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Thread: How much longer?

  1. #61
    Quote Originally Posted by Keith
    My general practitioner tells me to forget about it. Don't know what to believe.
    I am sympathetic to you Keith, in this day and age, this lifestyle is unacceptable for human standards. In regards to your GP's "wonderful" advice, have you asked him what he is basing his assertion on. I would request him to provide you proof as to why you should "forget about it". I can bet he is still in the school of thought that the spinal cord refuses to regenerate.
    No one ever became unsuccessful by helping others out

  2. #62
    Quote Originally Posted by Dann21
    I'm a complete injury. Do you know what the percentages are of complete spinal cord injuries are able to recover walking versus now and then?

    A person with a "complete" injury is much less likely to recover independent locomotion than somebody with an "incomplete" injury. In the original 1979 study, they found that 9% of the people recovered walking but these were in people who had brain injury. While this may seem paradoxical, brain injuries often make the spinal cord injury seem worse and the brain injury recovers. So, people who are ASIA A with brain injury often recover walking.

    Our clinical trial with methylprednisolone did not examine walking as one of the outcome measures. However, I did an informal survey of "complete" spinal cord injury patients that we treated with methylprednisolone at Bellevue Hospital and found that 17% of them walked out of the hospital. In my experience, the likelihood of locomotor recovery is lower in people with thoracic spinal cord injury than cervical spinal cord injury.

    The likelihood of spontaneous recovery decreases with time after injury. For example, if you have not recovered locomotor ability by one year, the likelihood that you will recover the 2nd and 3rd year is relatively low. Spontaneous sensory recovery and isolated motor control may occur late as 3 years years after injury. Christopher Reeve, for example, got back sensory function at 2-3 years and index finger movement at 5-6 years after injury.


  3. #63
    Senior Member
    Join Date
    Mar 2007
    Dr. Young,
    Why is the likelihood of locomotor recovery lower in T level injuries than in C level injuries? I have other questions but will post later as to not totally hijack this thread.

  4. #64
    Quote Originally Posted by Keith
    My general practitioner tells me to forget about it.
    This is why we need to do our own research and come to our own conclusions.

  5. #65
    Quote Originally Posted by momo3
    Dr. Young,
    Why is the likelihood of locomotor recovery lower in T level injuries than in C level injuries? I have other questions but will post later as to not totally hijack this thread.
    same Q here Doc...

  6. #66
    Senior Member spidergirl's Avatar
    Join Date
    Nov 2005
    Hollywood, CA
    10 years minimum and that might just be for acutes. There's too many scientists making promises for their own glory and not only is it fraud but hurts the community even more. Geron I believe is in it for the money and not the passion to cure people and I could be wrong but their false promises are no different than boys crying wolf.

    However, I respect the scientists that are actually in the lab as we speak trying to figure this hellish situation out. I feel very sorry for the people that get "sucked up" into believing things that are not true. I will be almost 2 years soon and I have figured this all out already in this short amount of time.

    Also I don't believe that anyone has made a chronic ASIA A rodent wobble.

    I also believe that awareness through media and publicity channels are better than donating money. The money they need is too much and not likely for any of us to go to raise it. I am not saying not to donate because of course if feels good to do so but not only A. Do you NOT actually know where your money is going and B. it's clearly not enough. Example.....If I got 50 million for a scientist what would that do..... unless you 100% can make people walk through translational research!!Besides, 50 million is a clinical trial for 3 people in the US. We are playing with politics here not money. I hope the major breakthrough comes from another country so the people of the USA can see how much our country really can care less about certain things...only when it hits home does anyone care. That is a fact.

    I have not seen anything from this community besides the W2W rally and that was again clearly not even enough for a ticket to ride DUMBO. The CRF should be airing commercials with all the money they are given and there is not enough people even in this own community that care.
    Last edited by spidergirl; 07-24-2007 at 09:53 PM.

  7. #67
    Quote Originally Posted by momo3
    Dr. Young,
    Why is the likelihood of locomotor recovery lower in T level injuries than in C level injuries? I have other questions but will post later as to not totally hijack this thread.
    I think its because the thoracic vertabrae are encased in the ribs. This makes the threshold to have a compression fracture in the thoracic vertabrae higher than for the cervical vertabrae. It's easier to break your neck and do "some" damage to your cord, but still leave some pathways intact. So if you have a T-level compression fracture, chances are you've damaged more of your cord, making recovery less likely.

