AVM Survivors Network

AVM can no longer be treated.....anyone experienced this?

Unexpected news…
So I moved some months back to GA and had been preparing for new treatment plans with my neurosurgeon and radiation oncologist at Emory University Hospital. After many months of prep testing, I received some not so good news. My AVM is still active after having received gamma/SRS in 2010 and an embolization, I decided to wait the full course and see if it was going to come full circle. Found out though that the AVM is so deep in the center of my brain and the radiation caused much scar tissue… That there’s no option now but to leave it alone. Is it weird that I was actually a little bit relieved that I won’t have to undergo more SRS? I’ll have to just let it be and live my life to the fullest. Has this happened to anyone else??? If so how did you react at first? How do you live your life now? Thanks in advance for responses.

Jessica, I'm sorry to hear this news...Saw that you joined the inoperable sub-group, where you can get support.

You will be in my thoughts and prayers.

Hi Jessica.

My AVM is way down in my Cerebellum but I have known about it for nearly 30 years now. I was always told it could not be treated as it was sizeable and deep down. Surgery was considered way too risky. More recently I was given the option of at least 3 embolisations and then Gamma Knife. But so far I have chosen not to proceed. It seems a lot to put myself through and there is only 50% chance it would be effective. Also my AVM is unruptured and I can't escape the feeling I might 'anger' it. Probably sounds really silly I know but I don't want to tempt fate. Now I'm in my 40s I'm just hoping that I'm past the most dangerous time and that I never have to go through a rupture. I get through life by trying to focus on the positives - my family, friends, work and interests. I try to be thankful for every day I have here. I think this attitude helps me a lot and I'll just have to deal with anything else as it arises. Best wishes to you.

I’m sorry to hear that news but I know there are many here that have experienced this and I truly believe that in the future there will be others methods and technology that will allow it to be treated… God bless!

He Jessica, good to see you here again. When I was diagnosed at age 13, I was was told surgery would not be an option. My only disappointment at that age was I could not play football anymore. Other than the occasional "spell" or bad headache I lived 20+ years with virtually no issues until technology improved enough for treatment in 2009.(AND my symptms warranted treatment) I think you have the right attitude. Live each day to the fullest. Our avms do not define who we are or who we will become. Best wishes, GK

I sent you a message on FB. Put your had over your heart…you are still here for a reason! This past spring I was diagnosed with uterine cancer. When I had the full hysterectomy thru the abdomen…they gave me surgical pneumonia. Ugh! I tell you this much…we are tough! Hang in there. I will be praying for you!

Jessica, Consider talking to Vanderbilt. My mom and sister have both said good things about them and I believe they deal with AVMs specifically there. Won’t hurt to ask. Also, find Dr Spetzler. I understand he is top of the line. Good luck!

Hi Jessica,

I'm sorry to hear about the difficult time you're going through.

Before putting all treatment on hold, have you also considered getting another opinion from somewhere else?

Prior to committing to an intervention, I had visited several well-respected cerebrovascular neurosurgeons from an array of hospitals (eg. Johns Hopkins, NYP). It was surprising how significantly their opinions differed from each other.

Some neurosurgeons are very conservative and do not want to incur the emotional and financial liability of a risky surgery. One surgeon had told me to do nothing and enjoy my life before a bleed occurs. This left me feeling extremely discouraged for a while.

I found that other neurosurgeons seem to gravitate towards challenging cases and are also very transparent with their risk-assessment. The surgeon I chose had pointed out features on the MRI and angiogram that no other surgeon had noticed. I was told to expect a high likelihood of some motor/sensory deficits if I were to proceed with the surgery. There was also a small chance that I would have to use a cane for the rest of my life. Overall, I determined that I could live with those outcomes. 6 months later - after two embolizations and a 12-hour surgery - I only have some left-sided numbness and a slower-typing hand. No cane.

While no one's case is identical, I encourage you to get a few more opinions. In the meantime, I wish you the best!

Thank you Louisa :slight_smile: going to look join up

Hi Lulu. I’ll be keeping you in my thoughts and prayers my friend. Thanks so much for your response and Merry belated Christmas and happy belated new year.

Also…how do you cope? Some days I’m ok and then others, I’m fidgety and a tad bit nervous. I’ve asked myself ‘is this it…?’ Hehe. Idk I just have to cope and get through it and think and be positive. I have an appointment this Friday to see the neurologist about my headaches and stuff.

Thanks Adrian!! I pray that what they’ve come across with mine and so many others, will be a learning tool or put the fire in some hearts of new docs

You hit the nail on the head :slight_smile: thanks so much for your response. I hadn’t logged in since I posted this and when I’m looking at all of the responses I’m a bit overwhelmed. :slight_smile: no matter what, my AVM changed my life for the better. Best wishes to you too

Wow… You’re a fighter. I’ll keep you in my prayers and ask the Big Man Upstairs to watch over you…watch over us all. Hugs

I’ll look into it. I have an appointment this Friday to meet with the neurologist about the headaches.

Thanks so much. Perhaps I’ll do this. I’d explained above to a few other posts that I have an appointment this Friday with the neurologist about the headaches and other pains in my spine and all.

Thanks a lot Jessica. I had a lovely Christmas and New Year. Hope you did too.

All the best