Squirrellypete
01-16-2007, 11:32 PM
Hi all. I am happy to have found this place. I ran aross it over a year ago I guess just before it closed down because I couldn't find it again until now. Sorry if this is a long intro but I'm concerned about some recurring symptoms so soon after detethering:
My fiance (26 years old) had a myelomenincocele repair when he was an infant. The surgery was successful however he required a detethering operation at age 12 and another at age 15. The surgeries apparently relieved the worst of his symptoms but like many patients he was left with bladder/bowel dysfunction and partial desensitization in his buttock, legs and feet. Other than that he has led a normal and physically active life -- you'd never know anything was wrong with him to look at him. That is until a couple of years ago when he developed debilitating back pain out of the blue. We had an MRI done and went to see his child-hood neurosurgeon who told us there was nothing to worry about. After a year and a half of living with this pain and unable to do most any activity other than walking he developed a rapid onset of leg weakness, spasticity and leg pain. After doing some more research I concluded it was probably TCS and was horrified to learn I seemed to know more about the condition than his childhood neurosurgeon. I was also surprised to learn that the surgeon was unable to completely release it the last time around 10 years ago.
We found a neurosurgeon at Johns Hopkins who was experienced with adult TCS and opted for surgical detethering. The outcome sounded promising despite the risks. The surgery was successful as far as releasing the cord which I know is the most important part to stop progressive deterioration. Once he had recovered from the surgery itself his pain was virtually gone, his legs had regained much of their strength. Some leg pain remained but not nearly what he experienced prior to surgery. He's had a couple of CSF leaks which our surgeon said should heal on their own in time. He was correct and they seemed to resolve.
Now, approximately 2-3 months after surgery and his vast improvement, all of his symptoms he experienced prior to surgery have rapidly returned and are just as bad if not worse than before. My first thought was that it had retethered. We've been back for a couple of post-op visits and have been told there's nothing remarkable on the MRI to explain the recurrent symptoms (leg pain, back pain, leg weakness). There is a fluid pocket/pseudomeningocele but our surgeon doesn't think it's significant enough to cause the symptoms and believes that will go away on its own in time. He says the cord is not retethered and everything is where it's supposed to be. I want to be patient and not jump the gun if this is just an ongoing part of healing after a major spinal surgery but there appears to be no improvement going on. He's done nothing to reinjure it physically. It's now been 5 months since surgery. I asked the surgeon if perhaps there was just too much nerve damage done before the detethering but he said if that was the case we wouldn't have seen the immediate improvement we saw following surgery. Basically we got an "I Don't Know" and "Wait and see" which is a little disheartening.
I'm at a loss as to what to do now -- does anyone have any input or similar experience? Thanks for any help. Sincerely, Danielle
My fiance (26 years old) had a myelomenincocele repair when he was an infant. The surgery was successful however he required a detethering operation at age 12 and another at age 15. The surgeries apparently relieved the worst of his symptoms but like many patients he was left with bladder/bowel dysfunction and partial desensitization in his buttock, legs and feet. Other than that he has led a normal and physically active life -- you'd never know anything was wrong with him to look at him. That is until a couple of years ago when he developed debilitating back pain out of the blue. We had an MRI done and went to see his child-hood neurosurgeon who told us there was nothing to worry about. After a year and a half of living with this pain and unable to do most any activity other than walking he developed a rapid onset of leg weakness, spasticity and leg pain. After doing some more research I concluded it was probably TCS and was horrified to learn I seemed to know more about the condition than his childhood neurosurgeon. I was also surprised to learn that the surgeon was unable to completely release it the last time around 10 years ago.
We found a neurosurgeon at Johns Hopkins who was experienced with adult TCS and opted for surgical detethering. The outcome sounded promising despite the risks. The surgery was successful as far as releasing the cord which I know is the most important part to stop progressive deterioration. Once he had recovered from the surgery itself his pain was virtually gone, his legs had regained much of their strength. Some leg pain remained but not nearly what he experienced prior to surgery. He's had a couple of CSF leaks which our surgeon said should heal on their own in time. He was correct and they seemed to resolve.
Now, approximately 2-3 months after surgery and his vast improvement, all of his symptoms he experienced prior to surgery have rapidly returned and are just as bad if not worse than before. My first thought was that it had retethered. We've been back for a couple of post-op visits and have been told there's nothing remarkable on the MRI to explain the recurrent symptoms (leg pain, back pain, leg weakness). There is a fluid pocket/pseudomeningocele but our surgeon doesn't think it's significant enough to cause the symptoms and believes that will go away on its own in time. He says the cord is not retethered and everything is where it's supposed to be. I want to be patient and not jump the gun if this is just an ongoing part of healing after a major spinal surgery but there appears to be no improvement going on. He's done nothing to reinjure it physically. It's now been 5 months since surgery. I asked the surgeon if perhaps there was just too much nerve damage done before the detethering but he said if that was the case we wouldn't have seen the immediate improvement we saw following surgery. Basically we got an "I Don't Know" and "Wait and see" which is a little disheartening.
I'm at a loss as to what to do now -- does anyone have any input or similar experience? Thanks for any help. Sincerely, Danielle