I have a moderately large avm and feel it is getting worse

I am reasonably new here, I just want to know if anyone else has/is experiencing symptons like mine.
I have known about my inoperable avm for 13 years and the only sign that I had was that I would become speechless every now and then, but lately I can feel pressure in my brain where the avm is located on the left side and now I am scared to sleep on my left side because I can hear lots of swirls/shunts and it scares me to the point of being afraid to go to sleep,also if I hop up out of bed quickly I have a rush in my head and hear swirling sounds, I also find that when I lie down sometimes I feel dizzy for about 20 seconds.... I had an MRI done about 8 months ago and the report states that I have several enlarged arteries- does this mean the avm is about to blow!! I made an appointment with a neurosurgeon and I have to wait 2 months- I asked the receptionist if I could be placed on the cancellation list and she told me- she has too many people waiting on that list. I am so glad to be part of this forum.

Good morning, I also have a bavm, left frontal lobe. Daily migraines and headaches, eye stabbing, tingly feeling in right extremities, vertigo, hot flashes, etc… I hear my heartbeat and I hear two separate tones, that I hear occasionally and aggravate me :slight_smile: I have mood swings and have felt like something was swimming inside my head on the left side. I can totally sympathize with you and will keep you in my prayers, as I know how needed God’s comfort is :slight_smile:
Keep a pain journal, along with time of day pain started and any thing else bothering me, more nauseous or unexplained arm pain, etc. I know now parties and get togethers trigger my anxiety and cause me to have vertigo, so now my hubby plans the event and I work Indie on something comfortable and go out to enjoy company for a few min at a time. I’m not drained the next three days and my head isn’t as sore. Tell ur Dr about new symptoms and call them back if it is really scaring you. Persistence helps, you are worth the effort! I hope you find some comfort knowing you’re not alone!

Fairy628, I suggest you get on several neurosurgeon's schedules and seek several opinions simultaneously to shorten the wait to treatment. Since you have been considered inoperable, make sure to pick the very best neurosurgeons.

I agree with dancermom. I wouldn't settle for just one neurosurgeon. More than one opinion is always a good idea.

Hi Fairy,

Mine was/is inoperable too. I had gamma knife in 2007 but, it didn't get it all. I'm suppose to go for another treatment but, I don't want to.

Mine was discoverd in 1991. I was good all those years until January of 2007 when I had my very first gran-mal siezure. Along with a constant headache, neck stiffness, and dystonia. That's when I finally agreed to have it treated. The dr put me on a seizure med and that worked for a long time for me.

Just because your arteries are enlarged DOES NOT mean they are ready to bleed. It's not good (of course) but, it's also very common for an artery to be enlarged with an avm.

If you have to wait two months - I would at least request that he look at your MRI and give his opinion of it. Your family dr can request that for you. In the mean time - I would send my records to other hospitals/drs and get there input on it..... That's how I got hooked up with my AVM dr... Who was 200 miles away from where I live. My local neurosurgeon sent my records to other hospitals to get there evaluation of my AVM.

Another thing you may want to consider is seeing a neurologist to to treat your symptoms until you can see a surgeon about it.

Good luck,

Hi, thank you for all the replies- it is so comforting. I have news and am very scared.
I called Professor Morgans office at Macquarie university hospital (Sydney) and after telling them my symptons, they made the appointment the day after. The Professor has told me apart from the large avm, I now have 2 large aneurysms and he will be operating to remove the 3 on the 8th July, he told me the anuerysms are on the outside of the brain and he was confident in removing them, I feel scared because my other brain specialist told me 13 years ago that my avm was so deeply rooted that he would not recommend surgery.
I told the Professor I do not want to end up as a vegetable and would rather die first, does anyone know if you can tell your surgeon that if something goes wrong on the table can they not resuscitate me? Can I ask him to use his discretion? Or is it up to my family?

Can someone tell me if you have pain after brain surgery and why will I have to have a physiotherapist for?

Fairy628, you can choose a proxy to make decisions for you if you are unable to or make a living will: http://www.mayoclinic.com/health/living-wills/HA00014

Be careful when you create the living will. We have a good number of members who were in comas temporarily and made a good recovery afterwards. If they had had advance directives refusing nutrition assistance or ventilation, they might not be here now.

Thank you for your support, I am having my op on the 8th July 2 remove a moderately large avm and 2 large anuerysms in the brain- I am scared, I have the presure in the brain and the slushing which is scary but it seems to hurt if I lie on my left side where the 3 are located- also feel slight nausea and hot flashes- what and why is this happening.

Thank you again

Dancermom- I just found out apart from the large avm, I now have 2 large anuerysms and will have my op on 8th July with the best Professor in the country- Australia

Thank you for your support

Ben I took everyones advice, and am booked for my op on the 8th July, I also found out I have 2 large anuerysms.
Thank you for your support


I don’t know why exactly, I guess the pain and pressure could be from swelling. Th3 hot flashes are no fun, yesterday I was in a hot flash all day, and severe migraine. I guess the area of the brain affected may be around our temperature control lol. July is a busy month! You will be in my prayers, please keep me in yours, July 1 is my appt w neurosurgeon. Stress and heat (outside has been miserable) drain my energy maybe u can write down ur symptoms and find things that make u feel worse? I have cut out soda, caffeine, everything that can worsen my pain. Still have helacious pains. I think brain avms just have wide spread. Range of pain. Good luck!

I also hope you have discussed your wishes with your family, remember that brains are complex and can take time to heal, don’t over do it when you have a good day, just enjoy the moment and remember there is always another day for errands or chores. Frustration is normal but try to treat your brain as a friend, you would be patient and supportive, let it rest, you are a strong woman! You can make it thru this and become a stronger person:)

You have no idea how happy (smiling)I am for you that you are getting this taken care of now. Yay!!

So you know - I have my living will made up that they can still give me Oxygen and fluids if need be. But no heroics and I alway sign a DNR (do not resuscitate) paper when I go in. I also have two power of attorneys appointed along with what my wishes are just in case. I know a lot of people don't like to think or talk about these things but, I like to be prepared.

Good luck to you and you are in my prayers (smiles),