I had a bleed in 2003 in my brainstem due to the AVM. Surgery is not an option because of the location, wondering how to figure the chances of another bleed? Also, thinking having children should be ruled out. :-(
Have you been following dandelionwishes's story? If you haven't been, look her up. And if you haven't gotten an opinion from Spetzler, get one. You might get surprising news.
I don't there is a reliable way to figure the chances of your own, personal AVM having another bleed. Pregnancy would definitely increase the risk, though. I wish it didn't.
I would definitely talk to a specialist. Mine is above my brainstem by the midbrain so no surgery BUT I did have the radiosurgery (radiation treatment) last July and it has shown it is shrinking!!!
It can take up to 3 years and you still have the risk of a bleed until it does close but on the other-hand, 3 years goes by pretty fast:)
yay, glad yours is shrinking! I will look into getting opinion from Dr Spetzler also. Thanks for the information
Is there a reason you weren't offered radiation for this? That's the next step when an AVM is inoperable. I am surprised you weren't offered this (?)
I can tell you - the first year after a bleed has a higher risk of it bleeding again. After that it declines but, how much - I don't know.
Otherwise - The average percentage of a risk for a bleed seems to vary from 2 to 4% per year. I have read where some were only a 1%. As you can see, it does vary. To determine your risk of it bleeding without knowing what percentage the dr gave you, is hard to do.
I'm in FULL AGREEMENT to what the others have said. Please see a specialist and see if this can be taken care of for you.
I see where a Ton of people have had radiation treatment and yeah not one time after three doctors offered me this all I have heard is there’s nothing we can do try to live life and not worry. Which I worry everyday! I’m going to make an appointment right away with a different specialist and will ask about radiation. Thank you for the Information! So glad I Joined this site I thought I was the only person who suffered from this. This site has helped me all the way around with educating me on this and emotional support as well.
Oh my gosh! I cannot believe those drs didn't refer you to someone else. That's wrong. If I were you, I would find out which hospitals in your area have a team of drs. who specialize in AVMs and do radiation.
When I had mine treated in 2007. The closest hospital for me was 200 miles away. Which is where I went. Now, there's another hospital that's only 50 miles from me. And they have an entire team of drs. who specialize only with AVMs.
You are right about this sight and the people on it. It's been a blessing for me too. I lived with mine for 20 years all by myself and no one to talk to about it. I just got my first computer 3 years ago. Stop laughing. LOl I used to work and I never thought I needed one before.
It's good to know that we aren't the only ones with this illness and there are people we can talk to about it. I've learned so much on here.. :)
This is your life your talking about so I recommend doing a little homework on what Doctors and Hospital (or Universities) are closest to you. I decided on Shands st the University of Florida. This was a ten hour drive roundtrip and it ended up requiring three trips. (Initial consult visit, angiogram, radiosurgery) ask the hospital about hotels in the area that give a discount for patients, I got one.
I felt I was blessed that a hospital WITH EXPERIENCE on AVM was only five hours away!
My first local Nuero Doctor was NOT a good one and thank God I went and got a second opinion. The second one didn’t hesitate to say “this is serious and something a local hospital can not treat! I will send up the referral to the University”. I had an appointment within a week.
You are your best advocate for getting the best care possible. Its your life, you deserve the best!
we are here for you. And each day is a blessing. And you have your whole life ahead of you
Thanks Dana, I googled that particular hospital it’s about a 12 hour drive one way but it sure would be worth it to get the care I need! I’m in north central WV. I will look at some other options that might be closer at least now I know I have been going to the wrong neurologist. Thank you Kristinryann means a lot!