  8. #68
    Yesterday I saw my physiatrist for my yearly check up, and he told me to try to move my legs and close my eyes to see if I can feel my legs. I told him why bother, after 24 years of paralysis how can I get back any movement, and I don't see in my life time I'll walk again. He said that is not true you will walk again soon because the technology is moving fast and they will be able to cure me. I thought he was drunk ed and laughed. He said to me that when President Kennedy told America will go to the moon and we did, it didn't happened because the president said that but because the technology was ready for it. He was never so optimistic before, this is the only year he said that. Even though I was still sceptical it made me feel good because it was coming from him, and who knows he might know something.

    Do you ever wonder too why doctors are still every year visit ask you to try to move your legs, and touching you to see if you feel your legs even after 24 years of paralysis? Maybe they still believe it can happen.

    Last edited by manouli; 07-24-2007 at 11:13 PM.

  9. #69
    Senior Member
    Join Date
    Dec 2005
    Perth Western Australia
    Quote Originally Posted by Wise Young

    I don't think my medical hackles are up at all. Many people (not just you), including doctors, don't give the spinal cord injury field enough credit for progress. Worse, because doctors don't know the progress in the field, they are giving patients false information and the patients are not getting the best information for deciding their treatments. After 20 years of interacting with people with spinal cord injury and working in a neurosurgery department at Bellevue Hospital, I can speak from first hand experience that major therapeutic advances are not adopted by the doctors and not recognized by people in the community. Let me give you just two examples.

    In 1985, McAffee, Bohlman, and Yuan published a landmark paper in which they decompressed 70 patients with “incomplete” injury secondary to a thoracolumbar fracture, often as late as 3 months after injury. They followed 48 of these patients for an average of 3.4 years. 37 of 42 patients with motor deficits showed a significant improvement in their motor function. 14 of 32 who were unable to walk before the surgery regained full independent walking ability. 12 of these 32 patients recovered bladder and bowel recovery. They concluded that decompression has a favorable effect on neurological function. Despite this remarkable 1985 study showing that surgical decompression can restore independent locomotion in as many as 43% of the patients, surgical decompression has not been adopted as a standard of care in all parts of the country and many patients still have cord compression.

    In 1990, the second National Acute Spinal Cord Injury Study (NASCIS 2) showed that a 24-hour course of high-dose methylprednisolone significantly improved motor and sensory scores by at average of 20% compared to people treated with placebo, but only when it was given within 8 hours after injury. In a followup study (NASCIS 3), the group showed that people treated between 3-8 hours after injury with a 48 hour course of methylprednisolone had significantly better neurological scores than those treated with a 24-hour course. There was no difference between the 24- and 48-hour course in patients treated with 3 hours. NASCIS recommended treating patients with the 24-hour course of methylprednisolone if they can be treated within 3 hours and the 48-hour course if they are treated between 3-8 hours. The drug is cheap and had no significant side-effects. Despite the NASCIS 2 study published in the New England Journal of Medicine, less than 50% of Americans who were spinal-injured between 1990-1993 received the drug. There are still places in Canada and the United States where a person with spinal cord injury will not receive methylprednisolone.

    You would think that these two therapies would have been embraced by the doctors who have few other therapies to apply to their patients. In the past decade, several neurosurgical societies in the United States and Canada issued recommendations saying that methylprednisolone is an optional treatemnt for spinal cord injury and not a standard of care. These recommendations cite retrospective studies and one small randomized French clinical trial that was too underpowered to detect any effect of methylprednisolone and did not segregate complete and incomplete injuries or the timing of therapies for their analyses. The strange thing is that the doctors who say they are not convinced by NASCIS or beleive that a 20% improvement in motor and sensory scores is not “functionally significant”, would not hesitate to give therapies that have never been tested in randomized clinical trials.

