sorry for what you are dealing with soapies. i too did have a cavernous hemangioma grow IN my actual spinal cord. unfortuently mine had to be removed(and did leave behind a ton of actual cord damage) only becasue it was bleeding off and on and closing off my remaining cord space. from what i gather, yours has actually kind of 'grown into" your actual vertebrae in some way? just how large is it right now, or as of your last MRI and how long ago was that MRI done?
the ONE big thing you need to know about these little suckers just incase you were not already told this, is that they CAN have a tendency to actually bleed since they are pretty much made up of all veins/vessels? but there ARE only veins with no actual arterial attachment. if there is some level of arterial attatchment they are called something else, so thats a good thing here for you since this IS a low prressure vascular lesion you have and not at all arterial. this just means when/if they do bleed, they only 'ooze" and not pump like an arterial bleed would?
just considering the actual fall you took along with the latest symptoms i really would see your current treating doc for another neuro eval and also a new MRI done on that area just to see if this did or did not bleed at all. its just a precaution since these just can bleed, espescially if traumatized on top of it? you just really do need to know this.
just what other hard findings were found upon the MRI that discovered the hemangioma? anything else like stenosis or bone spurs that were impinging ANY actual nerve roots or hernations that could have become a bit more profound after that fall took place? do you actually have ALL of you ongoing testing results in your possession, including ANY actual MRIs that were done on you? if not, you really really DO need to obtain every single one for YOUR own records that you can just keep in like a nice little expanding folder type thing? it just helps TONS in so many situations to simply have all your own stuff. i bring mine to every single doc and specialist appt i ever have since someone is always asking me particular questions that only my MRIs or other testing results can answer? i just pop into my little file o fun and pull it out.
but for right now, i would seriously obtain another MRI just to really 'see' how everything is in there. i am hoping that this specialist you are being sent to too here is one that actually understands the real true nature of what cavernomas and hemangiomas can actually just do. i had to see three seperate neurosurgeons who were very great NSs who just did NOT have enough experience with MY particular type of problem before i finally found the one and only NS who just had that level of experience i personally needed. this was actually the head of NS at the U of MN. he had just seen and treated/monitored/removed like hundreds of these little SOBS that can grow as in my case, in not only the spinal cord, but the brain too. the more commonly found is where you have yours ,into a vertebrae. i do know that "neckpatient" on the spinal boards also has a pretty large one that encompasses more than just one particular vertebrae?
but DO get that recheck on ypour actual neuro status and the most important thing here,that follow up MRI to check for new problems or changes in the old ones. this really IS the only true way of really knowing how that angioma actually still is and anything else that could have possibly also been injured or made worse with that fall you had. 'something' is most definitely 'different' either in the low back or up at that angioma site/c-t spine level in order for you to have this type of 'new' symptom. its just the way this crappy stuff simply shows itself.
please let me know just what you find out hon. hopefully everything is okay with just some tiny shift in there or something. but you just DO NEED to know what your current status actually is, thats all. FB
