I was diagnosed with an AVM in November of 2012, with no bleed luckily. The neurosurgeon said that it was inoperable because it was located in the thalamus, hippocampus, and in the fibers of my brainstem...too risky. Radiosurgery is the only option, but the possible complications are what scares me when trying to make a decision whether or not to go through with radiation. Has anybody ever had/ known someone who had radiosurgery in these locations? And were there complications or bleeds right after radiosurgery? By the way I'm 18 and mostly healthy.
Hi Riseabovetheashes. There is a search box located on the very upper right hand side of the page…you can type in those words and see what pops up. This is the link to all the sub-groups here…http://www.avmsurvivors.org/groups
You might want to read Ben Munoz’s profile…http://www.avmsurvivors.org/profile/benmunoz
He started this site and now is in Med School!
We are in the same situation as yourself, only my daughter (15 years old) had a bleed from her avm in April last year and the only safe option is gamma knife surgery. We have decided to go ahead with this as the risks of another bleed out-weigh the risks of radiosurgery. It is a hard decision to make as like yourself she is also fit and healthy. Hope this helps.
Hi there, mine is by my brainstem and last year in July I had Radiosurgy because they said to risky for surgery. I am doing great. I do occassionally get some head pains but hope its just the process of it closing up. I am going for an MRI next week to see if any changes yet but its probable to early to tell.
Questions you need to ask yourself.
Can you live with the what if's?
Will you worry about every little headache, every twinge?
What about having kids?
I am almost 41 when I was diagnosed. I was always very healthy. I also thought about not treating mine because of the risk. Then I was told that Radiation was not an option because of the size, surgery is out also. Once these options were taken away I realized I did want it treated. Hopefully embolization is an option and then radiation when it gets smaller. From what I read there is not an increased risk of bleeding after radiation. I would just hate for you to wait and then it increases in size like it has for a couple of members. I have no idea of mine ever changed.
On the other hand there may be better options and more information in the future. Honestly radiation seems the least harmful if it is small.
Thank you for your reply Lisa. I am still deciding, still weighing the pros and cons. I hope that everything goes well with your daughter with no complications. Sending positive thoughts. It's so scary to be going through this so young.
Hi Dana, I have heard before that the head pains after radiation mean that its working. But who knows. Have you had any coordination problems or numbness/weakness? That's what I'm scared about. I don't want to have weakness and not be able to walk or anything. I hope that everything continues to go well for you. Crossing my fingers it's closing up! Thank you for your response.
I want to do it, but I don't. Some of the complications that he told me could happen have scared me, but I'm also thinking "what if I don't do it and it bleeds later on?" But what if I do it and it screws me up? I do have my youth and good health on my side. I need to find out the size of it, if it's smaller it would be less of a risk wouldn't you think? Thank you for your reply.
I have not had any other issues. I am 44 years old
and when I started having some very bad headaches last year
is when it was discovered. I have looked up some of the recent
2012 studies and radiation by the brainstem seems to have a 45%-75%
success rate with one treatment. And they can do it again in three years if it
has not completely closed. It is scary when you first get diagnosed
but it does get better:)
It is a scary time, especially as you have only just found out about this, but it does become easier and you do learn to cope better. Don't think it makes any difference regarding the size of an avm in respect of it bleeding though, Mollie's is tiny and it still bled! All the best of luck to you, always here if you want to chat
I’m totally scared also. It is the so many what ifs. But what if we do nothing? From what I have learned from others on here is even if there are problems almost all overcome them. What if you are by yourself later on and it bleeds? Can you survive it? No one really knows. It’s like we have to choose the lesser evil. You are 20 years younger than me. What happens when you have kids? It is so much more of a decision.
You are young but in a high risk age. Your brain is still young and can overcome so much. What happens if you do nothing and it bleeds during childbirth? Or when you are recently retired at 60? What happens then?
I am so scared also of the unknown. I think we are different because we have a choice because it hasn’t bled yet but it doesn’t make it any easier. The big thing right now is you get to make the choice and decide your future. If it has a high chance of a bleed you may not get to make that choice. If something bad happens now you have the time, resources, and youth to recover.
Where do you live? Have you gotten a second opinion? Just some ideas before you make a decision.
I sooo know how you feel. Those same questions go through my mind all the time. The doctor said that I could do nothing, but that it is guaranteed to bleed because I am high risk. Choosing the lesser of two evils as you said. I wonder all the time, which one will I be more likely to survive? I actually just got a phone call on Friday from the neurosurgeon, they are sending me to a radiation oncologist for more information. He took my case to a panel of neurosurgeons, radiation oncologists, and whatever other doctors involved with this, and they said I am a really good candidate for the radiation. I would think that they would only recommend it if the benefits outweighed the risks, right? I still don't know what to do...
I live in Sacramento...I have seen two different neurosurgeons for this. Both neurosurgeons have presented my case in their weekly conference to other neurosurgeons, radiation oncologists, and other doctors for their opinions as well. I've had responses from both neurosurgeons, stating that the doctors believe that I am a good candidate for radiation, especially since surgery is out of the question. Though I really wish it were operable, I'd much rather do surgery.
That's about the same success rate my neurosurgeon gave me as well. He said they couldn't do it again, but who knows. I've heard of a lot of people getting another treatment later on. I'm glad that you have not had any other problems with the radiation, I"ve heard some horror stories with some people who have had radiosurgery. It's nice to heard of people who have positive experiences!
You are at least in the same state as a great facility. Stanford would be one of my 2 wish I could go to facility. Check out their incredible ratings on here and the successes people have had with doctors there.