I just had my first embolization and will have one more in a month and then radiation. M neurosurgeon said my AVM is grade 2 and 3cm. He glued off the biggest vein yesterday and will do two other in a month. He feels confident the AVM will be gone within the next two years. I hope and pray.
Rachel
There are many who’s AVM are inoperable and many whose AVM have been successfully treated. I think there is a previous discussion entitled “AVM-free” in case you want to check it out.
Ben (AVM-Free Aug 08)
i am avm free after 2 embolisations and open brain surgery
i am avm free now after embolization and open brain surgery
Hey Rachel,
Stay strong, it amazed me how much strength I had in me. I felt for my family and friends in the waiting room though. I had two embolizations (6 hours each) two days apart and then a craniotomy. I had an AVM in my Left Occipital Lobe. This was all done in May 2000. I recovered really well, I am left with partial blindness, which I knew was likley, bit otherwise good. Just in the last year I have started with seizures but am learning once again to readjust.
It is a hard battle, but one you can take on. There will be good days and bad days but as long as you have a strong support group around you it doesn’t matter. I will keep you in my prayers!
God bless,
Bonnie
Hello Rachel. After a couple of embos, a crainiotomy and a bit of radiation I was told it was “all gone”. You are in my prayers.
Hi Rachel
I’m a lucky one, Ionly had 1 embo and that was mine gone, I had 2 follow up appointments for angiograms to make sure
I had bleed in Oct 06 and didn’t get the all clear letter till a year later, it was a long year but worth the wait!
My husband is AVM free after one embolization followed by a crainiotomy the next day. That was 2 years ago. He was up and out of the house with friends one week after surgery and besides sensitivity to light, slight pain sometimes at incision sight, and being more quick to anger he is perfect! Small prices to pay! I still remember the fear though as if it was yesterday!
I’m AVM free. A Crainiotomy and Gamma-knife surgery.
Well Rachel,
I still live with my AVM inside of my brain. I have been thru two bleedings and three surgeries. And that is all I can get. It is the same size as when they had fount it. But it hasn’t bled in about ten years now. The second time it bled it was about seventeen years after my first bleed. So just got to hope and pray that they hit it with the radiation this last time. Which was in 2003. I had gotten the gamma knife. eeehhhh!!! My last test was last year and it is still there. I will get another test run next year. You know the MRI with dye.
My daughter is AVM free after a crainiotomy.
Yes Rachel I will be hoping and praying for you.
Rebecca said:
My daughter is AVM free after a crainiotomy.
My son is avm free after two craniotomies. You will be free too.
After 2 years, mine were gone. I’ve checked up a couple times since then and so far, I’m clean. I hope you have good luck like I did.
Al
I hope I do too. I have been dealing with my AVM all of my life but when I was eleven I had my first bleed and then the second one in 1998. Like seventeen years after I was zapped the first time. My last zap of radiation was in 2003. And so on so forth but I get tested about once every two years. And ah well it is the same size. Just a golf ball in my head 5cm.
I am AVM free after about 4 or 5 embolizations and open brain surgery…I do have some occasional word finding problems-that is because my AVM was over my word center in my brain. My husband, who is a doctor, says that my word issues are not noticable; 0f course, I do!! Hang in there…you will do great!
I am AVM-free now for about 3 1/2 years. I had open brain surgery on July 28, 2005 to operate on an artery in my left temporal lobe tha was approximately 3cm in diamter. Mine was neer treated by embolization or radiation. You can read my profile for more details, but essentially, I have been out of the doctors’ hands now for almost 2 years (with the exception of an annual follow-up appointment with th neurologist to check on my medications.
I wish you the best of luck!
AVM Free may not be everything you expect. I had open brain surgery in 17+ years ago and I am not the same person that I was prior to surgery. It really depends on the area of the brain that the AVM is located in and your ability to laugh at what life gives you, no matter what. I pray for you as well.
My son, matt is avm free after one dose of gamma knife radiation which lasted for a whole day, but they were determined to get it !! Matt is fine, no deficits, apart from very rarely now losing the thread of what he was talking about, it just goes out of his head, but apart from that, all good. Keep strong and positive rachel. You WILL get there, and you too will be posting on here that you are avm free. “it’s not whats in front of you that blocks your way, it’s whats inside that holds you back”. Much love, chris x
Hi Rachel,
As you can see, everyone’s story is just alittle bit different. Jaclyn is only 12 so her story might not be what you can expect or even try to worry yourself over. She was diagnosed at age 6 after a bleed and had 1 embo a few weeks later. They said they embolized all that they could and that Gamma Knife would be our best next treatment plan as the location of her AVM is inoperable. She had her 1st Gamma in Feb of 2003 and was told we would have to wait at least wait 2-4 yrs to see any change. She had MRI’s every 6 months for the next 4 years and was finally told at 4 years that it “looks to be scaring up” and not to come back for another year! GREAT NEWS! We have 1 year off from a MRI and a drive into the city! The next visit (5 years) we were told again that it ‘looks good’ and to plan a Gamma Knife in the next year so we can go in and ‘finish it off.’ 'The angiogram might even show that we don’t have to do anything and that you are AVM free!" How exciting is that to hear right ?? Well, our hopes were shot down fast. The angiogram revealed that the original location of the 3 cm AVM did disenigrate but another area ballooned out the other side and it’s 9cm!" Holy crap! What was happening !!! They ended up only being able to do Gamma on 1/2 of the AVM and the other 1/2 needs to wait to be done 1 year later. So…here we are 1 year later and it had to be postphoned this past November because she had slight brain swelling. Currently we are scheduled for her 3rd Gamma in April or May. We are hoping to schedule it before the Awareness Walk in May.
My advice to you is to tell you there is no magical answer to how long and if treatments will work. Every case is different and you could be lucky and be cured quickly or …not. That’s why this disease sucks…especially for the little ones of the group. For them, they are still growing and who knows what the heck to expect! Sorry …had to vent … Hope this helps somewhat … ?