Ok guys, I’m 26 yrs old. I’m new to this. Just got report back. I have a 2cm AVM in my right frontal lobe. It is sitting on my right orbital socket. Any suggestions or comments would help me out alot right now
Hi Casey,
I have an AVM in my right frontal lobe as well. I had ruptures in it 11 years ago and had stereo-tactic radiosurgery. The AVM was bigger than an egg but with surgery shrunk aprox. 80% and I returned to
so-called fairly normal but am still symptomatic and the AVM is now growing again. Please note that my AVM was pretty large and each case is different. But the right frontal lobe is a fairly silent part of the brain and so we have a better chance to keep damamge to a minumum compared to some AVM sites.
Please know that this site is awsome and the people are great. We are all here for you as you continue on this journey. Please keep us updated on your care and health and I am sorry to hear that you have
this AVM and have to go through this.
As for suggestions: keep your stress level as low as possible, stay away from asprin and blood thinning medicines. Find a dr you are comfortable with and lastly— Don’t let this get you down, keep your chin up and live your life for you and dont let the AVM control you – still do things you enjoy (protect your head, of course - LOL)
Please let us know how you are doing and I am always here if you need to talk to someone with an AVM in the same area. There are a couple of others on here as well.
Susan
Welcome to the site. I’m sorry for your diagnosis but know there are options… what did your Neuro say?
Rachel
Susan- thanks for the encouraging words. I’m not real sure what to think about it yet. It’s all really new right now. I go Tuesday to see the nerosurgeon. Dr. Jonathan White at UT Southwestern. I hear is is great. But hears my question. I a guy, I’m very active, play sports, like to ski, ect. Do I need to not do things that would provoke this AVM? The nerologist thinks that during my 3 days of headaches. That I probably had a bleed. But it was too small to see on CAT Scan.
Susan T. said:
Hi Casey, I have an AVM in my right frontal lobe as well. I had ruptures in it 11 years ago and had stereo-tactic radiosurgery. The AVM was bigger than an egg but with surgery shrunk aprox. 80% and I returned to
so-called fairly normal but am still symptomatic and the AVM is now growing again. Please note that my AVM was pretty large and each case is different. But the right frontal lobe is a fairly silent part of the brain and so we have a better chance to keep damamge to a minumum compared to some AVM sites.
Please know that this site is awsome and the people are great. We are all here for you as you continue on this journey. Please keep us updated on your care and health and I am sorry to hear that you have
this AVM and have to go through this.
As for suggestions: keep your stress level as low as possible, stay away from asprin and blood thinning medicines. Find a dr you are comfortable with and lastly— Don’t let this get you down, keep your chin up and live your life for you and dont let the AVM control you – still do things you enjoy (protect your head, of course - LOL)
Please let us know how you are doing and I am always here if you need to talk to someone with an AVM in the same area. There are a couple of others on here as well.
Susan
I go Tuesday to see him again. The first meeting he was very optimistic. He thought surgery would be low risk. But he thought the chance of having problems again would be low risk. So we will see on tuesday. But I’m still having daily headaches. Not migraines but bad nauseating headaches. So I don’t know what to do.
Rachel said:
Welcome to the site. I’m sorry for your diagnosis but know there are options… what did your Neuro say?
Rachel
Hi Casey,
I would advise doing a little background research on your neurosurgeon–his experience with AVMs, his AVM treatment specialty. When you’re thinking about whether to have surgery or leave the AVM alone, make sure you find out about all the options for treating AVMs–traditional surgery, gamma knife (targeted radiation), embolization (different types of materials can be used to fill/block the AVM–this is done through a tube inserted in your leg), or any combination. Some hospitals do them all, and sometimes you have to switch hospitals to find out about another treatment. Good luck on Tuesday!
Jorie