Join Date: Dec 2003
so sorry about your son,really sorry. i do not normally post in this forum, but just happened to be scrolling and simply saw the dreaded word 'AVM". you stated he 'had" an AVM, so i m assuming wherever it was it wa surgically resected or am i wrong?
unfortunetly when it comes to AVM or any other vascular malformation, location and what 'happens to IT is what relistically will tell what will get damaged or lost,depending upon if it bleeds or is resected out.
just EXACTLY where was his located, in the brain or spinal cord? i was Dxed(per MRI) originally with an AVM inide my spinal cord(did TONS of research on these lil suckers then) which after having an angiogram done, was found to be the venous counterpart(a cavernous hemangioma) to what is the arterial malformation called AVM. mine was/had to be unfortuently resected out of my c spinal cord(right at the C 8 nerve level back in 03 since it was an 'active bleeder"(this is indicated by what is referred to as 'hemosiderin staining") that either surrounds the malf or is somewhere connected to an area of it where it just bled at some point. this is what the neural tissue of both brain and spinal cord will NOT actually absorb like as a bruise does as the iron deposits that are just in our overall blood make up. for some reason(perhaps a needed indicator) even after many years have passed, THIS is how any given doc, even after just a CT, would simply know that at some point, this person suffered at least some form of a bleed in the brain or cord, even if it has been like many years ago.
my surgery left behind alot of damaged areas in my cord and i lost 8 fine motor muscles in my L hand too(hence the lovely typing). it also knocked out my L leg completely. i was trasnsferred to a really great rehab hosp from te U of MN where thankfully for me, a highly knowledgable and experienced neurosurgeon(the head teaching prof with over 30 years of experience) who had not yet retired did my resection at.
depending upon just what specifically became damaged in your son and where(as in within the brain or spinal), and most importantly the 'what' that got damaged and created his current situation is what seriously would give him the odds of getting back what is simply still possible. the one thing i DO know when it comes to esp the hands/fingers is it takes alot of time and dedication to pretty much constantly, everyday, doing the list of ongoing excercises that he was Rxed to do to try ad get the most possible back he can. i got my leg back alot sooner than my hand and some dexterity that i did NOT have at all when i entered that rehab facility.
alot of what is also possible depends alot on levels of damage to specific areas either in the brain if the AVM was located there, or the spinal nerves and tracts, nerve fibers if it was there. but it will alway be a pretty slow going process either way to simply get what is possible considering damage. unfortunetly, that level of damage to key areas will be his determining factor. BUT, time can be your very best friend in this type of situation too,do not ever forget that. if i am still after all this time feeling changes only fom constantly using and also(very critical for me)typing with my hands, who knows ya know?
has he had what is called an EMG/NCV study that just really does check on the overall nerve flow velocities he actually has like in each finger and the hand as a whole? if not, this one type of test would really show what IS there right now, and his docs should be able to tell you just how much is wihin the realm of possible to get back. it basically, among other things, tests both the sensory and the muscle nerve signals to and from the brain and back. i had areas that a my two month post op EMG that showed absolutely no real nerve flow, but now, all these years later, i DO have alot more flow and total feeling back in an area that was once totally dead numb.
unfotuently, as with alot of other things when it comes to the medical world, 'time" really IS on your side in this type of situation. time really has been what has changed MY overall situation esp with once totally" clawed fingers" due to too many lost fine motor muscles that were there when i entered the rehab hosp about two and a half weeks post op.
when you say his hand is 'paralyzed", since he IS doing OT, i am assuming that he must have at least 'something' to work with here as some areas NOT actually paralyzed? if so, what specifically are the still 'moving' areas, and i mean EXACTLY? this does matter. and knowing the specific location of his AVM would help tons to. unfortuently, while i know both you and esp he wants that R hand back and normal, it just may not happen depending upon what was damaged. but kids are sooo very highly adaptable to things in their lives that change(they just learn to compensate much more readily and adapt), so that IS a huge thing in his favor. but knowing certain things would help hon.
one UGE thing here too that you as his mom just NEED to do for him like i did for my son who has been thru medical hell, is obtain every single record, document and clinic note and tesing result that he has with any and ALL docs that have even seen hm up to now. you NEED to gather up, for many reasons, what will be and jut 'is' his overall medical history for him so he will always have it. after so many years, this stuff can be very difficult to retrieve from his angle,ya know what i mean? but YOU lso just need esp the records from that hosp where he had his surgery done. esp what is referred to as the neurosurgeons, or any surgeons 'op notes". this is a transcription of what took place during a surgery. there may have also been what are called 'intraoperative monitoring notes" made by a seperate specialist, usually a neurophysiatrist, who's only job during surgeries done in the brain and the spinal is to monitor that screen after the electrodes get placed pre op on patient, any possible changes in the overall motor and sensory during that surgery. tat hosp would have all of this, or is supposed to have all this inwhat is referred to as your ons' central file'. but i would very specifically ask for the op notes from the NS and the intra monitoring notes too. just to be certain they do not 'forget" those.
sometimes you really DO have to look at the things that 'could have occured" but didn't in order to put the more important things into the proper perspective. having an AVM, just even HAVING one, paces the person at very high risk for sudden bleeds that since they are a glob of arteries under very high pressure, most would actually pass while the docs are trying to actally find that ONE possible bleeder with like 50 to at times a hundred different longer and some shorter arterial roots attatched to these lil S o Bs. this is the bigger reason that AVM is much worse than having an aneurysm(had one of those too in 2005). with annies, you simply already KNOW what/where that ONE single artery is.
please let me know exactly what the overall situation just is with your son, down to what he is ding for PT,and everything else i asked. it WILL help me t help you in the best possible ways. again, sorry your son,and you even have to be deaing with this,marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.