    Walking Recovery in Incompletes

    In 1979, Fred Maynard published a landmark article in the Journal of Neurosurgery, reporting that only 8% of people with ASIA A recovered walking compared to 87% of people with “incomplete” spinal cord injury. Despite this publication in the premier neurosurgical journal, neurosurgeons were so pessimistic in those days that they did not decompress the spinal cord, particularly in people with so-called “complete” spinal cord injury because they did not think that there would be any recovery. In the 1970's and 1980's, I use to argue with my colleagues that we should decompress people, especially if they were “complete”, because we might have a chance to make them incomplete. Despite the 1979 Maynard study, for the last 30 years, most doctors told even incomplete spinal-injured patients that they were unlikely to recover walking.

    In 1997, I was a member of the National Advisory Board for Medical Rehabilitation Research at NIH that recommended that the National Center for Medical Rehabilitation Research fund a clinical trial to assess weight-supported ambulation training. At that time, most doctors were still quite pessimistic about the prospect of locomotor recovery after spinal cord injury and there had been a study from Germany (see Wernig, 2000) indicating that weight-supported treadmill locomotor training restored locomotion in over 50% of people who had never walked even years after spinal cord injury. In 1998, NIH issued a request for proposal and funded Bruce Dobkin from UCLA and a consortium of spinal cord injury centers to carry out the study starting in 1999.

    Several studies in mid 1990's had suggested less than 50% incidence of walking recovery in patients with incomplete spinal cord injury. In 1996, Helweg-Larsen did a prospective study of 153 patients who were paralyzed by tumor compression of the spinal cord, finding that 12 of the 74 non-walking patients recovered walking. In 1996, Waters, et al. studied 19 subjects with motor incomplete lesions from cervical spondylosis. At one year followup, 12 of the 19 (63%) were unable to walk. However, in 1997, Burns, et al. reported that 91% (30/33) of patients with ASIA C younger than 50 years became ambulatory by the time they were discharged from the hospital, compared to 42% (13/31) of ASIA C patients older than 50, and 100% (41/41) of patients with ASIA D.

    Dobkin, et al. designed a study to compare weight-supported treadmill and over-ground ambulation training after acute incomplete spinal cord injury. They studied 146 subjects that were ASIA B, C, or D after injury. In 2006, Dobkin, et al. reported that 35% of ASIA B, 92%of ASIA C, and 100% of ASIA D patients recovered independent locomotion by the end of a year. There was no difference between weight-supported treadmill trained or overground walking trained subjects. The control results came as a surprise to the group who had expected only 45% of patients with incomplete spinal cord injury to recover locomotion, based on an analysis of the Model Systems SCI Database.

    Do you think that doctors are now telling patients this data? How many people here were told shortly after injury that if they were ASIA B, they had a 35% chance of recovering independent locomotion or that if they had an ASIA C, they had a 92% chance of walking? Based on the comments from people posting on New SCI, I am not sure that most doctors are giving patients this information even now. In fact, this information has been known since the Maynard study in 1979 but the dogma that spinal-injured patients rarely recover walking is so strong that most doctors in the field either don't know or are not telling patients with incomplete injuries that they have >90% chance of recovering walking.

    Scientists parrot the clinical dogma. Many spinal cord injury scientists have never met, much less examined, a person with spinal cord injury. For the past 15 years, over 60% of spinal cord injuries in the United States have been incomplete. If >90% of people with incomplete spinal cord injury recover walking, isn't it fair and accurate to say that recovery of walking is the rule and not the exception after spinal cord injury. But, how many scientists or clinicians say this? Most research articles on spinal cord injury start with the statement that people do not recover from spinal cord injury, or something to this effect. Even clinicians who know better often parrot the dogma to patients. And, of course, we hear it from patients.

