I know this question is crazy, considering my husband Andrew is nearly 14 months post injury (you'd think I'd know the answer by now) . . . but, I do A LOT of reading and the definitions of complete and incomplete SCI injuries seem to be ambiguous at best. Here's my confusion:
Does COMPLETE mean severred or simply not being able to feel or function below level of injury?
If a person can perform ANY kind of function below level of injury, doesn't that make them INCOMPLETE or does that mean his level of injury has been diagnosed wrong and the level should be changed, but he is still COMPLETE?
Are all the "charts" the same (where the function is listed next to the vertibrae affected in injury) or are there conflicting "charts?"
Is the complete/incomplete diagnosis made purely on functional level or strictly by how the spine looks in an MRI or are both considered together in order to come to a diagnosis?
If complete is just that . . . "complete" then how is it that (so I read) Christopher Reeve's diagnosis changed from C2, Asia A, Complete to C2, Asia C, incomplete? If the diagnosis can change. . . what the hell does complete even mean?
This all stems from Andrew's diagnosis (C2, Asia A, Complete). This is what he CAN do: Breath 100% on his own (but no good cough), shrug his shoulders, bend his elbow out when his arm is lying on a flat surface in front of him (nothing against gravity), wiggle fingers (with great concentration), slightly push legs forward while laying down and feet on my thighs, wiggle toes when he can see them (with great concentration). He can feel particular areas (these areas don't change . . . it's always the same places) all the way down his arms and some on top of his hand, pressure in his toes when I squeeze them, and he can feel normal sensation down to about his nipple line.
I know I shouldn't concern myself so much with the diagnosis . . . but I have learned that as I am trying (very hard) to get him into some better rehab . . . this diagnosis is a major thing to those morons making decisions with his insurance. It's like the diagnosis of complete is just something they think is hopeless and not worthy of better rehab.
Any help in my confused (and always tired) state is much appreciated.
Joye
Full Version: Complete Vs. Incomplete
Quadriplegic & Paraplegic Spinal Cord Injuries > Disabled Living & Spinal Cord Injuries > Spinal Cord Injury Health Issues > Neurological Issues
Hi Joye, Sorry I cant help but thought I would just reassure you that you are not the only confused one. I dont know for sure about my son either. We are going for MRI and to see Neurosurgeon today so I will ask again.
As for the insurance morons.... his cronic meds request was turned down this week because their list names quadraplegic as a diagnosis but our doctor calls him a tetraplegic. Try explaining that to the call centre clown.
As for the insurance morons.... his cronic meds request was turned down this week because their list names quadraplegic as a diagnosis but our doctor calls him a tetraplegic. Try explaining that to the call centre clown.
most people do not have severed spinal cord maybe 80% to 90%.
complete means no feeling or motor function below injury
complete means no feeling or motor function below injury
Joye,
Detailed questions, and hopefully a helpful answer. Certainly a long one!
The definition as I know it is below. I would like to start by addressing your insurance company problems specifically, because that's the real issue here, isn't it? It sometimes feels like insurance companies are businesses that make their money by not paying out. They stick to complicated formulas for determining eligibility, with key words and phrases used to flag claims for payment or not for payment. That said, their policies always include the possibility to argue your case.
If the issue is that the insurance company will not pay out for extensive rehab because in their policy they only pay for the best rehab in the case of an incomplete injury, then they will stubbornly stick to that if all they get is a diagnosis. However, there are always ways to work the system. You need the doctor on your side, filling out the paperwork with you. He or she can't lie: a complete injury is a complete injury, so he or she can't pretend it's incomplete. However, he or she can strongly recommend or even insist on a course of treatment. Could you get the main doctor in charge of Andrew's case to fill out on the insurance forms that Andrew needs this and this type or rehab, and write up a letter detailing why?
One problem that comes up in insurance claims is doctors or indeed patients not going into detail. The claim forms say you can add pages with explanations and reasons, and doing so can make a difference.
Try to get the doctor to see that you and Andrew need to try extensive rehab, and try to get the doctor to support you clearly in writing.
