I have read through a lot of the discussions and blogs. I am searching for someone who has had or currently has an AVM in their cerebellum. I am curious about similar deficits of hindrances experienced to better understand what my 16 year old son is experiencing. He had his removed March 28th which encompassed over half of his cerebellum on the left side. He is suffering with some vision problems, balance, memory, left sided weakness, and performing normal daily activities. I wish I could get inside his head to know what he is experiencing or feeling and to know if there is more I can do as his mother to help his recovery process. I realize everyone experience is different but greatly appreciate an info.
God bless!
Hi AJ's mombre',
I currently have a bunch of ?s and have Ataxia, too, which I'm not even sure what type right now so I'm probably not the best one to look at or compare to. =)
Even though I'm unsure of many things currently, I know a lot of the people on here have or had an AVM in the cerebellum...you might do a search as such in the search box by "login" above.
Either way, as you know and stated above, everyone is different in symptoms, recovery, etc. so "comparing" or attempting to mind-read - even though tempting - might prove to be unworthy of your time; however, everyone who posts - no matter where the AVM is/was located has very insightful information to share.
Also, although you're unable to get inside his head, maybe joining the parent sub-group would help in relating to others who are in the same boat.
Hey there AJ’s mombre’,
I had an AVM in my cerebellum removed in October 2006 and it was removed 100%. While that was awesome, the cerebellumm is the center of balance, so removal of the AVM (4 cm) or the craniotomy to remove it caused balance issues, double vision (corrected by prisms), and some numbness in my right arm and leg. While it took me awhile to learn a few things again (like walking)it did not affect my cognition. Everything takes time and patience (even though we are in short supply of both).
Ok, enough of my story. While everyone’s AVM journey is different, you and your son are not alone. I think the founder of this site(Ben) had an AVM in his cerebellum too. He’s currently studying to be a doctor. As far as the best thing you can do as his mom is just to love and support him. Know that he can do and be anything he wants to be and that (as weird as this sounds) its a gift to know what limitations you have before you choose a life path. By the way, I have a BBA, MBA, and working on my second Masters right now. Stay positive mom!
My husband had his avm removed from his cerebellum on Feb 28th after suffering a bleed on the 19th. He has very similar issues as your son. He struggled with double vision initially which is now completely gone. He still suffers from dizziness which we are not sure if it is from the balance issues or excess fluid on his brain (he had to have a shunt placed due to cerebral swelling from the spinal fluid. ) Over the last few months he has moved from a wheelchair, to walker, and now a cane. He prefers that i hold his hand when he is using the cane due to his dizziness. He asks the same questions quite often due to his memory but does not seem to have an impact to long term memory. As of now, he just wants to be able to walk again. I go back to work in 30 days, so am hoping for great progress during this time as he will be alone once i return to work.
He also had severe ataxia on the left side which is slowly getting better. He has his strength just struggles with coordination and controlling his movements.
You may wish to join this sub-group…http://www.avmsurvivors.org/group/parentsofavm
Every member there has a child with an AVM.
While I am certain that it seems like an eternity to you and your son…4 months is not very long in the recovery process. My intracerebral hemorrhage was almost 24 years ago. I have lived long enough to have age related problems with my knee. I went back to work in about a year after the bleed but it really was closer to 2 years before I had my full stamina back.
Your son is now on my prayer list!
I wish there was some way of letting you all know exactly how much your responses meant to me. I literally was crying like a baby earlier. It is so refreshing to hear the progress each of you have made and continue to make. I even shared some of the stories with my son to lift him up and let him know this level he is on is only temporary. He is working so hard and gets frustrated easily. I really feel like it gave him new perspective on the situation and was just what he needed exactly when he needed it. I guess you could say that goes for both of us.
Once again, I am grateful.
Never give up and never surrender is our motto on here! Hugs to your son! While there is life there is hope. It is hard to imagine but when I had my AVM bleed there was only one MRI machine in Atlanta GA. Every hospital got it one day a week…I was wheeled into the parking lot and put into a semi-truck for my one dimensional MRI. I have no doubts that you and your son will live to see amazing to see amazing medical advancements happen!
AJs mom...If you click on the members link you can do a search. Once on the member page, click on advanced search. Go down to the location tab, type in cerebellum and click search. That will pull up every member on the site that has put cerebellum as the location of their AVM. Tell AJ that we're all pulling for him. It's only up from here!
Hi AJ's mombre,
I had an AVM in my cerebellum on the left side too. Mine was glued up and fixed almost 2 years ago coming up in August. If you have any questions, I'd be glad to answer them as best I can. :)
Nicole