Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Livvie, Didn't u mention a fluid filled cyst before? That can b a syrinx, which can cause rapid decline & out of control pain & spasms. I went from walking unaided & managed pain to marginal ability to walk even with AFOs & forearm crutches & uncontrolled pain in 2 months. Arachnoiditis could also contribute to these symptoms. If they say they can't find anything on the scan, it may b exploratory surgery. My second was. And he found retethering & more scar tissue & arachnoiditis than he could imagine. Sent from my iPhone 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 26, 2011 Report Share Posted January 26, 2011 She has also been complaining of pain in the tail bone area. She has SB Occulta, so there is no cushion in that area. Any ideas on that one? 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 26, 2011 Report Share Posted January 26, 2011 Was there anything that precipitated the decline - a fall, stumble, a bend-over where she remembers feeling something? I've read about extreme rapid onset of decline so surprised that Duke isn't seeing it as that, but maybe if there isn't an " event " that set it off they're hesitant to say it's definitely the tether? Kathy 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...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Kathy, She has a pretty nasty fall back in October. She was bruised but ok. About a month later she ended up with Cellulitis in her left arm, Dr said not related, but it just seems odd to me that it was in the same area where the bruise from the fall was. Really her pain has not been controlled for two years. The only time she has had pain control she has been on huge doses of narcotics and slept alot. There was no quality of life, and we decided she needed to try something else. The Dr. initially thought the decline was related to inactivity from pain. But, I just don't think so. Back in the fall she was fairly active even with the pain. Then she got to where she couldn't walk without her walker, been downhill since. Subject: Re: Rapid Decline To: tetheredspinalcord Date: Wednesday, January 26, 2011, 5:23 PM  Was there anything that precipitated the decline - a fall, stumble, a bend-over where she remembers feeling something? I've read about extreme rapid onset of decline so surprised that Duke isn't seeing it as that, but maybe if there isn't an " event " that set it off they're hesitant to say it's definitely the tether? Kathy 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...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 I went downhill (pain and neuro - but not to the point where I couldn't walk) after a car accident. That's why I was wondering - and even this time, with the decline I'm experiencing, every specialist I see, the first thing they ask is if I can remember anything that precipitated this decline. I fell just before decline became rapid, but I was also in a decline status before the fall ... Please keep us updated, especially about the cyst. I'm in NC - about an hour or so west of Duke - but if you need anything, let me know. Kathy 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...
Guest guest Posted January 26, 2011 Report Share Posted January 26, 2011 Thanks Kathy! I will keep you guys posted. Subject: Re: Rapid Decline To: tetheredspinalcord Date: Wednesday, January 26, 2011, 5:23 PM Was there anything that precipitated the decline - a fall, stumble, a bend-over where she remembers feeling something? I've read about extreme rapid onset of decline so surprised that Duke isn't seeing it as that, but maybe if there isn't an " event " that set it off they're hesitant to say it's definitely the tether? Kathy 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...
Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 I agree, they may just have to go in and see whats going on. What meds is she on? 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 I had rapid decline like that after a chiro adjustment. Subject: Re: Rapid Decline To: tetheredspinalcord Date: Wednesday, January 26, 2011, 4:23 PM Â Was there anything that precipitated the decline - a fall, stumble, a bend-over where she remembers feeling something? I've read about extreme rapid onset of decline so surprised that Duke isn't seeing it as that, but maybe if there isn't an " event " that set it off they're hesitant to say it's definitely the tether? Kathy 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...
Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 Kathy, Dr. came in and wants to get a handle on the pain before we go any further. Her pain has not been controlled very well in a long time and for the past 6 months not at all. Therefore, she was very inactive. I am wondering that since the majority of the decline took place in rehab, was it the aggressive PT. Being up, not necessarily on her feet, but just doing things even in bed like working with therabands is more than she has done in several months. The most activity I have been able to get out of her was walking to the bathroom and to the kitchen, then she would go right back to bed. Maybe she did damage something when she fell in October, and her being forced to be a little more active sped things up. I did ask about the " fluid pocket " , he said that it was not really a fluid pocket but a gray area around the bottom that looked like possibly where she had started to leak but it had sealed itself. He is concerned about the headaches and the possiblity of a leak now, but the MRI shows no changes. Doesn't mean there are not some changes in the area that always look abnormal anyway. I guess we just continue to sit, and wait! Livvie Subject: Re: Rapid Decline To: tetheredspinalcord Date: Wednesday, January 26, 2011, 4:23 PM  Was there anything that precipitated the decline - a fall, stumble, a bend-over where she remembers feeling something? I've read about extreme rapid onset of decline so surprised that Duke isn't seeing it as that, but maybe if there isn't an " event " that set it off they're hesitant to say it's definitely the tether? Kathy 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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