This week I see a radiation oncologist to discuss a relatively new option to treat cerebral edema that resulted from treatment of my avm with stereo tactic radio surgery, which I had twice. This drug is called Avastin and I guess it was originally for tumor treatment, and I honestly don’t understand how it works for edema right now. But I’ve been struggling with this problem for years now, even though the avm is cured I still have all the similar symptoms.
I’m being treated with steroids and trental now which help some what. But you can’t really take steroids long term not to mention the odd side effects. .
Anyone have any experience with avastin ? Id be very interested in your story.
Hello Josh
I have not heard of this but it sounds interesting. I had cerebral edema for about a year due to five blood clots in my brain. I was on some med that of course I cant recall but it was like a salt pill and I am sure I was on some other meds but I had a massive stroke so those first few months are fuzzy
I just looked up the side effects they dont look fun
How long will you be on it?
Angela
I am also having side effects from edema & radiation necrosis & have been doing some research on Avastin. It was an incidental finding that it can help reverse radiation necrosis. I see my neurosurgeon on Jan 5th & I plan on asking about Avastin for treatment, he is talking about surgery, but if medical management will work I would like to try that first. I will re-post after my apt. Good luck to you, edema and necrosis symptoms are rough!
No, have never heard of Avastin. You can always ask that doctor to provide you the drug's information and details. Also, maybe try one of these discussions, maybe you can find more info and/or find a member who has had Avastin for treatment and ask them about their experiences (bear in mind that when dealing with medicine, one person's experience may not necessarily apply to you, so always ask your doctor).
Hey guys, indeed it is tough to find much about this med online because there is really just a small amount of info about it out there. Yes, there are some cases of people with cerebral edema having great results. But only a few cases to look through. That’s why I thought this website might be a good resource, just because people here might be likely to have gone through it.
I’ll say this , I’ve been hearing that getting this covered by insurance can be difficult. The doctor has decided to start treatment for me as long as it is covered. I will know in the next 3 weeks.
Yes Judy. I know, I the effects of the edema was not much of an improvement over the original thing. Can I ask how far out you are from the date of the treatment?
Thanks for the links.
I had Cyberknife treatment June 2012, first symptoms began around the 9th month & a few weeks of steroids & 8 weeks of short term disability the symptoms improved & I returned to work. Symptoms came back with a vengeance at 26 months but my Neurosurgeon told me I was Fine & acted like I was exaggerating how I felt. I sent my MRI to a Friend of my boss who is also a neurosurgeon & he called my friend & said he could not believe a neurosurgeon had looked at my MRI & not treated the edema & radiation necrosis! Note that at this point that MRI was 3 months old & by now I can barely use my left arm, can no longer use my left hand & am dragging my left toe with every step! I found a new neurosurgeon, started steroids again, had an angiogram for better diagnosis & will follow up for the next step on July 5th.
Wow. so things aren’t fine. . I hate when I feel like I’m getting that feeling from docs, and I have trust me. its either dismissal or they’re throwing their hands in the air. . I would not be complaining if I felt fine, and honestly we often just suck it up and struggle through. Ya know?
I always believe in looking at the most obvious, so with my symptoms , yours perhaps, are a result of that edema. . Besides, I notice a marked improvement when I start the steroids!
Sorry to hear about your deficits . July seems along time off… I dunno. Glad you have a plan at least. 
Question. Did the steroids give you noticeable improvement in your case?
Im sorry, my apt is on Jan 5th not July 5th & yes I do have improvement with the steroids but long term steroid use has its side effects too, not to mention the crazy weight gains! My symptoms are better if I get enough sleep and don't have too much stress at work, so I have my good days and my bad days and still feel blessed that my AVM did not rupture...
I have heard of Avastin being used, however, when I had complications from edema, my neurosurgeon said he wouldn’t treat me with it. I’ve also heard of people being treated with Avastin and hyperbaric oxygen treatment together. Instead I was on Decadron, which I could only handle for one month before the doctors had to wean me. I felt and looked like I was on deaths doorstep.
http://www.avmsurvivors.org/main/search/search?q=Avastin. Maybe something in this link. Good luck!
Hello. I’m sorry to hear you’re also dealing with radionecrosis/edema. I wanted to share that I also have been treated with steroids, in fact I am on them at the moment. I definitely understand the difficulty of being on them. It can be quite difficult!
I told the docs I could hardly take the steroids, but as I came off them alot of the symptoms of the edema returned. So now I’m on a lower dose that seems to be a good in between.
So what’s next for you ? Will the docs try to correct the edema?
Yes.i hear you! Keep up with your sleep, and ill try and do the same.
Oh. Glad it’s January 5th. Hope they can tell you something useful.
A salt pill? That’s a new one to me. Do the docs think it helped?
I’ve mentioned before that steroids were the current line of treatment in my case.
Sorry about the stroke you had, how has the recovery been?
UPDATE: I want to inform everyone that I have been able to begin with the avastin treatment set. I started this week with a 90 minute IV infusion.
I feel very lucky to have this opportunity to try this new med for the radiation necrosis/edema that had been a problem for me for a while now.
I can’t say I feel any noticeable change negative or positive so far. I did have a fairly bad headache 2 days after the treatment. But there is no way I can connect the two for certain, and it went away(pain pills) and didn’t return.
The plan is to return and receive the next dose in 3 weeks, so on, for a grand total of 4 infusions.
I was surprised it’s spread out like so. But that’s just how it has to be. I’ll keep everyone updated on how this goes and if it helps out!
I’ve had two infusions now and I can’t honestly say I notice any obvious positive effects yet. I’m not too discouraged now because I’m only half way through the course of the entire schedule.
However I do feel sort of bad after each treatment so far. More of a dizzy , tired, slightly slow mentally type of feeling. And this slowly improves over the course of a week. I’ve also noticed an increase in headaches lately. I’d describe them as diffuse, long lasting , and mild to moderate in pain level.
Just keep popping the Aleve and excederin !
Thanks for keeping us updated!
I hope the avastin works for you, I had a craniotomy on Jan. 28th to remove my AVM & the radiation necrosis. My neurosurgeon did not think avastin was a good choice for me. He said avastin is typically used to increase blood flow to certain areas & since I had too much blood flow it was not a good choice for my AVM. Surgery went well & I was only in the hospital for 3 days post-op. I still have some left sided weakness but am hopeful this will improve with time & therapy. I think you should ask your doctor about the Aleve & Excederine, both are anti-inflammatory medications & can act as a blood thinner, that is not good for AVM’s, harder to stop a bleed if it happens. I truly hope the avastin works for you!
I have brain radiation necrosis from stereo tactic radio surgery. My AVM was obliterated but seems to have come back. I'll be following as I want to try Avastin too.
update: "He said avastin is typically used to increase blood flow to certain areas & since I had too much blood flow it was not a good choice for my AVM. "oh damnit.
So originally your avm was treated with radiation and then removed later ? Yes I was told avastin increases risks of bleeding, I should mention that I have begun having alot of minor nose bleeds recently, nothing I can’t stop but still unusual.
I believe my avm is considered obliterated so most of my problems are directly from the radiation necrosis.