Now, incomplete vs complete.
Does COMPLETE mean severed or simply not being able to feel or function below level of injury? It means not being able to feel and function below the level of injury at the time of diagnosis. See below for more on function.
Is the complete/incomplete diagnosis made purely on functional level or strictly by how the spine looks in an MRI or are both considered together in order to come to a diagnosis? During the process of diagnosis, as each department hands off to the next, they leave their "current diagnosis". To get a complete diagnosis, you need everyone on board. And, as Hikkakaru and Araitn point out in their posts below, it's the neurological assessment that makes for the complete/incomplete diagnosis, whereas the MRI and so on are used to visualize the damage and inform the overall diagnosis.
If the diagnosis can change. . . what the hell does complete even mean? The diagnosis can change because the doctors can reassess function, and because new scans can reveal new information, and because there can be some changes in the state. My exact diagnosis after both injuries changed over the first year.
I have also done a lot of reading on neurological injuries, both for my own sake and as part of a proofreading job I did a few years ago. If I understand the classification correctly, the difference is not between a total injury and a partial injury.
An incomplete injury is damage to part of the spinal cord resulting in a loss of movement and/or sensation to part of the body below the injury. This damage could be to the front part of the cord, to the centre of the cord, to the back of the cord, or to the left or right side of the cord, and I have read that the damage has to be to less than 60% of the cord for an injury to be considered incomplete. However, I have also read that it has to be to less than 50% and less than 70%. Unfortunately, neurology is one of the less exact of the fields of medicine.
Someone with an incomplete injury may still have a lot of feeling, or total feeling, but be unable to move, or may have a little feeling and a small range of movement, or may have a good range of movement, for example with some poor co-ordination. The position and the degree of injury determines what is retained, what is changed, and what is affected.
A complete injury is often classified as a complete severance of the spinal cord, but that's not actually an accurate description. In most layman's descriptions, it's a 100% injury, but I've read papers with damage to 75% of the cord listed as a complete injury (which yes, does beg the question how an injury between the percentages listed for incomplete and those listed for complete can be defined).
The real key difference is that a complete injury is a complete loss of function and sensation, and the word function is what needs definition. My neurologist describes function in terms of usefulness for a task: if you're talking about walking, then only being able to flex your toes is not function.
Think of a mug with a small crack near the rim. It's still a functioning mug, provided the coffee inside isn't above the level of the crack and you don't drink from the cracked part. A longer crack reduces function, and once the crack is below a certain point, the mug, even though it's not completely destroyed, can no longer be considered functioning.
Andrew has the ability to breathe unaided, and has extremely limited finger movements, and some reactional movement and sensation. Those are all signs that signals are getting through the injury in both directions, so the spinal cord is not 100% severed. However, there is not enough of an uninjured area, so it's all very limited. Therefore, he could be considered to have a complete loss of function, hence a complete injury. That doesn't mean he should just accept that as 100% gone, or that no rehab is necessary.
Medical diagnosis is not a precise field. We might find comfort in thinking it is, but essentially medical diagnosis is a best fit scenario depending on the doctors' abilities to define words. Complete = total loss of function and sensation. Define function, define total function, define total sensation.
I hope this has helped. I'd also ask everyone else to jump in and correct me if I've muddled anything. I am going on my own research and conversations with doctors, and on my own personal experience. Wishing you and Andrew the best of luck getting what you want out of the insurance company, and hoping for the best for you both.
Derek.
Detailed questions, and hopefully a helpful answer. Certainly a long one!
The definition as I know it is below. I would like to start by addressing your insurance company problems specifically, because that's the real issue here, isn't it? It sometimes feels like insurance companies are businesses that make their money by not paying out. They stick to complicated formulas for determining eligibility, with key words and phrases used to flag claims for payment or not for payment. That said, their policies always include the possibility to argue your case.
