Guest guest Posted June 14, 2001 Report Share Posted June 14, 2001 Hi - I have the same symptoms you describe except the burning isn't in the calf of my legs, it is in my thighs. I have never been diagnosed with tethered cord, only ACM 1 (7 mm). No surgery yet. Still looking for a knowledgeable neurosurgeon. Friends in Pain Edith KY On Thu, 14 Jun 2001 20:34:23 +1200 " " writes: HI all, I was wondering if anyone in the group can relate to my nerve pain as I feel a little bit isolated on this one. I have had a shocking morning with pain until using my pain-killers, and diazepam for my muscle spasm. On medications I feel about 75% human, off them 0% quality of life. My pain is down my lumbar spine, and into both calf muscles. It is a 'burning' throbbing, tingling sensation, and without doubt the worst pain I've ever had before this whole tethered cord thing resurfaced 9 years ago. The pain levels have increased gradually over my years of misdiagnosis to a level now that I would not even wish on an arch enemy! It is like a Bunsen burner is constantly burning the flesh of both calf muscles, and my lumbar spine throbs along with it. As stated in my introduction a few days back now, I had early symptoms as a child, eg: Tippee-toeing for 18 months at 10 yrs old, inability to run to my full extent, and chronic fatigue. In 1992 something? triggered the syndrome and I developed numbness in the lower back-(actually on one particular spot), tingling limbs, aching feet and legs, episodes of spasms in the shoulders and calf muscles, and constant fatigue. Sorry to natter on, anyway I wonder if anyone can relate to the 'burning pain' I have, and any medications that help them. My neurosurgeon(s) are hesitant to operate, and I am hesitant to lose any functions due to the de-tethering procedure. I have a thickened filum terminale with fatty infiltration. Bladder studies show an amazing capacity to hold more liquid than thought humanly possible without wanting to burst! I also have minor bowel and bladder problems. A weird symptom is that my lying pulse rate is 40, sitting 75, and standing 125! My autonomic control system seems to have a mind of its own, and has really wild fluctuations at times. Advice anyone?? I really don't know what to do, and today with the gap of 4 hours off medications it really shocked me to realise the extent of the pain. You all seem to have horrible problems and I hate to burden anyone, but this nerve pain is absolutely shattering me! Thanks for being here Kind regards peterjwatson@... Quote Link to comment Share on other sites More sharing options...
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