from doing research and reading people’s stories on this site, it seems to me that many people who suffer avm bleeds do not end up partially paralyzed. i do not know why some do and some don’t; but i seem to see many people’s stories who end up with only very slight weakness or nothing more than a headache surgery and then it’s done. is this the case??? because with me, i was eleven years old at the time of the hemorrhage and have had very extreme left sided weakness (to where i have no use of my left arm and very little of the foot) ever since. it’s been 11 years-am i not working hard enough to overcome it? i don’t understand!!!
Everyone has a different experience. It really depends on the parts of the brain that are affected, the severity of the hemorrhage, and all kinds of other things. If you’re interested in the possibility of change 11 years after your hemorrhage, a good book to read is Norman Doidge’s “The Brain that Changes Itself.” With the right kind of training (and I admit that I have no idea how to find a doctor who can help you do it), different parts of the brain can be recruited to help take over the lost functions.
Hi Elle. As long as you are alive…there is hope for the future. It just might take time for medicine to catch up with your problem. It’s hard to believe but when I had my bleed 22 years ago there was only one MRI machine in all of Atlanta GA. Each hospital got it once a week…it was on a semi-truck. Yes…they wheeled me out to the parking lot to have an MRI done…on a semi truck!!! All these medical options that I see on this site did not exist back then. I know you are frustrated but the key is not to give up!!!
I have hemiparesis on my left side from my avm removal and I liken it to having the muscle memories wiped out or I like to say my left side time-traveled back to when I was a toddler. It’s like somebody else is operating things on that side. I just hope it doesn’t take another 30 years to get back to the level of dexterity I had before, but maybe it will. Or maybe it won’t, I don’t know how the wiring works in there, but it is slowly improving. Playing Wii and guitar seems to help a little. The only barrier is when I forget to actively use it in my day-to-day activities and my arm just sits there. I heard that they put casts on kids’ good arms (“forced casting”) and the weak arm eventually gets its strength back.
My AVM was in my left temporal lobe, which is more of a logic function area of the brain than an area that manages muscular control. That being said, my craniotomy did result in me losing exactly half of my vision from each eye, and even more of a surprise, partial numbness of my right foot. Also, my sense of balance, which was once exceptionally good, is now diminished to the point where I cannot stand on one foot with my eyes shut. Come to think of it, I even have a hard time balancing on one foot with my eyes open.
I do not understand an AVM well. I am a 47 year old M from India. What I had suffered was a Main Cerebral Artery Aneurysm of the right side. It was successfully clipped endoscopically, however, one week post surgery I suffered a vaso-spasm leading to hemi-paresis. In the last two years plus I have regained about 70% of my functions without the loss of any major function or ability. Apart from physio-therapy, I also took recourse to a few Ayurvedic treatments like massage with medicated oils, acupuncture and recently even Yoga exercises. While there have been ups and downs, overall I feel I am recovering well. My neuro-surgeon, physio-therapist and physician are all quite satisfied with my progress. May I recommend you hire the services of a Yoga Instructor and begin with ‘Suksham Vyayam’, basic exercises for hemiplegia. You could even check out website of Patanjali Yoga by Baba Ramdev. It would appear to be slow acting but it is sure and curative from inside. Please feel free to mail me your querries or doubts. ■■■■■■■■■■■■■■■■■■■
I have balance problems too. In physical therapy we used the Wii. I have found this the best thing to help with balance. It actually shows you where your center of gravity is and has yoga exercises, like standing on one foot. During the exercise it shows your center of gravity too that way you know exactly how to fix it and get better balance
Jake M said:
My AVM was in my left temporal lobe, which is more of a logic function area of the brain than an area that manages muscular control. That being said, my craniotomy did result in me losing exactly half of my vision from each eye, and even more of a surprise, partial numbness of my right foot. Also, my sense of balance, which was once exceptionally good, is now diminished to the point where I cannot stand on one foot with my eyes shut. Come to think of it, I even have a hard time balancing on one foot with my eyes open.
Hi Elle!
It all depends on location and severity. My stroke and surgery left me completely paralyzed on the left, including the face and neck, so I couldn't eat or even sit for quite some time after being in the ICU. I did get a lot of movement back, but have no control of my foot and can't open my fingers. Our brains can re-wire, but it takes hard work, time and a bit of will to force yourself to use the side. Please add me as a friend and we can talk more about this:)
Take care,
V
Like others have said, it depends on what part of your brain was damaged. Me, it damaged the area that controls the movement of my right side......at first I couldn't even feel my right side....with time sensation returned and I can now move my arm (although with very poor strength) and my leg enough to walk with a cane, although I have 0 movement in my ankle or my toes. It is hard work, and gains do occur even after several years. I know this not from personal experience, since I am qualified as disabled for less than a year, but from family of friends who had non-avm related strokes and time really had a positive impact. My advice is to just hope for the best, learn to live a happy and full life even with your disabilities, work hard in your rehabilitation, never ever lose hope, and move on with your life.
It's funny that you said this back in 2010 because in 2010 (when I last had health insurance) I had an MRI done at a clinic but they made me go to a semi parked outside as well. Thought that was strange till I read this...lol.