Hello

Hello everyone,
I’m not sure if I’m doing this the right way, I’ve never participated in a group like this. Yesterday, I found out that I have an AVM located near my brain stem, optic nerve, and pituitary gland. My doctor wants to try the Cyberknife procedure, because the AVM is in a location that only a handfull of doctors in the country could get to with any measure of safety. I don’t know exactly what I’m feeling about this right now, but if anyone has any advice it would be greatly appreciated:) Until yesterday, I didn’t know that it was a big deal, so this is all very new to me.

Thanks,
Cassie

Hey Cassie,
I know how you feel… i was just diagnosed with an AVM yesterday aswell. I can’t really give you any advice as I am brand new to this site aswell but to stay positive. In the past… 24 hours I have met so many great people who are always willing to talk and share their stories. Hope everything works out for the best!
Becky

Hey there,
Thank you so much for replying! It’s so nice to know that I’m not alone in this. (At the same time, of course, I’m really sorry you have to deal with it too:) I’m trying to keep my mind occupied, but when I was with my doctor I was in shock and couldn’t ask any questions. Now I’m overflowing with questions. Again, thank you so much. I hope everything works out for you too. What treatments have they suggested for you? Where is your AVM located? (If you don’t mind my asking)

Cassie

Hi Cassie! No such thing as doing this the “wrong way,” so you must be doing this the right way! It’s all new to you, so it’s easy to feel lost and confused, but we’re all here for the same reasons, so feel free to ask any questions or express any thoughts/feelings you may have.

Hi Jake!
Thanks for replying:) I’m pretty scared right now, because until yesterday, they were only concerned about plaque in my brain. It turned out that it wasn’t really plaque at all, but calcification of the vein my carotid is flowing into. I didn’t know that it was a big deal. I don’t even really know what to ask. Are there things I should be avoiding?
Thanks again!
Cassie

Yes, Cassie. You should avoid aspirin, ibuprofen, and antihistamines because they are blood thinners and can cause a bleed. Also avoid heavy lifting. We also have to watch our blood pressure. Oh, and I was told that I cannot have general anesthesia for other surgeries.

Cassie as Becke said you will make meny new friends herethat will be willing to help you. I also had Cyberknife,If you have any questions about that I would be glad to help. TAKE CARE

Connie T is right. Even if your doctor(s) have not already stated, it is a good idea to avoid aspirin, ibuprofen, and pretty much anything that can thin the blood, which includes things such as alcohol, and anything that can increase blood pressure. For example, my neurologist had me eliminate anything that contains caffeine. Also important… Try to get plenty of sleep!

Hi,Cassie
Try and stay calm, stress doesn’t help. I just found out about my avm a few months ago at 49, I’m now 50. I lived until 49 not knowing I had an avm. I had problems through the years that I now know were due to the avm. Mainly headaches and weakness in my leg, hip and arm from time to time. Some temporary paralysis in my arm as well.

I have an avm near my brain stem as well, my doctor is suggesting embolization and craniotomy.
My doctor thinks that is the best way to deal with mine. As you may have already read, every avm is different.
I’m still waiting to hear from another hospital in the area, if they contact me for an appointment before my scheduled angiogram/embolization appointment at HUP, I’ll decide which hospital to go to. After seeing neurology at the hospital I was taken when I bled, I really do believe that I will get the craniotomy. Neurology agrees with the HUP doctor, but they said he is the expert so if they didn’t agree, they would not override his decision. The avm is in my posterior fossa area, it houses the brain stem and the cerebellum. From what I understand, it is a rare place to have a avm. I was told that the avm was on the cerebellum not in so that is why they want to do a craniotomy because once they open me up it is right there. Dr. Zager, the surgeon at HUP said if he thinks he can get it he doesn’t recommend Gamma Knife.
We will talk again after my angiogram/embolization. He said right now he is recommended craniotomy.

I suggest that you make sure you are seeing an avm specialist, it is to rare to see a neurologist who hasn’t seen an avm before.
Take care and let me know what happens.

Peace,
Ameenah