If the issue is that the insurance company will not pay out for extensive rehab because in their policy they only pay for the best rehab in the case of an incomplete injury, then they will stubbornly stick to that if all they get is a diagnosis. However, there are always ways to work the system. You need the doctor on your side, filling out the paperwork with you. He or she can't lie: a complete injury is a complete injury, so he or she can't pretend it's incomplete. However, he or she can strongly recommend or even insist on a course of treatment. Could you get the main doctor in charge of Andrew's case to fill out on the insurance forms that Andrew needs this and this type or rehab, and write up a letter detailing why?
One problem that comes up in insurance claims is doctors or indeed patients not going into detail. The claim forms say you can add pages with explanations and reasons, and doing so can make a difference.
Try to get the doctor to see that you and Andrew need to try extensive rehab, and try to get the doctor to support you clearly in writing.
Now, incomplete vs complete.
Does COMPLETE mean severed or simply not being able to feel or function below level of injury? It means not being able to feel and function below the level of injury at the time of diagnosis. See below for more on function.
Is the complete/incomplete diagnosis made purely on functional level or strictly by how the spine looks in an MRI or are both considered together in order to come to a diagnosis? During the process of diagnosis, as each department hands off to the next, they leave their "current diagnosis". To get a complete diagnosis, you need everyone on board. And, as Hikkakaru and Araitn point out in their posts below, it's the neurological assessment that makes for the complete/incomplete diagnosis, whereas the MRI and so on are used to visualize the damage and inform the overall diagnosis.
If the diagnosis can change. . . what the hell does complete even mean? The diagnosis can change because the doctors can reassess function, and because new scans can reveal new information, and because there can be some changes in the state. My exact diagnosis after both injuries changed over the first year.
I have also done a lot of reading on neurological injuries, both for my own sake and as part of a proofreading job I did a few years ago. If I understand the classification correctly, the difference is not between a total injury and a partial injury.
An incomplete injury is damage to part of the spinal cord resulting in a loss of movement and/or sensation to part of the body below the injury. This damage could be to the front part of the cord, to the centre of the cord, to the back of the cord, or to the left or right side of the cord, and I have read that the damage has to be to less than 60% of the cord for an injury to be considered incomplete. However, I have also read that it has to be to less than 50% and less than 70%. Unfortunately, neurology is one of the less exact of the fields of medicine.
Someone with an incomplete injury may still have a lot of feeling, or total feeling, but be unable to move, or may have a little feeling and a small range of movement, or may have a good range of movement, for example with some poor co-ordination. The position and the degree of injury determines what is retained, what is changed, and what is affected.
A complete injury is often classified as a complete severance of the spinal cord, but that's not actually an accurate description. In most layman's descriptions, it's a 100% injury, but I've read papers with damage to 75% of the cord listed as a complete injury (which yes, does beg the question how an injury between the percentages listed for incomplete and those listed for complete can be defined).
The real key difference is that a complete injury is a complete loss of function and sensation, and the word function is what needs definition. My neurologist describes function in terms of usefulness for a task: if you're talking about walking, then only being able to flex your toes is not function.
Think of a mug with a small crack near the rim. It's still a functioning mug, provided the coffee inside isn't above the level of the crack and you don't drink from the cracked part. A longer crack reduces function, and once the crack is below a certain point, the mug, even though it's not completely destroyed, can no longer be considered functioning.
Andrew has the ability to breathe unaided, and has extremely limited finger movements, and some reactional movement and sensation. Those are all signs that signals are getting through the injury in both directions, so the spinal cord is not 100% severed. However, there is not enough of an uninjured area, so it's all very limited. Therefore, he could be considered to have a complete loss of function, hence a complete injury. That doesn't mean he should just accept that as 100% gone, or that no rehab is necessary.
Medical diagnosis is not a precise field. We might find comfort in thinking it is, but essentially medical diagnosis is a best fit scenario depending on the doctors' abilities to define words. Complete = total loss of function and sensation. Define function, define total function, define total sensation.
I hope this has helped. I'd also ask everyone else to jump in and correct me if I've muddled anything. I am going on my own research and conversations with doctors, and on my own personal experience. Wishing you and Andrew the best of luck getting what you want out of the insurance company, and hoping for the best for you both.
