Hoosier Mama?
10-06-2006, 12:33 PM
Let me apologize in advance for the length of my post, but I need to give an adequate background in order to get the best feedback. I'll try to keep it as concise as I can.
Born with spina-bifida and scoliosis, I was lucky in that it didn't really effect my life...I could run (three miles a day!), carry kids on my shoulders, worked in a furniture factory for many years. When I was 10, I had hardware put in, with no adverse effects.
When I was 30, and still asymptomatic, I thought I'd better go in for a check up...just maintenance, no specific complaints to speak of. They told me I had tethered cord syndrome (never heard the term until then), and was surprised that I wasn't told this from an early age. They said it required surgical intervention or else I would eventually lose the function in my legs. Back then, I trusted doctors explicitly, and never questioned their expertise...so I agreed to the surgery. They brought in an ortho surgeon, who felt that the hardware should also be removed.
From that point on my life changed in the following ways: I had to quit working and go on Disability, I had to start self-cathing, and use a single-point cane to ambulate.
Fast forward to '03...I was then 45...I find that my cord has re-tethered (once an untethering is performed, it's a given that it will eventually re-tether, due to the formation of additional scar tissue)....this time I do have serious symptoms and was losing leg and bladder/bowel function (I now know that this should be the main determining factor in a decision to treat tethered cord with surgery).
This surgery lasted 12 hrs., then five days later, another 12 hr. surgery to replace hardware. I am now an incomplete para, resulting from a suspected spinal cord stroke shortly after surgery. The reason the first surgery took so long, is because when they got in there, what they saw under microscope was "daunting"....thousands of tiny shards of bone were free-floating in my spinal fluid, acting like little scissors on my cord everytime I moved. My NS said he was astounded that I wasn't already paralyzed in both legs by this time. So they began the tedious process of picking out each fragment via microscope...NS said it was like "eating an elephant...you just have to take one bite at a time".
I asked the good doc if this could be caused from bone degeneration...he said 'no'...I asked if this could be resulting from a shoddy surgery in '87...he said, 'that's a good question...and one I'd want to find out if I were you'. (you know how these doctors are...they merely hint at stuff like this. Professional loyalty, and all that.)
Then I discover (when reading through my medical reports 17 yrs. later) that when they removed the original hardware in '87, they reported that I had a failed fusion. Knowing this, they did not re-fuse or replace my hardware with anything (and my scoliosis is considered to be severe, so I should've had something put in for support). Without support, my scoliosis progressed, placing further stresses on my already tethered cord, stretching it to the size of a chopstick.:eek:
The surgery in '87 set in motion a domino effect of problems that continue to this day, and will most likely eventually result in total paralysis, as I'm slated to have yet another de-tethering...it just goes on and on. :rolleyes:
Okay, so now for my main question....ta-dah!:rolleyes: (thanks for sticking with me so far!:) ) Does this sound like medical negligence to anyone? And if so, I know the statute of limitations has run out, yet the 'point of discovery' was only three years ago. There are a lot of other ramifications from that surgery in '87 that I won't bore you with, but suffice it to say...they all suck!
I'd appreciate any info, thoughts, brainstorming you can offer up. Thank You All!
Born with spina-bifida and scoliosis, I was lucky in that it didn't really effect my life...I could run (three miles a day!), carry kids on my shoulders, worked in a furniture factory for many years. When I was 10, I had hardware put in, with no adverse effects.
When I was 30, and still asymptomatic, I thought I'd better go in for a check up...just maintenance, no specific complaints to speak of. They told me I had tethered cord syndrome (never heard the term until then), and was surprised that I wasn't told this from an early age. They said it required surgical intervention or else I would eventually lose the function in my legs. Back then, I trusted doctors explicitly, and never questioned their expertise...so I agreed to the surgery. They brought in an ortho surgeon, who felt that the hardware should also be removed.
From that point on my life changed in the following ways: I had to quit working and go on Disability, I had to start self-cathing, and use a single-point cane to ambulate.
Fast forward to '03...I was then 45...I find that my cord has re-tethered (once an untethering is performed, it's a given that it will eventually re-tether, due to the formation of additional scar tissue)....this time I do have serious symptoms and was losing leg and bladder/bowel function (I now know that this should be the main determining factor in a decision to treat tethered cord with surgery).
This surgery lasted 12 hrs., then five days later, another 12 hr. surgery to replace hardware. I am now an incomplete para, resulting from a suspected spinal cord stroke shortly after surgery. The reason the first surgery took so long, is because when they got in there, what they saw under microscope was "daunting"....thousands of tiny shards of bone were free-floating in my spinal fluid, acting like little scissors on my cord everytime I moved. My NS said he was astounded that I wasn't already paralyzed in both legs by this time. So they began the tedious process of picking out each fragment via microscope...NS said it was like "eating an elephant...you just have to take one bite at a time".
I asked the good doc if this could be caused from bone degeneration...he said 'no'...I asked if this could be resulting from a shoddy surgery in '87...he said, 'that's a good question...and one I'd want to find out if I were you'. (you know how these doctors are...they merely hint at stuff like this. Professional loyalty, and all that.)
Then I discover (when reading through my medical reports 17 yrs. later) that when they removed the original hardware in '87, they reported that I had a failed fusion. Knowing this, they did not re-fuse or replace my hardware with anything (and my scoliosis is considered to be severe, so I should've had something put in for support). Without support, my scoliosis progressed, placing further stresses on my already tethered cord, stretching it to the size of a chopstick.:eek:
The surgery in '87 set in motion a domino effect of problems that continue to this day, and will most likely eventually result in total paralysis, as I'm slated to have yet another de-tethering...it just goes on and on. :rolleyes:
Okay, so now for my main question....ta-dah!:rolleyes: (thanks for sticking with me so far!:) ) Does this sound like medical negligence to anyone? And if so, I know the statute of limitations has run out, yet the 'point of discovery' was only three years ago. There are a lot of other ramifications from that surgery in '87 that I won't bore you with, but suffice it to say...they all suck!
I'd appreciate any info, thoughts, brainstorming you can offer up. Thank You All!