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AVM Survivors Network

New here... very anxious


#1

Hi everyone, I was just diagnosed with a 7mm AVM located in the right lateral occipital / posterior temporal lobe AND a 2mm aneurysm located in the left lateral occipital. I am 53 yrs old and have had no symptoms until 3 1/2 weeks ago: pressure inside my head, ‘hearing’ the whoosh of my blood and heartbeat, odd head pains, and head rushes several times throughout the day and night.
I just went through the rounds of MRI’s, MRA’s, and CT scans and I am scheduled for the cerebral angiogram on Friday. I am very anxious and scared with regards to the angiogram and the results thereafter. If anyone has had an AVM my size in about the same location, would you please share with me your story? Also, I am with the Interventional Radiology team at NYU Langone in NYC. Please share any experiences, words of encouragement or advice.
Thank you! So grateful that this site exists.
Ellen.


#2

Ellen

Hello! It’s great to have you find us and I think all of us in your position arrive completely scared. It’s completely normal.

My reading of what you’re telling us is that, while you’ve detected an AVM and an aneurysm, they don’t sound big and scary to me. Less than 1cm AVM is on the very small end of the scale.

I discovered an AVM that was pulsing blood into my transverse sinus on the back of my head and the whooshing noise was playing down both transverse sinuses and past both ears. While the AVM itself was not enormous (I don’t know if about the same size as yours) the amount of blood it was diverting was significant, growing somewhat over time, so I gained dizziness for the most part and began to feel less well over several months.

The angiogram is a great way to get a detailed map of what is going on, in preparation for some intervention. If you want to know more about an angiogram, just say.

The really good news is that there is more than one way of sorting out these sorts of things and it doesn’t necessarily mean having open brain surgery (called a craniotomy). Sorting out an aneurysm may be done using something like a stent (I don’t know too much about aneurysms so can’t remember what the item is called) and that can be administered via a catheter inserted at the groin. Equally, my AVM was literally glued up, again by a catheter inserted at my groin. Radiotherapy is another possibility. I think these methods are much less scary than a craniotomy.

So… It sounds like you’re in the right hands and the angiogram will allow an intervention plan to be drawn up. They’ll explain what it all means and you’ll be able to make your own decision as to what to do about it.

I would say don’t assume you’re in immediate danger unless they are keeping you in hospital. It took me 6-12 months to get to my operation, depending on when you start counting. However, if you have any severe, symptoms, do treat those seriously and no one will tell you off for turning up at the ER if you have anything significant going on.

Hope that helps.

You’re in great hands and it’s great that they are identifying what’s going on.

Very best wishes

Richard.


#3

Hi Richard,

Thank you soooooo much for your response!

I just reviewed the report again and I wrote the wrong size. It is above 1cm… ‘Right occipital lobe arteriovenous malformation with the nidus measuring 1.9 cm x 1.2 cm.’
I’m also worried about the location… trying not to get ahead of myself since I haven’t had the angio yet. The doctor is very calm, however, I think it’s just in his nature.
Again, thanks for reaching out!!!

Best, Ellen.


#4

Hey,

I’ve been there, ok? I worked out that I had an AVM in April 2016, took until August 2016 to see an ENT doctor, another month to get an MRI and another month to get the results back from the MRI… It was soooooo slow it was really unpleasant. I didn’t get to see the MRI until November, all the meanwhile thinking it could be enormous and somehow taking over my brain. It was pretty tiny, I think.

1.9cm is still “small”, I think, so yours isn’t taking over most of your brain, either. However, it sounds big enough and giving you issues enough to pay attention to, so it’s great that you’re getting that attention.

Right occipital is pretty common. There are plenty of people here with a right occip. Mine was described later as a dural a v fistula, in my right occipital area. I had it glued up in April 2017. Yeah, on the UK health service, I was much less at risk than a lot of other patients, so I had to sit in a queue until the April! Not so nice.

So… take heart. Ask anything you want. You’re going to be just fine.

Very best wishes

Richard


#5

Follow up - with what Dick said - if anyone doesn’t take you seriously, screw’em and find a different Doctor. If they don’t take it seriously, they don’t understand it.