Derek.
Christopher Reeves was a strange phenomenon. He regained function in his hand and parts of his foot 6 + years after his injury. You don't usually see return like that past 2 years.
As for the complete/incomplete diagnosis, Spinal Cord Injury specialists are stressing that imagery (ct/mri/etc) can NOT be used to assess whether or not a patient has a complete or incomplete injury. Only a set of ASIA tests 3 to 9 months post injury can be viewed as reliable in that field, and even then people see return statistically up to 2 years post.
As for the complete/incomplete diagnosis, Spinal Cord Injury specialists are stressing that imagery (ct/mri/etc) can NOT be used to assess whether or not a patient has a complete or incomplete injury. Only a set of ASIA tests 3 to 9 months post injury can be viewed as reliable in that field, and even then people see return statistically up to 2 years post.
The ASIA (American Spinal Injury Association) classification is the standard system adopted by almost all major organizations associated with spinal cord injuries.
According to the ASIA classification, the standard definitions of complete and incomplete are:
Complete: No motor function (voluntary sphincter contraction) or sensory function (by pin prick or light touch) in the S4-S5 segments (rectal/anal).
Incomplete: There is some sacral sparing at the S4-S5 segments. There is motor function (voluntary sphincter contraction) and/or sensory function (by pin prick or light touch) in the S4-S5 segments (rectal/anal).
The ASIA SCI classification worksheet can be viewed here .
Click here for a very descriptive interpretation of the spinal cord injury levels and classification by Dr. Wise Young.
If you really have a lot of free time on your hands, you can click here to read a five year discussion on Care Cure concerning the ASIA scale.
According to the ASIA classification, the standard definitions of complete and incomplete are:
Complete: No motor function (voluntary sphincter contraction) or sensory function (by pin prick or light touch) in the S4-S5 segments (rectal/anal).
Incomplete: There is some sacral sparing at the S4-S5 segments. There is motor function (voluntary sphincter contraction) and/or sensory function (by pin prick or light touch) in the S4-S5 segments (rectal/anal).
The ASIA SCI classification worksheet can be viewed here .
Click here for a very descriptive interpretation of the spinal cord injury levels and classification by Dr. Wise Young.
If you really have a lot of free time on your hands, you can click here to read a five year discussion on Care Cure concerning the ASIA scale.
QUOTE (araitn @ May 20 2009, 03:20 PM) 
Click here for a very descriptive interpretation of the spinal cord injury levels and classification by Dr. Wise Young.
That article is particularly interesting, especially how it talks about many doctors not precisely understanding the diagnoses and meanings of some things.
Unfortunately you will find that many even in the medical field do NOT know precisely how to "deal with" SCI. So I would stick with the specialists especially since your hubby's injury is higher up. And if you can get them to work "as a team" it would be beneficial for all concerned.
QUOTE (Travelling Blackbird @ May 20 2009, 03:13 AM)
Joye,
Detailed questions, and hopefully a helpful answer. Certainly a long one!
The definition as I know it is below. I would like to start by addressing your insurance company problems specifically, because that's the real issue here, isn't it? It sometimes feels like insurance companies are businesses that make their money by not paying out. They stick to complicated formulas for determining eligibility, with key words and phrases used to flag claims for payment or not for payment. That said, their policies always include the possibility to argue your case.
If the issue is that the insurance company will not pay out for extensive rehab because in their policy they only pay for the best rehab in the case of an incomplete injury, then they will stubbornly stick to that if all they get is a diagnosis. However, there are always ways to work the system. You need the doctor on your side, filling out the paperwork with you. He or she can't lie: a complete injury is a complete injury, so he or she can't pretend it's incomplete. However, he or she can strongly recommend or even insist on a course of treatment. Could you get the main doctor in charge of Andrew's case to fill out on the insurance forms that Andrew needs this and this type or rehab, and write up a letter detailing why?
One problem that comes up in insurance claims is doctors or indeed patients not going into detail. The claim forms say you can add pages with explanations and reasons, and doing so can make a difference.
