Hi and my story

Welcome & Help New Member Introductions
1

Hello! I found this community a while ago but I didn’t make an account until now.

I was just a depressed 19 year-old over the past summer. I was an undergrad spending the summer on the campus I hated all for the sake of doing research (because I want to do research as part of my career and also to have something on my resume). I felt alone and unable to be loved. I realized that I was always the one initiating conversations and stopped talking to almost everyone (and thus they never talked to me again). I called my best friend who hadn’t talked to me in months and she said she wanted to cut ties with me and hung up. Simply put, I had little to hold on to.

Starting at the very beginning of July, I would get a light headache in the evening. Okay, nothing to bat an eye at, I’ll just take a couple advil. The headache would go away. I rarely get headaches, but hey everyone gets them now and then.

However, this persisted for 2 weeks. Maybe I’m experiencing them as a side effect of that nasal spray my allergist prescribed for me? It did say in the information that it is a common side effect. Even the nurse confirmed this when I called. I guess I’ll stop the spray and see if I get better.

It’s been 3 weeks since the headaches start and they haven’t gone away. In fact, I think they’ve been getting worse. They happened every day, and now all of sudden the advil stopped working. My dad tried to get me to an after-hours clinic on Sunday, but the doctor just thought they were regular tension headaches and just prescribed naproxen despite my insistence that NSAIDs weren’t working. He said he had no access to any scans.

That Wednesday my dad tried to arrange an appointment with a PCP. My headaches were the worst they had ever been. The nurse told me to get to an emergency room.

So, after lunch, I went. I remember how cold the room was and how the CT room had this pretty picture of a tree and sky in the ceiling (so you would have something relaxing to stare at, most likely).

“They found a mass. An arteriovein-uh, something.” Needless to say, the doctor attending to me was not good at bedside manner.

After being hospitalized for 3 days and having gone through a slew of tests (CT, MRI, MRA while awake), my life changed.

I have a grade 2 AVM on the surface of my right parietal lobe. I am currently being seen by Northwestern doctors and have already gone through 2 embolizations. I will have another on the 10th, and resection on the 29th. I’m confident I’ll eventually be fine. My thoughts on life have changed a lot in the span of the past 4 months. I’m not currently in school this semester, and have slight concerns on going back, but that’s not something I worry about much for long nowadays (actually my biggest worry is surviving the hospital stays, I don’t find hospitals comfortable in the slightest).

I don’t plan on spending much time on this forum, because that could make anyone anxious. But I thought having some form of support from people going through similar things would be nice in the coming months. Nice to be here!

2

Hi Magnolia, I did read your whole story but the above section stuck with me as it sounds a little like me, I to had an AVM but mine was near the surface of my right temporal lobe, So near yours and the good thing about this is that its near the surface which makes it easier to get to, Your positive attitude is like mine and you need to keep this no matter what :slight_smile: , Its too easy to feel sorry for yourself and think why me, But the right attitude will help you recover from this a stronger person. My AVM Removal surgery went very well, 10 hours long !, but I was home after a week so the stay wasn’t too bad. I’ll say this it worked wonders for a diet I lost 18 pounds in a week !. (Hate the food there) , The thing you should think of is that you are in the best place possible to help you and to make you feel better, For example if you have any pain after then they can give you meds that you cannot get outside the hospital, So as they say, just bite down and ride it out. I hope that all goes well for you and please stop by if you can after to let us know how it goes. Thanks

Martin.

3

Actually Martin narcotics make me severely nauseous, and anti nausea medicines don’t seem to fix that :frowning:

4

Hello Magnolia
Welcome to the group. I am glad they figured out what is wrong with you and they have a plan.
Remember to bring your favorite things to the hospital. Also remember to take things slow and to have a goal during your recovering. I know when I first was told that there was no way I could have another rare thing after having a rare stroke and going home and looking it up and thinking yes I have this…then a week later being told I did have it…I freaked out. I was so thankful for this site as I met other people who were either the patient or the care giver.
I too get super nausea from the pain meds I usually have to be given 12mg of zofran into my IV - Please let us know how it goes-
We are pulling for you
Hugs
Angela

5

Magnolia,

I had a grade 3 AVM in the right parietal lobe. In 2013 I had 2 embolizarions and surgery all in three days. The surgery went well and they were able to completely resect the AVM. The only issue I had was left peripheral vision loss, but over the course of a 3 months I regained 90% of it back.

