Brain Aneurysm Support Community

Just diagnosed with AVM & aneurysm--Freaking!

#1

Hi, just diagnosed with AVM with a [up to] 6mm non-ruptured aneurysm. I’m 60 years old and after meeting with the neurosurgeon last week he just wants to watch it. I am scared to even move, thinking I’ll rupture it. I have fibromyalgia, spinal stenosis and a chronic sinus problem, which gives me headaches, neck pain and numbness. I’m really scared that I won’t know if it starts leaking/ruptures. I just found out 2 weeks ago and I stopped all actives, exercising and I’m practically living in a cocoon. Even though I have these other problems, I was still a very active, vibrant person and musician [drums]

I don’t have any idea the size or grade of the AVM or the shape of the aneurysm, all I know is, that it’s behind the right eye.

Also, I have a trip to London in a month. Will be flying over the pond from NYC the UK, should I be flying?
Freaking out!

#2

Hi. I know exactly what you are talking about!! This is normal from everything I read and hear. With me it was just like you described. I learned in 2012. Paralysis from anxiety. Not really fear as much as well… yeah, it is fear. I felt incapacitated mentally and physically. Knowledge is power. Over time I have learned to retrain the way I think. More so the way I dwell on worrisome items. That’s my constant goal. To not focus and dwell on anything I cannot do anything about. This can hopefully happen to you with a little conscious work over time.
However, knowing what I know now, if I was told I had a 6mm BA, I would obtain a second opinion regardless of what the first physician recommended. Regardless.
I know for a fact this: The more people I have spoken with and the more information & knowledge I gain, the more power I have over my own destiny, the more at ease I feel. Good luck my friend and you are never alone.

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#3

To answer your question, I have flown. From 2■■■■ maybe 10 times. From Detroit to Los Angelos and back. I read new info in 2018 about changes being discovered to the brain from high altitudes and decided on my own to not risk it anymore. I will try to find what I read and provide a link if that is OK with this community. Please do research also and share what you find about this. This is a cutting edge topic from what I read. This is important data to me as well.

#4

I’ve had three coilings for one ruptured aneurysm and fly now probably a bit more than before I ruptured. I’m not worried about flying, I did get the ok from my Neurosurgeon before my first flight. I have had zero problems. I do wear some Bluetooth ear plugs that are OSHA approved to keep the sounds to a bearable level.

I think I have a way to help put your AVM and aneurysm in perspective. You were active before you found out and apparently was feeling good given the stenosis, etc. Don’t stop living because of it. I was having a great day when I ruptured. It felt like someone hit the inside of my brain with a wrecking ball in about .00001 second. I am bound and determined to get skills back or develop new skills for things I want to do. I’m 58, ruptured at 53. My family lives into their 80’s and 90’s if they get past their 50’s. I’m more concerned about quality than quantity at this point in my life.

And as many here will tell you, get a second opinion if your that scared.

#5

I agree with previous replies – – you should get a second opinion. Many surgeons stop the watching and monitoring after 5 mm. Try to find out as much as you can about your aneurysm – knowledge is power in this situation. As you do more research, you’ll feel more in control and hopefully the anxiety will lessen. But you have to feel comfortable with your decision, whether it be waiting and watching or choosing surgery.

#6

When is your next scans and check up?

#7

6 months.

#8

They will see new images then and it will be clear what is the best way. If it’s stable and no changes they might continue watching , if its growing , most likely I think they will offer a treatment … the best thing works for me when I feel nervous about it , I do music, I read , walk , get busy trying to distract my mind a lot . Just to be safe avoid alcohol and heavy lifting …
Ps. Second opinion is also an option of course .

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#9

I’m afraid to do anything. Working out, playing drums, even blowing my nose. This is crazy!
Now I’ve been googling about flying. I have a trip planned for late May to London. 7+ hours on the plane. 35k altitude after climbing up to that altitude then descending back down. Only 5 days in England but we’re taking a 7 night transatlantic cruise back. That’s 7 nights out at sea near nothing but ocean! I doubt they have a neurosurgeon in the ships sickbay.

