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Spinal Cord Disorders Message Board

Spinal Cord Disorders Board Index

Re: Balance issues
Jan 10, 2011
wow,now that had to hurt. don't feel to badly that you did not connect dots there M. the only reason i knew i even had what were 'signs' of my own herniation had TONS to do with my symptoms just being the almost carbon copy of what my hubby had gone thru, only with his c 5-6 severe herniation like five years before i did my 6-7? and losses with CMS testing i did on myself that were just certain tests we did(usually patients in MVAs and any trauma) while i was working emt/ff ALSO were a huge help? some things you just kinda know aren't 'right' based upon what you have seen, ya know?

i just NEVER ever expected to see a glob of blood vessels sitting smack in my spinal cord when i had that first ever MRI done that was on my c spine? that lil sucker(i was actually born with this glob in there, just had no clue), and three eval/consults(opinions) later is what seriously screwed up MY body when it had to come out only becasue it had bled at least once, per the initial MRI and was going to again. sick surgery tho and the rehab of my lost leg along with trying to 'relearn" how to even use a hand that lost that many fine motor muscles in it.

did they ever do a more immediate follow up on your C spine with MRI post op just to see how things 'looked'? there is one finding that if ANY neural tissue has basically been "deadened off" from too much compression, that will ONLY show much earlier on and then its gone after the inital first few months called "myelomalacia'? it is a process that simply does 'kick in' that takes out of our cords ANY tissue that would otherwise turn into scar tissue if compression had really impacted your spinal cord at all(deeper than just the outter layers)? unfortuently once that initial 'clearing process" takes place, you cannot even begin to tell exactly what even took place or what was 'scared at one time"? its really insane as to how much REAL and at the time in depth 'damage' a person can suffer at that cord level and after a certain period of time, it is simply 'not there' anymore to actually show up on even the clearest MRI anymore. this is exactly how MY cord looks now and did only after my 'year of healing' MRI too? while you could see the area they went in, what was the 'space(still in part anyways) that once held a vascular lesion that was 4x6x8 MMs in size at the two MONTH mark along with that myelomalacia present too per my MRI? all of that very REAL damage, was simply completely GONE at my one year. could NOT believe that one at all. its just how the cord simply does things and that myelo kicking in to clear deadened tissue and get it out of the cord, then that cord trying to 'normalize again(at least in outward appearance anyways). my one year shows what 'appears to be a totally 'pristine' looking cord, even that one side view too that you can actually 'make out' compared to the other segments? just blows me away when all my damage was/is pretty severe now too? i just suffered some pretty impactful and major damage there and nothing?? too freaky.

the biggest 'teller" tho in anyone who has suffered any level of real cord damage is your particular symptoms and what any good NS would simply see as your overall reactions to what are very specific types of hands on testing, mostly with types of testing involving 'evoked stimuli" and how you/your particular body parts just would react to those areas being 'tested'.these 'tests' are all hands on and done with the docs hands only or 'some' tools'. but any level of real cord injury per se, will show itself in some very particular ways. one thing is what is called myeolopathy and things like "clonus' in your ankle(s), and usually whats called 'hyper reflexia", like an OVERLY brisk knee reflex when its simply hit with that lil hammer,compared to the more normal subltle 'bounce out' thats less noticable? which i DO have among other crappy stuff that all just DO tell my physiatrist(he was my amazing rehab doc who i still see from time to time) that i suffered some prety profound deeper level cord damage.

seeing what is a physiatrist, which is a much much more knowledgable type of physical medicine/rehab doc, really can help in better defining ALL of what truely has been impacted in you M. this physiatrist i have, first got me my leg back in the rehab hospital i got sent to directly from the surgical hospital(when i went to actually stand on my L leg after my four required days of lying totally flat, it just completely totally crumbled under me. very scarey) and even can tell specific 'issues/impact" simply by even just watching 'how' we walk? amazing in what he could even tell based on MY bodys reactions to the more in depth type of neuro eval they do combined with my EMGs and him simply already knowing what my post op MRI stated(2 months later) and where my lesion just was and what had to be 'gone thru' just to even try and remove it too?

unfortunetly my 'glob' was NOT at all in what would be called a 'favorable spot' for resection? so i got to make a lovely lessor of two evils decision to leave it in and wait for the next bleed that would more than likely completely close off all of the very tiny remaining "good' cord space then paralyze me from the chest down which would NOT be recoverable. OR i could consent to getting it the hell outta there BEFORE that next bleed but suffer from the severe damage that would happen to my fine motor function muscles in my hands and damage to my legs(these particular nerves were simply very much 'in the way' and would have to be gone thru) that i was told WOULD require me to spend time in a rehab facility to just regain what they could not even tell for certain all that would be lost or damaged, but i WOULD take the 'hits' in those two areas for certain. i did not sleep for three solid weeks i think, just trying to make this insane decision. it simply sucked. but knowing they were going to be monitoring my motor and sensory WAS a huge relief. its 'how' they use it during any cord surgery that lessens the overall risk for the patient actually.

i DO feel very lucky to have had the ONE and only NS who actually had seen over hundreds of what I simply had in my cord(its called a cavernous hemangioma and more commonly seen in ones brain, not the cord?) over HIS well over thirty years as an NS and the head of neurosurgery at the U of MN too? i thankfully got to him very shortly before he was actually going to retire a couple years later. he was my third and "tie breaker" opinion. i KNOW things worked out for me the way they were supposed to be with even getting to this ONE seemingly only real NS i saw who truely understood MY particular spinal crap like the other two i saw soooo did NOT(i had gotten two TOTALLY different opinions from one and two)? lots of damage in me, but dang, things could realistically be soo much worse considering, ya know?

trust me M, if i had ONLY known way back when at the very beginning with MY herniation what i know now, alot of things would NOT have taken place with my inital two surgeries on my c 6-7. who just 'knows' all this crap you are "told" about, ya know? i too would have LOVED to have had a forum/board like this way back then as well. but i CAN try and help others now only BECAUSE of what i had to go thru, so at least some of what i went thru was kinda worth it in certain ways? i do hope things are at least much better than they were pre op for you. but if you do want better definition of overall impact, i would seriously seek out a good physiatrist to go there. they just 'know stuff' you wouldn't believe by doing pretty basic things. marcia

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