[Deemzee]

Hi Harrison,

Firstly, you're a saint for creating this site. I think I speak for a lot of people going through this for whom this site has been an incredible boost and a profoundly helpful resource. Truly a calm in the storm...so thank you very very much.

The crazy thing with my condition is that I have little or no pain-- some numbness in hands and fingers (not always -- mainly pressure on pointers and thumbs), occasional "stingers" (sensitive spots in hands, fingers, arms, etc that are piercing but random), occassional intra-scapular soreness, and mild neck soreness and limitation. I can't look at fireworks without feeling 'bothered'... but not severe pain. At worst a 3 or 4 during the last three years. I'm barely impacted and can pretty much do everything but there is definite weakness looming and so guitar, gardening, jogging are not as easy... but still very doable. The rub is that I'm told I'm at severe risk for paralysis, bladder, bowels, etc because of the cord compression. Pain (for now, fingers crossed) is not really the issue. Without detailing it all (i've gotten many many opinions) I am opting to stay the course and not get surgery until "it's time". Many doctors I've seen would say that is foolish and that I need something done "before its too late" -- with the threat being that once something appears (loss of balance, bladder control, etc) that it cannot be repaired-- because it involves the spinal cord, it is permanent. A neurosurgeon I trust for a lot of reasons has advised me differently and feels that since this is a problem that has very slowly evolved over four decades (probably the result of a crash at age 12), he guesses that I have a very unique case and it won't 'arrive' so suddenly (unless, of course, I get run over by a bus, or some such thing). It appears for now that my body is tolerating what looks to be a rather severe compression. His advice is to go on living and if "it" comes, we'll have time to deal with it. Bottom line is that a 4-level fusion sucks too and is certainly no guaranteed "solution" any more than the risk of no-surgery right now. My question to all is: for those who have progressive Cord compression, what does the "progression" feel like? Where do you feel it? How did you "get worse"? What do doctors mean by "weakness", is it pain, soreness, or stiffness, limitations? Legs, knees, feet? Tingling, soreness, pain, dull, sharp?? I'm trying to wrap my head around "you'll know when" because I'm not sure I will. I'm curious to hear how it gets worse and what that feels like... and how "you know".

I've attached a still from an MRI and a Radiology report from last year.

Thanks again