    1. Maynard FM, Reynolds GG, Fountain S, Wilmot C and Hamilton R (1979). Neurological prognosis after traumatic quadriplegia. Three-year experience of California Regional Spinal Cord Injury Care System. J Neurosurg 50: 611-6. Between January, 1974, and December, 1976, 123 patients with traumatic quadriplegia were admitted to the California Regional Spinal Cord Injury Care System. The spinal cord injury resulted from gunshot wounds in five, from a stab wound in one, from neck injuries with no bone damage seen on x-ray studies in 10, and from fracture dislocations of the cervical spine in 107. One-year following-up information was available on 114 patients. Neurological impairment using the Frankel classification system was compared at 72 hours postinjury to the 1-year follow-up examination. Fifty of 62 patients with complete injury at 72 hours were unchanged at 1 year. Five of these 62 patients had developed motor useful function in the legs or became ambulatory by 1 year, but all had sustained serious head injuries at the time of their trauma making initial neurological assessment unreliable. Ten percent of all cases had combined head injury impairing consciousness. Among 103 cognitively intact patients, none with complete injury at 72 hours were walking at 1 year. Of patients with sensory incomplete functions at 72 hours postinjury, 47% were walking at 1 year; 87% of patients with motor incomplete function at 72 hours postinjury were walking at 1 year. Spinal surgery during the first 4 weeks postinjury did not improve neurological recovery. A method of analyzing neurological and functional outcomes of spinal cork injury is presented in order to more accurately evaluate the results of future treatment protocols for acute spinal injury.
    2. McAfee PC, Bohlman HH and Yuan HA (1985). Anterior decompression of traumatic thoracolumbar fractures with incomplete neurological deficit using a retroperitoneal approach. J Bone Joint Surg Am 67: 89-104. Between 1973 and 1981, seventy patients with a spinal cord injury secondary to a thoracolumbar fracture were treated by anterior spinal-canal decompression through a retroperitoneal approach. All of these patients had an incomplete neurological deficit caused by retropulsed vertebral-body fragments and intervertebral disc material in the spinal canal. Forty-eight patients have been followed for an average of 3.4 years (range, two to 8.6 years). Either computed tomography or lateral tomography, or both, was performed after surgery on these forty-eight patients, and confirmed the successful removal of the cause of compression in all of them. No patient lost further cord or cauda equina function after the anterior decompression. Thirty-seven of the forty-two patients who had a motor deficit improved by at least one class in motor strength. Fourteen of the thirty patients whose quadriceps and hamstrings were too weak to permit walking regained full independent walking ability. Twelve of the thirty-two patients who had a conus medullaris injury demonstrated neurogenic bowel and bladder recovery. The degree of neurological recovery of spinal cord injury after anterior spinal decompression of thoracolumbar fractures appears more favorable than after other, previously reported techniques that do not decompress the spinal canal.
    3. Helweg-Larsen S (1996). Clinical outcome in metastatic spinal cord compression. A prospective study of 153 patients. Acta Neurol Scand 94: 269-75. BACKGROUND: Despite many reports on metastatic spinal cord compression, only very few prospective studies of the clinical outcome of spinal cord compression have been carried out. METHODS: 153 consecutive patients with a known malignant solid tumor and a myelographically verified diagnosis of spinal cord compression were followed with regular neurological examination. RESULTS: At time of diagnosis 79 patients were walking, while the remaining were bedridden. In total 21 of the 74 initially non-walking patients began walking after therapy. There was a need for urinary catheter in 57 (37%) patients at the time of diagnosis. During follow-up, 10 of 57 patients (18%) dispensed with the catheter. A total of 116 patients experienced radicular pain at the time of diagnosis, while in 95 of 116 patients (83%) the pain disappeared after therapy. CONCLUSION: the present study confirms, that early diagnosis, i.e., while the patients are still ambulatory, is most important, but the prognosis for recovery of ambulatory function is not as pessimistic as earlier described. In addition the results indicate that supplementary systemic therapy, when available, may have a positive influence on recovery. Department of Neurology, Rigshospitalet, Copenhagen, Denmark.
