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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


bastila,so sorry to hear about the AVM bleed.I had/have a cavernoma inside of my spinal cord that when first Dxed they were sure it was an AVM not a cavernoma,and i was scared to death.the thing is,when you have an avm bleed,depending on the extent of damage,you are kind f dealing with the same affectations of what a stroke would be,with regard to needing therepy and relearning things,supringly,alot of this can be relearned so you do have some hope there.are they ever planning on removing this all at some point?or is it in the pons or something that would make it inoperable?This relearning will be as you already know,rather a lengthy and time consuming process,but you can regain some pretty amazing things over time.its too bad that your ins co is stupid,just like mine was after I had my cav removed from my cord and needed alot of ongoing therepy to regain the use of my L hand and my L leg.hang in there and keep pushin along.

now mim,did you have any radiologic type of testing such as an MRI done anywhere/did they do the actual brain at all?since your current neuro does not appear to really care about you and your situation,I would most definitely start looking for another,or even a neurosurgeon.if I had more than just headache issues I would always go with any NS over a neurologist any day.they are just much more experienced in dealing qith actual trauma to the brain type of issues,really.a neurologist has never been inside the brain,except for maybe a short time during med school,where as an NS is inside peoples brains like all the time.

because of my many medical problems over the years,I have had to see both the NSs and the neuros and just from that experience alone,I would always go with the NS.i have a really good one now who is also the one and the only one out of the three I consulted about possible removal of my cavernoma from my cord who I would ever have consented to actually cutting my spinal cord open,trust me.

once a person has had even one concussion during their lives,any more than just that one can cause a whole new set of problems.the more concussions the more likeyhood of more in depth types of problems that could develop.the brain just does not like or respond well to being damaged or traumatized espescially more than once.

the fact that you are showing many symptoms of a whole array of possibile brain injury type issues,your neuro does not appear to see the problems here and that does nothing to really help you out,so why keep this idiot hanging around,you know?find a good NS and go from there.and if you have never had an MRI during this whole ongoing "trearment' period,it is definitely time to get one.if all you have had is just a CT,it would not show any real damage as it just cannot go thru the soft tissue structures like an MRI can.they mainly use a ct to rule out bleeds upon someone hitting the ER with head trauma.never an MRI,just too risky to do without having the whole history of the person being scanned or the possibility(espescially from an accident of some sort)that their could be some sort of metal in the body or an old surgery that used meteal in the procedures that was done before the advent of MRI where most of the metal is okay with MRIs no.

but you do deserve much better treatment than you have been getting with the neuro you have been seeing.
This new doc you are going to see may be able to help with the memory issues and stuff along those lines,but will not be able to actuallydo anything about a possible unDxed brain issue.getting that MRI is very important if for nothing else,at least ruling things out up there as a possibility for your ongoing mentation problems.Please keep us all posted on what you find out,good luck,Marcia





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