Try to get the doctor to see that you and Andrew need to try extensive rehab, and try to get the doctor to support you clearly in writing.
Now, incomplete vs complete.
Does COMPLETE mean severed or simply not being able to feel or function below level of injury? It means not being able to feel and function below the level of injury at the time of diagnosis. See below for more on function.
Is the complete/incomplete diagnosis made purely on functional level or strictly by how the spine looks in an MRI or are both considered together in order to come to a diagnosis? During the process of diagnosis, as each department hands off to the next, they leave their "current diagnosis". To get a complete diagnosis, you need everyone on board. And, as Hikkakaru and Araitn point out in their posts below, it's the neurological assessment that makes for the complete/incomplete diagnosis, whereas the MRI and so on are used to visualize the damage and inform the overall diagnosis.
If the diagnosis can change. . . what the hell does complete even mean? The diagnosis can change because the doctors can reassess function, and because new scans can reveal new information, and because there can be some changes in the state. My exact diagnosis after both injuries changed over the first year.
I have also done a lot of reading on neurological injuries, both for my own sake and as part of a proofreading job I did a few years ago. If I understand the classification correctly, the difference is not between a total injury and a partial injury.
An incomplete injury is damage to part of the spinal cord resulting in a loss of movement and/or sensation to part of the body below the injury. This damage could be to the front part of the cord, to the centre of the cord, to the back of the cord, or to the left or right side of the cord, and I have read that the damage has to be to less than 60% of the cord for an injury to be considered incomplete. However, I have also read that it has to be to less than 50% and less than 70%. Unfortunately, neurology is one of the less exact of the fields of medicine.
Someone with an incomplete injury may still have a lot of feeling, or total feeling, but be unable to move, or may have a little feeling and a small range of movement, or may have a good range of movement, for example with some poor co-ordination. The position and the degree of injury determines what is retained, what is changed, and what is affected.
A complete injury is often classified as a complete severance of the spinal cord, but that's not actually an accurate description. In most layman's descriptions, it's a 100% injury, but I've read papers with damage to 75% of the cord listed as a complete injury (which yes, does beg the question how an injury between the percentages listed for incomplete and those listed for complete can be defined).
The real key difference is that a complete injury is a complete loss of function and sensation, and the word function is what needs definition. My neurologist describes function in terms of usefulness for a task: if you're talking about walking, then only being able to flex your toes is not function.
Think of a mug with a small crack near the rim. It's still a functioning mug, provided the coffee inside isn't above the level of the crack and you don't drink from the cracked part. A longer crack reduces function, and once the crack is below a certain point, the mug, even though it's not completely destroyed, can no longer be considered functioning.
Andrew has the ability to breathe unaided, and has extremely limited finger movements, and some reactional movement and sensation. Those are all signs that signals are getting through the injury in both directions, so the spinal cord is not 100% severed. However, there is not enough of an uninjured area, so it's all very limited. Therefore, he could be considered to have a complete loss of function, hence a complete injury. That doesn't mean he should just accept that as 100% gone, or that no rehab is necessary.
Medical diagnosis is not a precise field. We might find comfort in thinking it is, but essentially medical diagnosis is a best fit scenario depending on the doctors' abilities to define words. Complete = total loss of function and sensation. Define function, define total function, define total sensation.
I hope this has helped. I'd also ask everyone else to jump in and correct me if I've muddled anything. I am going on my own research and conversations with doctors, and on my own personal experience. Wishing you and Andrew the best of luck getting what you want out of the insurance company, and hoping for the best for you both.
Derek.
Detailed questions, and hopefully a helpful answer. Certainly a long one!
The definition as I know it is below. I would like to start by addressing your insurance company problems specifically, because that's the real issue here, isn't it? It sometimes feels like insurance companies are businesses that make their money by not paying out. They stick to complicated formulas for determining eligibility, with key words and phrases used to flag claims for payment or not for payment. That said, their policies always include the possibility to argue your case.
