Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 I would definitely be concerned. If not just about a retether, but potentially the development of another condition (such as arachnoiditis or syringomyelia) which can also cause rapid decline neurologically. A few months after my second surgery, I had a very rapid neurological decline. I went from walking normally to using bilateral AFOs and forearm crutches and still very unstable. The MRI revealed that I had developed hydrosyringomyelia (basically the flow of CSF is blocked an forms a cyst of CSF that puts pressure on the cord, thereby causing the decline). But, I would say that it is definitely an ominous sign that should not be ignored. Jenn > > > Background - My daughter is almost 4 and has been de-tethered twice. > She has LMC. Left leg she has no feeling below the knee and wears a KAFO > brace. Right leg she is losing function since January 2009. February 2009 > she was put in a hinged AFO. The foot is curving more and the Ortho wants to > try this stimulation thing to see if it helps. > > So two weeks ago we had our first session of this electro stimulation thing > to le's right leg. She felt it, session went great. > > Last week we were all sick and I cancelled the appointment. > > Fast forward to this afternoon. The PT had problems with the first machine > she used. So then she decided to try another one. She kept increasing the > voltage and le didn't even move. Thinking something was wrong with > the machine she hooked it up to herself, it worked fine. The she put the > electrodes on my arm, I felt it. > > So needless to say it looks like she has loss of sensation to a degree on > this leg that has happened within the last two weeks. > > Something to be alarmed about? The PT was going to leave a message for the > NS and the Ortho (this is all at a Children's hospital). I plan on calling > both the NS and the Ortho tomorrow myself. > > Suggestions? Thoughts? > > Anne > Mama to Conner, le and Delaney > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2010 Report Share Posted January 14, 2010 Jenn, Wow, those are some things I didn't even know to be worried about. She is having a Urodynamics next Thursday and an appointment with the Urologist. After the test and Uro visit we are to go to the Neuro's. He wants to see the Urodynamics results and take a look at her. Then we will go from there. Which I am thinking will be an MRI. Her Physical Therapist with the Special School District said she would take a look at her today. She hasn't seen her since before Christmas because of break and snow day. Thank you, I will let you know what happens. Weird thing is the bladder (as far as I can tell) is the same. Bowel, we seem to be getting less out with the enema, but no leakage or anything like that. Anne Re: Loss of Sensation I would definitely be concerned. If not just about a retether, but potentially the development of another condition (such as arachnoiditis or syringomyelia) which can also cause rapid decline neurologically. A few months after my second surgery, I had a very rapid neurological decline. I went from walking normally to using bilateral AFOs and forearm crutches and still very unstable. The MRI revealed that I had developed hydrosyringomyelia (basically the flow of CSF is blocked an forms a cyst of CSF that puts pressure on the cord, thereby causing the decline). But, I would say that it is definitely an ominous sign that should not be ignored. Jenn > > > Background - My daughter is almost 4 and has been de-tethered twice. > She has LMC. Left leg she has no feeling below the knee and wears a KAFO > brace. Right leg she is losing function since January 2009. February 2009 > she was put in a hinged AFO. The foot is curving more and the Ortho wants to > try this stimulation thing to see if it helps. > > So two weeks ago we had our first session of this electro stimulation thing > to le's right leg. She felt it, session went great. > > Last week we were all sick and I cancelled the appointment. > > Fast forward to this afternoon. The PT had problems with the first machine > she used. So then she decided to try another one. She kept increasing the > voltage and le didn't even move. Thinking something was wrong with > the machine she hooked it up to herself, it worked fine. The she put the > electrodes on my arm, I felt it. > > So needless to say it looks like she has loss of sensation to a degree on > this leg that has happened within the last two weeks. > > Something to be alarmed about? The PT was going to leave a message for the > NS and the Ortho (this is all at a Children's hospital). I plan on calling > both the NS and the Ortho tomorrow myself. > > Suggestions? Thoughts? > > Anne > Mama to Conner, le and Delaney > > > Quote Link to comment Share on other sites More sharing options...
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