Thanks

#10

It’s first reaction , it’s normal … at the beginning I lived like it was my last day and I didn’t know if I wake up :slight_smile: , later it will settle… If the trip makes you feel nervous may be to change it or adjust?
I would continue to work out but in gentle manner the way you feel safe ( walking , hiking ( but not at the heat )… just do something interesting to have your mind off from the subject…

#11

For me learning a new instrument helped, drawing really takes my mind away in a good way , going to classical music concerts are wonderful

#12

The Coast Guard has helicopters and every ship has a physician that has a phone. When I ruptured, they flew me in a helicopter. I was in our local ER for about five hours I guess and operated on the next morning.

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#13

The cabin on a plane is pressurized. I flew 3 months after a clipping surgery not knowing I had another one growing into a giant aneurysm at the time. I did fine flying! I believe in angiograms they can measure the thickness of the wall of the aneurysm to predict rupture. Of course, nothing is for sure but none of us is promised tomorrow. If I were you I’d live and go to London if your doctor agrees!

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#14

Thanks.
My doctor doesn’t want to do an angiogram at this time. He just wants to watch. I am getting a second & maybe a third option before I go to London in May.

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#15

I have forgotten the stats that my neuro surgeon had but a huge number of people are walking around with aneurysms right now, how often do you have your brain scanned to know otherwise. Yet only some ever rupture, a very small percentage really.

Heavy lifting or straining is about all I needed to avoid for the first while after coiling so unless weight lifting or lumber jack competitor type I would feel comfortable with resuming activity if it were me.

A migraine sufferer for most of my adult life and I can assure you that when it ruptured it left no question as to whether or not things were normal.

I flew within months of coiling without any issues.

On the other hand, having ruptured I am not sure how I would deal with the “wait and see” approach. I sure hope the follow up alleives some of your fears.

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#16

Here’s the stats https://bafound.org/about-brain-aneurysms/brain-aneurysm-basics/brain-aneurysm-statistics-and-facts/

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#17

I didn’t even know what the heck what a Brain Aneurysm was when I had mine at the age of 45. I found out after the surgery that it was leaking and that what was causing the masive headache’s. All that I know is they went in there the next day and put a clip on it. I survived from it all and became a better person from it all. Three months after the surgery I flew on a plane with no problem. I did ask the surgeon first. I am still active with no problems, but, I don’t want to get into a boxing ring either. I still do what I want to do just as long as I remember to protect myself.
I guess the best thing that happened to me was like I said before, ‘I didn’t even know what the heck what a Brain Aneurysm was.’ They told me what they had to do to me to fix the problem and it had to be done now. I had no worries, which I think was the best. After all of what I went through after the surgery took some time and I went back to work doing what I did before. And having a Heaven sent Nerosurgeon and ‘Prayer’s’ helped me more than anything else. If you don’t mind I will put you on my Prayer list.
Take care of yourself and I hope the best for you. Just remember there are allot of us out there thats been there.

#18

Oh please don’t stop living your life. You need to continue whatever you normally do. My neurosurgeon told me to watch my blood pressure and to avoid smoking cigarettes. I also have fibromyalgia and 5mm inoperable aneurysm(s). I was diagnosed 10 years ago. I am 64 years old. I also get sinus headaches. It’s not likely that your aneurysm will start to leak. I was told that 5mm is very small. Hey! Calm down. Go back to being a musician and try to put this thing out of your mind. It’s a shame that your doctor did not reassure you. God Bless you! You need to actually forget about it. I hope I have been of some help to you. ■■■■ Audrey:)

#19

I’m sure I’ll start getting back to normal after the shock of learning about it wears off. Thanks.

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#20

I would definitely get another opinion