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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


let me
ask you this hon. did they EVER actually bother to simply even DO a contrasted MRI at that c spine and upper T spine level simply considering the 'where" of your upper back and neck pain actually is? the thing here is, unless that 'mass' or whatever the hell it is is actually impacting the spinal cord/column itself, just knowing how certain findings usually impact the areas of what we feel and where? the area that would realistically just kind of 'have to" be somewht involved/impacted here for that would pretty much have to be impacting the actual spinal levels at around the more end of that c spine level or just slightly into the thorasic level? that is why i am wondering if thru out this lil saga, any of these specialists even bothered to simply check out the more likely key areas within your upper spinal?

unless that mass/lesion is realistically more on the 'outside' of that brainstem, it really would be kind of 'odd' to be feeling what you are that far down fromthe brain itself kinda thing??

the one thing i would VERY highly advise to you is to do what i did and get to the nearest actual teaching university hosp around you, or if you live close enough, just cross that border into our wonderful state of MN here and go to the U of MN or even down south to the mayo? this just does NOT in any way shape or form sound at all like anything that should NOT simply be indentified properly in your brain so the very basic "what ARE we even dealing with here" can simply be fully answered? this IS a growing type of lesion or mass type of finding that probably WILL continue to keep growing too that needs to be found out and "something' possibly 'done" to it to put it our of circulation if this just could be some type of the more common vascular types of malformations or just 'do' something FOR you finally? unfortunetly it DOES take actually finally finding that 'right doc' who loves a challange and really just cares about their patients too to really just get the very best overall and 'appropriate" care for what any patient simply 'has? esp within the brain and IN the actual area you also have this too? i do wish i could refer you to the really maazing head of NS at the U of Mn where i saw him, but he did up and retire on me back in 06? but only after actually finding my brain aneurysm first in the still pretty small stages? that man was amazing at simply "picking up" on the little things(and this just IS from experience over many years) that could mean bigger things and that IS what sent me for that ONLY type of scan that even picked that sucker up at all since it was right in the bend of an artery? that MRA was the ONLY scan that showed it. it was thankfully coilable tho and that was HUGE.

i just cannot believe that actually even HAVING something 'solid' in your brain at around that stem level that these docs seem to feel this is nothing, esp while its growing???? but i do think your very best bet would be with the uni teaching hosps where they LOVE to see the more rare/undxed types of things and they DO use them as teaching cases for the NS dept? i just think a facility like this would WANT to dive in and actually ID something that other NS or mere neurologists cannot seem to even grasp the freaking basics of here? that is just a really sick way to treat a any human being, esp having this within your freaking brain as well? is anyone actually even addressing your pain right now like at least a neurologist?

honestly tiff, if this were me, i WOULD definitely go to the uni teaching hospitals just knowing how thery work and the 'team" of NSs you will simply have on your case? calling them and asking to get an appt with the head of NS for an eval on something in your brain that NO OTHER specialist can seem to figure out should get their attention there. this truely IS my very best advice i could give you right now hon. i really DO feel for you in all this. it just sucks when you know and your 'so called specialists' also know that there IS something there, but in all likelyhood, if they have never dealt with it of worse yet have not bothered to even ID that sucker, thats just really a sick thing to do to a patient. ya simply NEED someone who has seen or dealt with what you just have there before. and any uni hosp usually tends to see the poeple who HAVE something odd or rare but keep being blown off cuz no one seems to actually truely understand what it is or means for YOU. so they play it down? this is exactly what occured with my second NS with my spinal cord crap. downplayed to like nothing when it WAS a huge huge something that could have actually paralyzed me? pretty sad ya know? thats why that NEED to get to the most really experienced specialist IS so very highly crucial for you right now tiff. i wish you all the luck in the world with this, and PLEASE do keep me posted. marcia





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