#6

Hi Ellen,
I also have an AVM, with an aneurysm. I had a seizure in June, which was the first I knew of anything wrong. Joining this site, meeting people with the same condition as me, has really helped. I am still trying to get my head around things, but I am realising there are many positive outcomes for people like us. Hope it goes well for you and the people here will be able to make you feel better, as they have me.
Best of luck…
Mick :slight_smile:


#7

Hi Ekann8,

Not surprised that you are feeling anxious. I was terrified as I was first diagnosed with a tumour on my spine. By the time I found out that It was an AVF of the spine, my embolism was treated. It’s 6 months into recovery and I have kept my thoughts firmly on what I can do and how I’m steadily progressing. Many of my symptoms, especially the pain, was relieved within days. Some things took longer and I had to do a great deal of research on my own. I was so grateful to find this group. Most doctors will admit not knowing much about AVMs/AVFs except that they form when we are in the uterus. One of my friends made the comment that it must have been my thoughts and emotions that caused my condition. Not at all a helpful remark. Before my symptoms happened, I was at the happiest and most peaceful place ever. Despite being temporarily disabled, I am still happy and peaceful as I work toward recovery. It would be no good for me to tell you not to be afraid. What I will say is that I think I can speak for everyone on this site and we are all with you in hoping for the very best result for you and we’ll be here to support you. All the very best, Lyla


#8

Hi Ellen welcome to the family… put your mind at ease knowing there are many of us here in the same boat and im sure someone will be able to assist with you with your questions… in turn i always tell new comers to keep positive and be strong during the journey as you are not alone and there is light at the end of the tunnel… God bless!


#9

Hi Ellen, I’m new here too and 59. I’ll give you all the support I can but the people here know way more about the technical/medical stuff than me. I had my bleed/2 surgeries when I was 14.(kinda like prehistoric times) What I might be able to help you with is the emotional stuff. I think I’ve made every mistake in judgment in the book so I’m an expert hehehe. But my real qualification is that I’d be willing to listen to you. btw my AVM was in my left frontal lobe. That might be rare b/c in reading a ton of entries here not one AVM is located there. That could also explain why the emotional aspect has been difficult for me. I would love for someone else to chime in. I hope you are keeping it together as best you can.


#10

Hoping your angiogram went ok on Friday?

All the best,

Richard


#11

As frightening as your experience has been, keep in mind that learning about your AVM before it has ruptured is a gift of sorts. We are nearing the 2 year anniversary of my daughter’s rupture for which we had zero warning. She was 9 at the time and the AVM was located in her cerebellum. AVMs in this area of the brain rarely present any symptoms other than bleeds. They are very dangerous though because the blood really has nowhere to go so swelling of the surrounding brain tissue is often very bad. Her brain stem was compressed by the bleed. She nearly died and suffered a severe hemorrhagic stroke that led to 8 months in the hospital. She has had countless CTs and MRIs, 3 angiograms and two craniotomies. Her first craniotomy was emergency and very frightening as the surgeon was going in with only a CT image of the bleed to go on. She also aspirated stomach contents which led to pneumonia. Her second craniotomy which was 15 months later gave us a taste of what a planned procedure is like. The surgeon had an angiogram and very specific MRV/MRA images to plan the surgery with. It was still terrifying to find out that she needed more surgery but at least we could feel confident about the planning. She recovered very well after that operation.

People often say the hardest part of the angiogram is waiting afterwards for 4 hours before you’re allowed to stand up. I hope your procedure goes well and that your doctors are able to provide you with a good treatment plan. All AVMs are unique and I hope yours can be obliterated. The only good AVM is one that is gone!

One last thing to mention is about the size of the AVM. My understanding is that larger AVMs are not necessarily more dangerous though they’re definitely harder to treat. Research has revealed that smaller AVMs are more likely to rupture due to the higher pressures within them. We have no idea how big our daughter’s was though, just that the force of the bleed destroyed nearly half of her cerebellum.


#12

Welcome to the site! the fact that you found it before it ruptured is a blessing. Do your research, ask a lot of questions and get as much information as you can so you can make the right decisions for you.


#13

Hi Lyla, Wow that one about your thoughts/emotions causing your condition is a doozie. “not at all helpful” is an understatement. I like that you’re “still happy and peaceful” as you work toward recovery.
I’m new here but so far your approach is the best I’ve read. I was not a patient patient at 14 years old. The neurosurgeon said I was “madder than a wet hen” after surgery. But he also meant it as a good thing.
We definitely meet different “versions” of ourselves in this journey. I’m hoping the best for you.


#14

Hello @ekann8 I hope your procedure went ok. Sounds like they found it quickly so that is a good sign. Its natural of course to be freaked out and anxious. I was myself. Mine looked like a spider I am afraid of spiders and snakes and thats about it and of course it had to look like one.
Welcome to the group. Its very supportive and so glad you found it!
Hope all is well
Angela


#15

hi yes I have an av fistula,had embo last year in 4 places, now they want to do a craniotomy for the last one, he said its a tiny feeder,i have low bp and not overwight,dont no hether to get it done, he says I have 6% chance of a stroke a year, but the op comes with risks of strokes and blindness, help please, or what questions to ask thanks


#16

Which doctor are you seeing at NYU?