If the issue is that the insurance company will not pay out for extensive rehab because in their policy they only pay for the best rehab in the case of an incomplete injury, then they will stubbornly stick to that if all they get is a diagnosis. However, there are always ways to work the system. You need the doctor on your side, filling out the paperwork with you. He or she can't lie: a complete injury is a complete injury, so he or she can't pretend it's incomplete. However, he or she can strongly recommend or even insist on a course of treatment. Could you get the main doctor in charge of Andrew's case to fill out on the insurance forms that Andrew needs this and this type or rehab, and write up a letter detailing why?
One problem that comes up in insurance claims is doctors or indeed patients not going into detail. The claim forms say you can add pages with explanations and reasons, and doing so can make a difference.
Try to get the doctor to see that you and Andrew need to try extensive rehab, and try to get the doctor to support you clearly in writing.
Now, incomplete vs complete.
Does COMPLETE mean severed or simply not being able to feel or function below level of injury? It means not being able to feel and function below the level of injury at the time of diagnosis. See below for more on function.
Is the complete/incomplete diagnosis made purely on functional level or strictly by how the spine looks in an MRI or are both considered together in order to come to a diagnosis? During the process of diagnosis, as each department hands off to the next, they leave their "current diagnosis". To get a complete diagnosis, you need everyone on board. And, as Hikkakaru and Araitn point out in their posts below, it's the neurological assessment that makes for the complete/incomplete diagnosis, whereas the MRI and so on are used to visualize the damage and inform the overall diagnosis.
If the diagnosis can change. . . what the hell does complete even mean? The diagnosis can change because the doctors can reassess function, and because new scans can reveal new information, and because there can be some changes in the state. My exact diagnosis after both injuries changed over the first year.
I have also done a lot of reading on neurological injuries, both for my own sake and as part of a proofreading job I did a few years ago. If I understand the classification correctly, the difference is not between a total injury and a partial injury.
An incomplete injury is damage to part of the spinal cord resulting in a loss of movement and/or sensation to part of the body below the injury. This damage could be to the front part of the cord, to the centre of the cord, to the back of the cord, or to the left or right side of the cord, and I have read that the damage has to be to less than 60% of the cord for an injury to be considered incomplete. However, I have also read that it has to be to less than 50% and less than 70%. Unfortunately, neurology is one of the less exact of the fields of medicine.
Someone with an incomplete injury may still have a lot of feeling, or total feeling, but be unable to move, or may have a little feeling and a small range of movement, or may have a good range of movement, for example with some poor co-ordination. The position and the degree of injury determines what is retained, what is changed, and what is affected.
A complete injury is often classified as a complete severance of the spinal cord, but that's not actually an accurate description. In most layman's descriptions, it's a 100% injury, but I've read papers with damage to 75% of the cord listed as a complete injury (which yes, does beg the question how an injury between the percentages listed for incomplete and those listed for complete can be defined).
The real key difference is that a complete injury is a complete loss of function and sensation, and the word function is what needs definition. My neurologist describes function in terms of usefulness for a task: if you're talking about walking, then only being able to flex your toes is not function.
Think of a mug with a small crack near the rim. It's still a functioning mug, provided the coffee inside isn't above the level of the crack and you don't drink from the cracked part. A longer crack reduces function, and once the crack is below a certain point, the mug, even though it's not completely destroyed, can no longer be considered functioning.
Andrew has the ability to breathe unaided, and has extremely limited finger movements, and some reactional movement and sensation. Those are all signs that signals are getting through the injury in both directions, so the spinal cord is not 100% severed. However, there is not enough of an uninjured area, so it's all very limited. Therefore, he could be considered to have a complete loss of function, hence a complete injury. That doesn't mean he should just accept that as 100% gone, or that no rehab is necessary.
Medical diagnosis is not a precise field. We might find comfort in thinking it is, but essentially medical diagnosis is a best fit scenario depending on the doctors' abilities to define words. Complete = total loss of function and sensation. Define function, define total function, define total sensation.