    4. Waters RL, Adkins RH, Sie IH and Yakura JS (1996). Motor recovery following spinal cord injury associated with cervical spondylosis: a collaborative study. Spinal Cord 34: 711-5. A prospective multicenter study was conducted within the National Model Spinal Cord Injury System program to examine neurological deficits and recovery patterns following spinal cord injury (SCI) in individuals with cervical spondylosis and without a spinal fracture. Nineteen patients were evaluated. Sixty-eight percent presented initially with motor incomplete lesions. Of those who presented with motor incomplete injuries at their initial examination, 69 percent had less deficit in the lower than in the upper extremities, indicative of a central cord syndrome. At follow-up, 12 subjects were unable to ambulate, four required assistance and three were able to ambulate independently. On the average, subjects doubled their initial Asia Motor Score (AMS) scores by one year following injury. Residual upper extremity weakness, however, limited the ability to ambulate. Recovery of motor strength in this group is comparable to that of individuals with incomplete tetraplegia in general but the proportion who regain ambulatory function is less. Rancho Los Amigos Medical Center, Downey, California 90242, USA.
    5. Wernig A, Nanassy A and Muller S (2000). Laufband (LB) therapy in spinal cord lesioned persons. Prog Brain Res 128: 89-97. Department of Physiology, University of Bonn, Germany.
    6. Burns SP, Golding DG, Rolle WA, Jr., Graziani V and Ditunno JF, Jr. (1997). Recovery of ambulation in motor-incomplete tetraplegia. Arch Phys Med Rehabil 78: 1169-72. OBJECTIVE: To determine the effect of age and initial neurologic status on recovery of ambulation in patients with motor-incomplete tetraplegia. STUDY DESIGN: Inception cohort study. SETTING: Urban, tertiary care hospital with Regional Spinal Cord Injury Center. PATIENTS: One hundred five patients with American Spinal Injury Association (ASIA) C or D tetraplegia at admission or within 72 hours of injury. MAIN OUTCOME MEASURE: Ambulatory status at time of discharge from inpatient rehabilitation. RESULTS: Ninety-one percent (30/33) of ASIA C patients younger than 50 years of age became ambulatory by discharge, versus 42% (13/31) ASIA C patients age 50 or older (p < .0001). All (41/41) patients initially classified as ASIA D became ambulatory by discharge. CONCLUSION: For patients with ASIA D tetraplegia, prognosis for recovery of independent ambulation is excellent. For patients with ASIA C tetraplegia, recovery of ambulation is significantly less likely if age is 50 years or older. Department of Rehabilitation Medicine, Thomas Jefferson University Hospital, Philadelphia, PA, USA.
    7. Dobkin B, Apple D, Barbeau H, Basso M, Behrman A, Deforge D, Ditunno J, Dudley G, Elashoff R, Fugate L, Harkema S, Saulino M and Scott M (2006). Weight-supported treadmill vs over-ground training for walking after acute incomplete SCI. Neurology 66: 484-93. OBJECTIVE: To compare the efficacy of step training with body weight support on a treadmill (BWSTT) with over-ground practice to the efficacy of a defined over-ground mobility therapy (CONT) in patients with incomplete spinal cord injury (SCI) admitted for inpatient rehabilitation. METHODS: A total of 146 subjects from six regional centers within 8 weeks of SCI were entered in a single-blinded, multicenter, randomized clinical trial (MRCT). Subjects were graded on the American Spinal Injury Association Impairment Scale (ASIA) as B, C, or D with levels from C5 to L3 and had a Functional Independence Measure for locomotion (FIM-L) score < 4. They received 12 weeks of equal time of BWSTT or CONT. Primary outcomes were FIM-L for ASIA B and C subjects and walking speed for ASIA C and D subjects 6 months after SCI. RESULTS: No significant differences were found at entry between treatment groups or at 6 months for FIM-L (n = 108) or walking speed and distance (n = 72). In the upper motor neuron (UMN) subjects, 35% of ASIA B, 92% of ASIA C, and all ASIA D subjects walked independently. Velocities for UMN ASIA C and D subjects were not significantly different for BWSTT (1.1 +/- 0.6 m/s, n = 30) and CONT (1.1 +/- 0.7, n = 25) groups. CONCLUSIONS: The physical therapy strategies of body weight support on a treadmill and defined overground mobility therapy did not produce different outcomes. This finding was partly due to the unexpectedly high percentage of American Spinal Injury Association C subjects who achieved functional walking speeds, irrespective of treatment. The results provide new insight into disability after incomplete spinal cord injury and affirm the importance of the multicenter, randomized clinical trial to test rehabilitation strategies. Department of Neurology, University of California Los Angeles, Neurologic Rehabilitation and Research Program, Reed Neurologic Research Center, Los Angeles, CA 90095, USA.