As for recovery I was back at work in 6 weeks. I will tell you that work did help with my recovery as it took my mind off the brain and focused me on other items.

I just had my 3 1/2 year MRI to verify it is gone. The MRI came back clean and I no longer have to do another MRI.

Stay positive and everything will be fine…

6

Hello all.

This past spring, I was sitting at home in the afternoon, waiting for my boys to come home from school (elementary). I had felt funny for about an hour, but did not think much of it, although I had some trouble performing a rather simple task. When they arrived, I found I could not speak… I said “wait…wait,” but could not string a sentence together. It took about two minutes for them to go from laughing, thinking I was joking, to crying, thinking I was dying. But, luckily I have family nearby, and called them, just said “Please come, I need help” and they did.

They took me to the nearest Emergency Dept, where a CT Scan showed a bleed, so they shipped me to Toronto, by ambulance. I remember the ride, thinking “hmmm, I wonder if I’m going to die”. At any rate, once in Toronto, several CT scans, an MRI, angiogram, and being in the hospital for a few days, they told me I had an AVM, and it had bled. I had an appointment set with neurosurgeon, to discuss treatment options, and they assured me that that it was unlikely to bleed again. A few days later, I met with the surgeon, we decided on a craniotomy, and back home.

The next day, it bled again, I found myself on my back in the garden, again waiting for my boys to get home from school. Anyway, once I made sure they were OK, I called an ambulance, back to the local hospital, another CT Scan, which showed the second bleed, bigger hemotoma, and another ambulance ride back to Toronto, straight into ICU. This time my face drooped, right-side arm/leg function impaired (hence the close visual inspection of my garden), and speech further impaired. But, still breathing :slight_smile:

They stabilized me in ICU, put me in an observation room, and on the waiting list for the next surgical opening. One week after second admission, I had a craniotomy. Success.

Day four I went home, the next week back to the Gym (range of motion only, almost no weight), and the week after that visited my family Doctor to have the staples removed.

But, I have spent the ensuing 4 months discovering/exploring my cognitive deficits. I am more affected than I first thought, both emotionally and cognitively. And wondering if I am getting worse, or if my brain/skull are simply remodeling/reconfiguring each other…

Many questions, much to discuss…my first day here on this site.

7

Wow, you dealt with all of that at once?! That sounds really tough.

My AVM is near the sensation portion of my brain, so sometimes I worry that it will get damaged. But I try not to think like that.

8

Hi ebAVM!

You should post your story on your own thread. I’m sure many people will have something to say on your worries about recovery! :slight_smile:

9

Hi Angela,

Zofran doesn’t work on me :frowning: Most nausea medicines don’t get rid of the nausea for long, but mostly they don’t at all. I hope I won’t need narcotics. :sweat:

10

It is normal to worry, just do not let it consume you. Believe in your Doctors and stay strong, it will be fine.

11

Thanks Magnolia. I have already. Just finding my way around here. :slight_smile:

12

Magnolia, Hi.

I’m just at the point of getting headaches The Process of Diagnosis Takes a Long Time so interesting to me in particular to see how promptly you got dealt with. It’s really helpful to understand that it was your headaches that were effectively the trigger for seeking more serious intervention. Thank you for sharing your story.

Richard

13

Hi again Magnolia, that doesn’t sound nice at all, But you have the right attitude, sounds like you are a positive person which is great :slight_smile: , this always helps in the process of treatment or just living your life with an AVM. Take care

Martin

1 Like
14

Thank you for your kind words, DickD. Really I did what I had to as the headaches were preventing me from doing anything. At first my parents thought I just needed new glasses because I hadn’t been to the eye doctor in a couple years and the wrong prescription can strain your eyes. Which is true! But it wasn’t the case for me, optometrist told me my power hadn’t changed since I last visited. I was feeling very out of options and depressed. If the doctors had not found my AVM I don’t know what I would have done.