I hope this has helped. I'd also ask everyone else to jump in and correct me if I've muddled anything. I am going on my own research and conversations with doctors, and on my own personal experience. Wishing you and Andrew the best of luck getting what you want out of the insurance company, and hoping for the best for you both.
Derek.
What the neuro surgeon told us the one who did the surgery on our daughter's neck c5 c6 said she would probably never have any use of her arms or limited. I would like to see his face when she rolls in her manual chair and runs over his toes. She also has some use of wrist flexion and some gripping with one hand. What my question is to you is, "why did that neuro surgeon tell me that there was no blood in the spinal area that had been crushed c4" Some more information: c4 was replaced with a titanium vertebrae with some type of wire to help the bone grow over the damaged area after he removed all the broken c4 bone and using the larger parts to repair c5 and rods inserted on both sides of the verte. to stabilize neck? Diving accident in her pool. She also has good feeling below level of injury in her feet/legs/toes/butt/stomach/chest.
Hi Joyce
As with your daughter, my son was told he would never really be able to do anything, probably not even breathe unaided. Yesterday he pushed his manual chair into the neurosurgeons office. He has good arm and wrists but no grip yet. He also has sensation down to his waist and a little in his feet. Doc was very pleased with yesterdays MRI which shows no deteriation of the spine below the injury.
Here the drs seem less inclined to label their SCIs, we have never been given a complete/ incomplete tag or any sort of ASIA test. Maybe they realise that noone really knows how far any particular case can go and that when he was surprised like yesterday, he did the human thing.... smiled, shook his head and said Im amazed. A much more encouraging response than just been assigned a number off a chart!
V
As with your daughter, my son was told he would never really be able to do anything, probably not even breathe unaided. Yesterday he pushed his manual chair into the neurosurgeons office. He has good arm and wrists but no grip yet. He also has sensation down to his waist and a little in his feet. Doc was very pleased with yesterdays MRI which shows no deteriation of the spine below the injury.
Here the drs seem less inclined to label their SCIs, we have never been given a complete/ incomplete tag or any sort of ASIA test. Maybe they realise that noone really knows how far any particular case can go and that when he was surprised like yesterday, he did the human thing.... smiled, shook his head and said Im amazed. A much more encouraging response than just been assigned a number off a chart!
V
QUOTE (sam4012 @ May 20 2009, 10:42 PM)
What the neuro surgeon told us the one who did the surgery on our daughter's neck c5 c6 said she would probably never have any use of her arms or limited. I would like to see his face when she rolls in her manual chair and runs over his toes. She also has some use of wrist flexion and some gripping with one hand.
It's great to hear that she has that movement, and is able to use her arms and hands. Did she do a lot of rehab? Did you work with her? She must be a pretty determined kid.
QUOTE (sam4012 @ May 20 2009, 10:42 PM)
What my question is to you is, "why did that neuro surgeon tell me that there was no blood in the spinal area that had been crushed c4" Some more information: c4 was replaced with a titanium vertebrae with some type of wire to help the bone grow over the damaged area after he removed all the broken c4 bone and using the larger parts to repair c5 and rods inserted on both sides of the verte. to stabilize neck? Diving accident in her pool. She also has good feeling below level of injury in her feet/legs/toes/butt/stomach/chest.
Even with the extra information, I don't think anyone here could hazard a guess at why the doctor said that about the blood flow. That's the kind of information I wouldn't even have been able to take on board during my own experiences: it just wouldn't have stuck with me. I also haven't read much about blood flow in the organism post injury, well, except for in head injuries.
As for telling you that she'd never regain movement... honestly, I don't understand why doctors make these statements. Time and again, I've come across this: a doctor makes a definitive statements that a certain movement will not be recovered, only to be proven wrong. In some of these cases, maybe the doctor said "There's only a tiny chance so I don't want to get your hopes up" but the patient heard "There's no chance"... in some, I do unfortunately think it's doctors diagnosing out of their field of expertise, or being afraid of getting sued.
