Just told about this avm do i need to do anything about it?how do you know? love hear from melb aussies

HI I JUST GOT TOLD ABOUT THIS AVM I DONT KNOW WHAT CATERGORY(IF THATS RIGHT) IT IS AND DONT KNOW THE TREATMENT OPTIONS. FROM WHAT I KNOW IT HASNT BLEED(WHO KNOWS THOUUGH)I HAVE VERTIGO AND HEADACHES FOR 3 YRS AND HAD ANOTHER MRI RECENTLY AND WAS TOLD ABOUT THIS, IT WAS MISSED ON THE FIRST.
SO B/CAUSE OF VERTIGO/MIGRAINES I ALREADY FEEL BRAIN DAMAGED AND CANT DEAL WITH THIS.
CAN I IGNORE IT I THINK ITS SMALL,
WHATS THE BEST TREATMENT? IS GAMMA KNIFE SAME AS RADIOTHERAPY?
WHAT QUESTIONS SHOULD I ASK A NEURO SURGEON? THANKS FOR ANY REPLIES IM FREAKING OUT AND CANT TALK TO ANYONE ABOUT THIS

hey there,
You need to get in touch with a neuro surgen to answer all your questions. It is a scary time for you at the moment. I felt the same way when i found out about my AVM, and i had a bleed. The good news is you know of it being there. So, as they say, the earlier you find it the better to treat. The AVM may sit there dormant forever or, if your like me, will suddenly start to bleed. Ask your neurosurgen about everything, from what type of AVM you have to what is best method in fixing the problem. Knowledge is power!! Know that you are never alone through all this. :)

Hi Rebe
As daunting as this is, please don't hesitate to reach out to others on here. There are surgeons throughout australia who will provide you guidance, and a few of our OzNZ subgroup may have contact details of those surgeons or their teams.
I'm happy to recommend my neurosurgeon because of his worldwide reputation, but he is based in Sydney, and he will be honest with you and tell it straight.
Mine was also discovered accidentally, but now its been obliterated - my choice.
Stay positive Rebe, and explore the options - any worthwhile surgeon will present you with the options/choices suitable to your condition.
Tone

Hi rebe!
I know you're scared and wondering what's the best course of action. That's very normal. In reading all the replies here, it seems like the best course of action is asking your doctor a bazillion questions as you get them and them ask again when you have more. Don't be afraid to do that. The doctors just want you to get better. There's also a list of questions on here to ask but like you'll hear over and over, every AVM is different and every situation is unique. So one person's questions might not apply to you completely. This was a discussion I found that was posted back in 2009 (thank you Shalon) but still applies so I thought I would post it for you. Best of luck on your journey rebe and if I hadn't said it before welcome. :)

Reply by Shalon on May 28, 2009 at 12:06pm

... I know this is a super stressful time for you guys. And this site is a great start. Definately make sure you both feel educated about AVM's and the different treatment options. This will help you to start feeling a little more "in control" of the situation and will help you to have the right questions to ask the docs.

Read the stories here, search the forum and blogs for info that relates to your situation. Also, you may search the member tab for your city or state and see what doctors other people have gone to, how they felt about them, what options they were given, etc.

I know this is such a confusing thing to deal with and the range of options/opinions doesn't help at all! Just make sure you have a doctor that you trust and that you feel is well versed in AVM's. These are rare and you don't want some random person who has "heard" of them or treated one or two in their lifetime to be working on Amanda. You want someone who deals with these ALL the time.

Good luck!!!

Hi tone im so happy to find some help with this esp aussies. thank you for reply. I dont know anything about avms. Is the dr you saw at Macquarie? Michael morgan? I dont have private health, b/cause im a disability due to vertigo and a back issue. So now im thinking i might save all my pennies and get it! im thinking of try to get his opinon from melb. i dont know if thats realisitic. If i get health insurance i could wait and fly up for treatment. This is stupid but what is obliterated? is it surgery?glue? gamma knife? thanks again bec

Thanks guys for replying, its nice to talk to others who understand and have this. I really dont know anything about avm. Im frightened of blood test so this has sent me for a 6!! im so gratefull for replys and support. Ive already learnt a bit. i think i need to know what grade i have. Its hard to know if the cure is worse than the condition

Hi Rebe,

"Brain damage" isn't necessarily the way you have to think about an AVM. You've probably had it since you were born, so your brain has grown up around it. Any functions that the surrounding brain tends to handle in other people were taken over by other parts of your brain. You have a complete and functioning brain that happens to have a vascular (blood vessel) abnormality in it.

Having vertigo and migraines now possibly suggests that there's some kind of change in the AVM. Sometimes AVMs recruit another vessel as a feeder, so the size of the AVM increases and presses on the brain surrounding it. This pressure can cause symptoms like what you're having, and treating the AVM has the potential to reverse these. Your surgeon will be able to tell you why s/he thinks you're having these symptoms, what will happen with them in the future, and what you can hope for from treatment.

Aside from the obvious point of treatment--preventing a bleed--the best thing about getting treated is that shutting off an AVM is like closing down a superhighway. All the blood "traffic" that was traveling through the AVM's high-flow vessels will be free to travel through the rest of your brain. So after a successful AVM treatment, the rest of your brain will be getting more blood and nourishment than ever.

If you search this site using the search box on the upper right, you can find a LOT of discussion threads about good questions to ask a neurosurgeon. Bring a notebook and a supportive friend or relative to help you get everything asked, answered, and remembered.

Good luck!
JH

You have to get some new docs ASAP! If you type in Melbourne in the search box you will find people from Australia. I have relatives in Melbourne! GOOD LUCK and DON'T WAIT!

Hi Bec

May I please know if you have seen any INR doctors in Melbourne?

Many thanks.