Re: AVF/AVF in Spine - does anyone here have this?
if you are really nice,I will let you use the new word I came up with to try and best descrbe just what we feel as far as the bizarre nature of some of the senations along with that wonderul wierd pain."painsations".does that kinda describe what you are dealing with?all of my spinal cord injury related pain and the pain and bizarre sensations that were being caused by my cavernoma inside of my cord before the attempted resection,ALWAYS were some strange/bizarre pain along with some sort of neuro component or vice versa.Honestly i was just so totally unaware of all of the most godawful,bizarre,excruciating 'painsations" that the human body was actually capable of creating.can you actually believe some of the incredible crap that you have been having to deal with in relation to your AVM?
unfortunetly,there honestly really is not any actual way of really knowing just how your symptoms will progress,it is very highly individual.no two are ever exactly alike or ever in the exact same spot or affect the exact same areas of the body.i know that that really was not just what you wanted to hear,but unfortunetly,this is just the way these things are.They suck!the pain and sensations are indeed the hardest part to deal with when you are trying to relate to someone,even your NS just what these all really feel like.for instance,my biggest pain area that was being caused directly from the cav in my cord was this just plain hidious agony kind of underneath my R shoulderblade that felt like someone was actually back there with a crowbar under the blade and trying to pry off the blade itself.interesting,huh/ there was definitely a huge 'feeling' of intense pressure along with alot of pressure/type of pain,like something was actually pushing out the blade from the inside of my body.There must have been some sort of actual pressure really going on there because the only way i got any sort of relief from this is if i actually stood up with my shoulder blade area kind of 'jammed' into the wall?and then I would have to keep hard pressure and actually grind it into the wall.now just how bizarre is that??trust me when I say I do know how you feel here really.it is much easier to explain things if you use the type of description,like i just gave to describe what my shoulder blade pressure/pain was like,try and compare it to something that other people would relate to like i did.you really need to be rather creative at best.i would suggest that you do some research on something like "neuropathic pain descriptions"in a search engine or something along those lines.Or spinal cord injury sensation and or pain descriptions.As you are seeing with your own situatuion,just about ANY sort of pain or sensation is possible when you are dealing with anything that is actually affecting the cord itself.
sorry I couldn't be more helpful to you.please keep me posted on how things are going for you.good luck.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.