If you have a doctor who reads charts, then refers to classic literature cases to give his diagnosis, then the equation goes "crushed C4 with ?no blood supply?" = "no recovery of arm movement" with the result: give the diagnosis and move on. If you have a doctor who's seen a lot of cases and has a lot of experience with the subtle differences between two people with superficially similar injuries, then I think you've more of a chance of a detailed answer.
How's Sam doing these days?
QUOTE (sweeper @ May 21 2009, 08:45 AM)
Here the drs seem less inclined to label their SCIs, we have never been given a complete/ incomplete tag or any sort of ASIA test. Maybe they realise that noone really knows how far any particular case can go and that when he was surprised like yesterday, he did the human thing.... smiled, shook his head and said Im amazed. A much more encouraging response than just been assigned a number off a chart!
V
V
There are differences in treatment and experience in different countries. I felt much better with the treatment I was getting in Poland than I had with the treatment I was getting in Ireland. I felt that in Poland, they had more experience, and treated me as an individual case, not as a production line case. Yes, there's this injury here, and that usually means that you can't do this, but let's try and see what happens.
In Ireland, it was much more "it's this, there's your result, those are your chances, goodbye".
How's your son doing these days?
QUOTE (wheeliebear75 @ May 20 2009, 10:29 PM)
Unfortunately you will find that many even in the medical field do NOT know precisely how to "deal with" SCI. So I would stick with the specialists especially since your hubby's injury is higher up. And if you can get them to work "as a team" it would be beneficial for all concerned.
Good advice, Joye. Maybe getting more than one of the team helping with the claim forms would speed things up.
Thank you all for your responses . . . I appreciate the information and the guidance. I had a "talk" with Andrew's Nurse Case Manager with his insurance company today and although a bit heated . . . I feel she is seeing things a little more my way now.
Andrew's doctor has been completely on board since the beginning and has sent a letter of necessity along with his prescription for the intensive rehab. Nurse Case Manager informed me today that she "for some reason" did not receive that letter. I think that's in the insurance handbook, right . . . "lose first letter and they may go away." Well, they don't know me . . . I told that lady today that if this didn't go through I was going to become her new best friend and we'd be talking daily.
She now has a new reason, however, for not wanting to negotiate a contract with this rehab place . . . she infored me that Andrew's injury is too old for intensive rehab (he's 14 months post injury). I was inflamed by that piont . . . everything I read says 2 years and now I'm beginning to finally find medical articles that are saying beyond 2 years.
I also sent a letter to Senator McCain . . . we'll see what happens.
Thanks again,
Joye
Andrew's doctor has been completely on board since the beginning and has sent a letter of necessity along with his prescription for the intensive rehab. Nurse Case Manager informed me today that she "for some reason" did not receive that letter. I think that's in the insurance handbook, right . . . "lose first letter and they may go away." Well, they don't know me . . . I told that lady today that if this didn't go through I was going to become her new best friend and we'd be talking daily.
She now has a new reason, however, for not wanting to negotiate a contract with this rehab place . . . she infored me that Andrew's injury is too old for intensive rehab (he's 14 months post injury). I was inflamed by that piont . . . everything I read says 2 years and now I'm beginning to finally find medical articles that are saying beyond 2 years.
I also sent a letter to Senator McCain . . . we'll see what happens.
Thanks again,
Joye
I also have a question about complete and incomplete. My boyfriends injury is T12. They have not yet stated if he is complete or incomplete, however they did some pin prick tests in his butt area, and the doctor stated that if he doesnt get feeling back there he is considered "complete". However, my boyfriend has feeling right down to his knee. There has been no muscle movement though, but he can feel up to his knee.
They can still consider him a complete even if he has feeling below the level of injury?
as per the definition
Complete: No motor function (voluntary sphincter contraction) or sensory function (by pin prick or light touch) in the S4-S5 segments (rectal/anal).
They can still consider him a complete even if he has feeling below the level of injury?
as per the definition
Complete: No motor function (voluntary sphincter contraction) or sensory function (by pin prick or light touch) in the S4-S5 segments (rectal/anal).
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