Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 Not at all. Sent from my iPhone , Do you mind if I email you offlist? You may or may not know that my daughter Beth was a Duke with increased weakness in both legs and unmanaged pain. Duke got her on a pain regimen and transported her to rehab to try and increase strength in the legs. While at Duke she was walking about 80 ft, take a few steps, sit, take a few steps, sit, you know. When she got the rehab she could not take more than 3 or 4 steps and began having headaches when she would get up or move any. That was last week on Thursday and Friday, by Saturday she could not hold her own weight, they had to have one person at each side of the gait belt to keep her up, and her pain was uncontrolled again. We are now back at Duke and the Dr.'s are saying they are going to try to get to bottom of things, that tethered cord is usually more of a gradual decline. To me her being able to walk unaided in Sept, Oct and then in Nov graduating to a cane, and down hill since is pretty quick. Rehab did a ssecond MRI yesterday to compare with what had been done two weeks ago. No changes! Anybody have experiences with a rapid decline? We are very frustrated and just want some answers. Livvie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 Hi Livvie, Unfortunately I don't have any answers either, and I am frustrated as well. But when I read your post, it really tugged at my heart strings. I don't consider myself a very religious person, and in fact, I often find myself frustrated with God and wanting answers from him too! However, something about a child suffering seems to elicit prayer, and hope, for a better outcome. I am so sorry for what you and your daughter are enduring, and I hope so much you get the answers you seek and find peace. Good luck, Holly ________________________________ To: " tetheredspinalcord " <tetheredspinalcord > Sent: Wed, January 26, 2011 3:41:22 PM Subject: Rapid Decline You may or may not know that my daughter Beth was a Duke with increased weakness in both legs and unmanaged pain. Duke got her on a pain regimen and transported her to rehab to try and increase strength in the legs. While at Duke she was walking about 80 ft, take a few steps, sit, take a few steps, sit, you know. When she got the rehab she could not take more than 3 or 4 steps and began having headaches when she would get up or move any. That was last week on Thursday and Friday, by Saturday she could not hold her own weight, they had to have one person at each side of the gait belt to keep her up, and her pain was uncontrolled again. We are now back at Duke and the Dr.'s are saying they are going to try to get to bottom of things, that tethered cord is usually more of a gradual decline. To me her being able to walk unaided in Sept, Oct and then in Nov graduating to a cane, and down hill since is pretty quick. Rehab did a ssecond MRI yesterday to compare with what had been done two weeks ago. No changes! Anybody have experiences with a rapid decline? We are very frustrated and just want some answers. Livvie Quote Link to comment Share on other sites More sharing options...
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