia! I'm 54 years old and I am very active for an old lady. I run a youth camp and am a farmer/railroader's wife. I have 4 children and am helping to raise a 4 year old grand daughter. I lost my mom and dad in the last 4 years. I can tell you about cancer and strokes and grieving for 2 beloved parents. I am the caretaker, not the one who gets sick until 3 weeks ago. I started having a terrible headache, the "mother of all headaches" about 6:30 p.m. on a Friday night. By midnight I had puked violently and could do nothing, but lay quietly. Light, smells, movement made me sick. My husband came home from work at 3:00 a.m. and asked if I needed to go to the emergency room and I said no. I hadn't been to the emergency room for me, only kids and the husband. Never me! Three hours later, the headache hadn't let up and I had puked 4 more times. I decided I must go the er. No other symptons, just the worst headache I had ever had. The ER doc said the cat scan revealed a spot on my memory and asked if I had trouble with my memory. I have had problems remembering last names and the last words of sentences that has gotten worse in the last 2 years, but I didn't think it was worse than anyone else that was as active as I was or that had been grieving as I had. He gave me shots, told me to start working puzzles and said to follow up with my family doctor in 3 days. The "Mother of all" headaches left, but I have had a small constant headache from temple to temple that won't go away as well a 4 sharp pains in my temples in the 2 days that followed the headache. An mri that was done about 5 days later, revealed a small .8 cm X .9 cm AVM in the left cerebellar peduncle. Focal lesions of bright signal intensity was seen in the white matter of both parietal lobs indicating minimal periventricular small vessel white matter ischemia. I have an appointment at Duke University on July 12.

Here are my thoughts - You've got to be kidding me! My son just graduated from college and is getting married, I don't have time for this. I have about 20 more events planned at the camp this summer. I don't have time for this! My grand daughter is coming home this weekend. I don't have time for this!

1. Will my headache go away?

2. Does all small avm's have to be treated?

I appreciate any feedback!

Welcome to out group, Sandy. In answer to your questions, I'm assuming from your post that you had a small bleed? So that would mean your headache is from that bleed and your brain needs to heal and recover. DId they give you pain medication that is safe for you to take. I hate to be the bearer of bad news but small AVM's are generally more serious than large AVM's because the research says that they have a higher chance of bleeding.

I think what you need is time to get used to all of this. I remember thinking when my son was diagnosed that I just wanted my "old life" back. I wasn't in denial, more disbelief at the seriousness of the condition and that it was happening to MY child. I found there were SO many stages of acceptance that I went thru that first year..... fear, anger, incredible sadness, and definitely lots of grieving for that "old life" before the AVM diagnosis.

You have to understand that you are now going to have to do whatever is necessary to make sure you stay around for those children, grandchild and campers for a long long time. I think once you learn more facts about life with an AVM, you'll realize that the most important thing right now is YOU and your health and everything else will have to wait. We, "mothers" are not good at making ourselves the priority but you just have to!

I hope you have good support people around you and you can educate them on what this all means. I hope you get good doctor care at Duke and if you don't, find it. Make sure whoever is treating you KNOWS ALOT about AVMs. They are rare. You need neuro people with AVM experience....alot of it. Do your research and find the BEST place in your area. SO IMPORTANT! Someone on here will probably be able to help you with that. I'm in Canada so I can't.

Now just take it all one day at a time and let yourself feel whatever you want. It's a process and a journey and it's hard but we are all here for you and I'm sure your family will be too. My thoughts are with you.

Thanks, Joy, for responding to my blog! I hope I made the right choice with Duke University. If it isn't right, I will continue to look! How long have you been on your AVM journey?

Hi Sandy…Joy gave you great advise. Your situation seems quite alot like mine…I was the caregiver, not the patient, however, when I was diagnosed, I found the best AVM Neuro docs in my area…Thank God. As Joy said, it is a journy that you didn’t want, but you can do it. Keep in touch…We’ll all be here for you…Louisa

Dear Louisa, I see that the Doc is the most important item on my journey. I picked Duke because of their reputation, but I see that Duke is #11 on the best Neurology hospital. I pray that God will intercede in the decision. Has your avm been taken care of or are you still on the journey.

Sandy, Joy had some pretty awesome advice. I won’t even try to follow that. But you repeated something in your post that I just had to address. You said “I don’t have time for this”. Funny how life doesn’t seem to care much about schedules. Drives busy folks crazy. I was one of them. My biggest concern before I had the surgery was when I would be able to return to work. That’s a whole other story. Now my industry (student loans) has been turned on its head and there have been many layoffs since my surgery. We probably wont ever know why things happen but they do. Look at this as positively as possible and take care of yourself, This is a wonderful group of people who each has their own story to tell. With each other we will get through this. You will always be in my thoughts.

Sandy, if you’re coming to NC for Duke, may I recommend another neurosurgeon? Raleigh Neurosurgrical Clinic and Dr. Robin Koeleveld. He saved my life. The phone # is 919) ■■■■■■■■. Worth a shot!