L4/5 tear/bulge and S3,4,5 radiculopathy
I am looking for people who have L4/5 disc injuries but symptoms in their sacral nerves that don't correspond to any normal pattern for that level.
I have a Grade V tear at L4/5, with some posterior bulging but no evidence of nerve compression anywhere. Concurrent with the onset of some acute lower back pain in this area, I lost a lot of sensation, initially in the penis but now in areas of the perineum corresponding to S3 4 5 dermatomes, including areas above the pudendal nerve area. Some altered bowel and urination sensation is noted but nothing critical yet. Right side is worse but is bilateral, and erectile dysfunction/numbness is the primary complaint.
I have herpes genital simplex, which DOESN'T do this, but may account for some sacral nerve damage contributing to a 'double-crush' neuropathy. I can alter pinprick sensitivity just moving my back around. Prolonged sitting makes things much worse.
Pudendal EMG at 5 months was 4.2Right 2.7Left. I am at 22 months now and am in gradual decline, far worse functionally than at the time of the EMG.
I have had probably every test/study in existence (Multiple MRI's of all parts of spine, CT Myelogram, Discogram (with NO test for increased numbness, darn it), MR Neurogram of sacral plexus, a couple of injections), and have found doctors generally don't want to attribute to the torn disc this sacral radiculopathy. Some in person (never in writing, for obvious reasons) will agree that it might be that even though it is completely out of the area it should affect, but taking out the disc (i.e. fusion or prodisc) out on a 'best guess' is nearly as scary as doing nothing and losing all sexual sensation permanently, and possibly facing bladder/bowel issues more serious ahead. While I have some lower back pain, it is low on the visual scale usually, maybe 2-4. If I weren't functionally impotent and numb in the penis I wouldn't be pursuing this yet, probably.
Has anyone run into a situation like this, and if so, what did you do, what was found, how did any surgeries impact this, etc.
I have had some doctors simply deny the disc could be involved, some say maybe it is but you cannot do anything about it, and a few say it may be the disc and you should take it out. The disc is the only known lesion in my spine from my brain to the coccyx.