Hiya. Recently diagnosed with an AVM in my left frontal lobe. Discovered after being diagnosed as having cluster headaches for the last 20 years by 3 separate neuros. Just got back from having my angio, and it looks like its not bleeding, small and stable for now. This is all very new to me, and Im pretty scared. Putting on a brave front for everyone else, but I feel like everyone has been sugar coating things for me so far. I know this thing is pretty serious, and the worst part are my headaches, which are now constant. I can actually feel the exact spot where the AVM is, not sure if thats normal, but the feeling involves a lot of pain and meds.
I am awaiting a consult regarding cyber knife treatment. Due to the location of the AVM, the surgeons told me that surgery or the glue thing would be a lot riskier than the cyber knife. I was feeling good, until I read on here about the possibilities of paralysis and blindness, since the AVM is smack dab in the middle of my sight,taste, personality, etc sensors. Im usually pretty positive, having dealt with severe pain for 20 years, but I guess Im just a little freaked out now, and wondering what I can possibly do.
After 25 years of migraines, I finally had a doctor agree to order a CT scan last year, which then led to a MRI & my AVM diagnosis & an angiogram to get better scans for planning treatment. Mine is large & in the right parietal lobe. Surgery would have had a high risk of me losing my left field of vision--and I'm a reading teacher.
I've had 3 Gamma Knife Radiation treatments. When I went in for the 1st GK treatment, they did another MRI & angiogram--& found an aneurysm. A month after my first GK, I had a craniotomy to clip the aneurysm--at which time they found (and clipped) a 2nd aneurysm.
Even with having my 2nd GK during the week before Christmas break, I actually took fewer sick days off from work last school year than I have in YEARS because my migranes were less frequent & less intense.
When I had GK in June, they showed me the MRI scans from last June next to this June--the AVM is shrinking. GK & craniotomy isn't pleasant, but I feel much better having done them.
How has it impacted my life? I'm actually a much more positive person--I try to focus on the good things. I do tire more easily & need to get back into the dance studio & drop the 30 pounds I've gained in the past year. And I can't SCUBA. I can still teach, go to dog show, play with my dogs & I can still dance.
Make sure you have a neurosurgeon and/or interventional radiologist that you trust, surround yourself with a good support group of friends & family, and focus on the positive.
Hi Houle, I'm 50 & have a large cerebral avm. In case my experiences are of any use to you:-
I have an avm in my occipital temporal lobe, and had five embolisations followed by gamma knife radio surgery. The treatments went on between 2000 and about 2004 and then they said they'd monitor the avm with mri scans. The outcome of all this is that the avm has not been succesfully occluded, i.e. it's still a significant risk to me, but I'm still around and happy to be so. I had a lot of migraine headaches due to my AVM and they got massively worse due to the treatments. However, they found the "magic bullet" that suits my particular case when then prescribed SODIUM VALPROATE (epilim) and now the migraines are only occasional and very much reduced in severity.
I know the whole thing is a mind-blow, but the best thing you can do is to accept it, and assume that you are going to recover after a short while, try not to stress yourself about the unknown and get on with life as best you can. I have adapted to the mild loss of vision that the treatment caused me, and in terms of personality, I have become a touch more selfish since the medical odysey began, and value quality of life more than anything else. And I'm fully aware of how lucky I am to have got off so lightly sa far.
Basically, if you dwell on your situation you can think yourself into a depression or into a pit of self-pity or extreme stress. All of these things are the OPPOSITE of what you need right now, so keep up that positive outlook. During my stays in hospital all I had to do to see someone who was a lot worse off than myself was to turn my head and look to the next bed.
Hi Houle. Theres nothing you can do to change what may happen - all of this will go to the skilled Neuro who will make the point of the GKR. And of course, the gods sometimes - ive had 3 bleeds on the left side myself over 8 years, all out of the blue.
But the risk is good for you im sure - GKR is out amazing. Ive had 2 doses myself, and ive had 90% of mine destroyed. I never lost any vision, or myself, etc.
Theres always a risk in surgery, but im sure the percentage is good for u, otherwise your neuro consultant would have said no. GKR is quite easy btw - one night at the hospital, and back to work the next.
Thanks everyone. Felling better already. Like I said, Im usually super positive, and pretty used to the pain now, so I dont complain much. I appreciate the kind words though. Im glad I signed up here today.
I didn't even have to stay overnight for GK. I was at the hospital between 5-5:30 a.m. & was released to go home between 3 & 5 pm each time. I wasn't ready to return to work the next day, though. It pretty much wipes me out for the rest of the week. After the 2nd one, I was mopping all of my floors 3 days after GK because I had company coming to visit.
Hi Houle! I'm sorry to hear about your recent diagnosis and this is pretty serious yet the wonderful blessing we all have is thru all of the advancements that have been made with treating AVMs so successfully. You have good reason to be a little freaked out right now, however, please stay positive and keep the Faith that this is now a very treatable condition given the miracles that have been made in our medical field! I didn't realize I had an AVM until I survived a bleed back in Feb of 2011. They performed an embolization on me the night of my bleed to stop the bleeding which ultimately saved my life - Praise God that I landed at the right place where they could treat me. I also had Cyber Knife treatment in June of 2011 vs. surgery to remove the AVM as surger was more risky due to the small size of the AVM. I'm so happy and relieved at the same time to tell you that I was rendered the AVM-FREE report just this past May :) and I did not have any physical deficits or side effects from the emobilization or the CyberKnife treatment. Pleaes feel free to message me with any questions that you may have with the CyberKnife treatement and please try to remain as positive as you can.
Many blessings are heading your way Houle for complete healing!
Hello Houle, your feelings are understandable. An AVM is serious. Mine is on the left side also but its further back than yours in the parietel area and right against my motor strip. Because of this, surgery was not an option. It is also to close to the main artery so it would have more than likely caused my death or at the very least a full on stroke. My only real treatment option was protons beam therapy. I had it on September 2nd of 2009. It took almost two years to cause any changes but it managed to shrink it by 95%. It was orinially 3.5cm in size. Like you, I could feel exactly where it is located and I still feel an irritating pressure there. I still have a handful of small aneurisms also. Its not easy living with the knowledge that these things exist in your brain so your feelings already understandable. All you can do now is try to take it easy as you wait for your consult. You're here for a reason...try to have faith in the fact that God has kept you through this. We are born with this, it doesn't just happen. Its miraculous that you've been sustained although you have this in your head. Take wonder at that. I feel for your pain, I know it hurts. Besides taking pain meds I used intermittent cold packs. Prayer helps, especially while waiting for your treatment. It took six months for my health insurance to approve my treatment because they didn't know how to code it, they had never dealt with an AVM. To say it was hard is an understatement. It was torture. This website is a good place for you to be. You're not alone here. Hang on...I wish you the best and You'll be in my prayers;-).. have faith that it can and will get better.
Believe it or not I know exactly how you feel. I remember the first night was diagnosed with my AVM and I remember reading all the horror stories and feeling so helpless. I can tell you that that are a lot of survivors out there that are doing very well after going through this. I just celebrated my 6 year anniversary from coming home from the hospital and I have done VERY well. This whole situation turned out to be the best thing that ever happened to me. It has brought me closer to God, my wife and children, and even motivated me to climb Mt Whitney and pursue other dreams. I do not know how your procedure will go and I will pray that you have a wonderful outcome. I still have minimal feeling in my left hand finger tips, but I look at those as Gods little reminder of what I went through and how far I have come.
I wish you all the best and will pray for your recovery,