    8. Dobkin B, Barbeau H, Deforge D, Ditunno J, Elashoff R, Apple D, Basso M, Behrman A, Harkema S, Saulino M and Scott M (2007). The evolution of walking-related outcomes over the first 12 weeks of rehabilitation for incomplete traumatic spinal cord injury: the multicenter randomized Spinal Cord Injury Locomotor Trial. Neurorehabil Neural Repair 21: 25-35. BACKGROUND: The Spinal Cord Injury Locomotor Trial (SCILT) compared 12 weeks of step training with body weight support on a treadmill (BWSTT) that included overground practice to a defined but more conventional overground mobility intervention (CONT) in patients with incomplete traumatic SCI within 8 weeks of onset. No previous studies have reported walking-related outcomes during rehabilitation. METHODS: This single-blinded, randomized trial entered 107 American Spinal Injury Association (ASIA) C and D patients and 38 ASIA B patients with lesions between C5 and L3 who were unable to walk on admission for rehabilitation. The Functional Independence Measure (FIM-L) for walking, 15-m walking speed, and lower extremity motor score (LEMS) were collected every 2 weeks. RESULTS: No significant differences were found at entry and during the treatment phase (12-week mean FIM-L = 5, velocity = 0.8 m/s, LEMS = 35, distance walked in 6 min = 250 m). Combining the 2 arms, a FIM-L >or= 4 was achieved in < 10% of ASIA B patients, 92% of ASIA C patients, and all of ASIA D patients. Walking speed of >or= 0.6 m/s correlated with a LEMS near 40 or higher. CONCLUSIONS: Few ASIA B and most ASIA C and D patients achieved functional walking ability by the end of 12 weeks of BWSTT and CONT, consistent with the primary outcome data at 6 months. Walking-related measures assessed at 2-week intervals reveal that time after SCI is an important variable for entering patients into a trial with mobility outcomes. By about 6 weeks after entry, most patients who will recover have improved their FIM-L to >3 and are improving in walking speed. Future trials may reduce the number needed to treat by entering patients with FIM-L < 4 at > 8 weeks after onset if still graded ASIA B and at > 12 weeks if still ASIA C. Department of Neurology, University of California Los Angeles, Los Angeles, CA 90095, USA.
    i didnt really want to comment about methylpred. , Its a touchy subject for me. My daughter was not given the option and as she has gained significant trunk function back I wonder what she would have gained had she been given this. Her admission sheet had "paraplegic not quadriplegic" written in big bold letters across it. I even argued with the doctors in ICU about giving her something to reduce the inflammation of the spinal cord without even knowing that methylpred was an option at the time.
    What you seem to be saying is that what we should be doing is educating the medical profession into using these things, I agree. Its hard to give credit for progress when you are consistently told time after time by many members of the medical profession "we have nothing". It also seems to me that if a treatment doesnt come in a box marked with a drug companies logo with the word "spinal cord inury cure" written on it then it wont be accepted. This begs the question, is it the medical profession that is holding back effective treatments and not a lack of funding per se?
    I know that after my daughters injury I had more than one disagreement with her medical staff over whether there was any possibility of function return and they consistently questioned and actively discouraged any form of excercise therapy designed to maximise function. Should we be putting ouir efforts into fighting accepted medical dogma instead?

  10. #70
    Quote Originally Posted by manouli
    Yesterday I saw my physiatrist for my yearly check up, and he told me to try to move my legs and close my eyes to see if I can feel my legs. I told him why bother, after 24 years of paralysis how can I get back any movement, and I don't see in my life time I'll walk again. He said that is not true you will walk again soon because the technology is moving fast and they will be able to cure me. I thought he was drunk ed and laughed. He said to me that when President Kennedy told America will go to the moon and we did, it didn't happened because the president said that but because the technology was ready for it. He was never so optimistic before, this is the only year he said that. Even though I was still sceptical it made me feel good because it was coming from him, and who knows he might know something.

    Do you ever wonder too why doctors are still every year visit ask you to try to move your legs, and touching you to see if you feel your legs even after 24 years of paralysis? Maybe they still believe it can happen.

    My, oh my, Manouli, how I wish there were more doctors like yours. This is the exact attitude I wish the whole profession had. I know doctors have to be real in making our current situation the new reality we are bounded in and I believe this is crucial in order for most of us to become productive again. But to cut out all hope and brush off any possibility of potential benefit only serves as what it is, a self-fulfilling prophecy. The analogy to the moon landing struck a significant chord with me.
    No one ever became unsuccessful by helping others out

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