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new injury may 16, 09

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  • new injury may 16, 09

    when i was injured in 97 the i did't know anything about sci, no one new what questions to ask or where to get latest research or trial info. i read a good bit in the cure forum to keep up too date but i am a simple person, i hardly post jus check and go. anyways, on the news today i saw where a teenage girl was injured saterday 16, 09. she is from my home town. i called a good friend who works on chairs to see if he could find out where she was and offered any info i could give. he is going to find out tom. and give the parents my number. but my question is what should the do, what questions should they ask are there any trials she may be a canadate for. i've been a quad for 12 years now, i know what its like. this is a teen that probably doesn't a clue, nor her parents. i wish when i was injured someone new something. i jus thought give her parents a little bit of info and a head start if they decided to call.

    thnx rebel8
    Life is a Daring Adventure or Nothing

  • #2
    My daughter was injuried November 2008. The first week was HELL. We didn't know anything or what to ask. We didn't even know to ask what level her injury was. No one really offered up any education at the hospital. We were so overwhelmed just dealing with the grief. We had so many doctors that we didn't know who was who. We had several family and friends who wanted us to keep in touch so my friend setup a blog and updated it for us. Our daughter had many visitors. One of these visitors was my daughter's friends mother who I hadn't met before. She works in the medical field and was able to answer some questions. I hope they give you a call as I think your experience would be very helpful and comforting to them. They might be too overwhelmed at this time so you might want to offer again after a couple of weeks. Several weeks later at rehab my daughter had a visitor from a quad who offered us a lot of hope as at that time we were unsure how independent our daughter would be able to become. Keep us informed how it goes.


    • #3
      A Brief Primer for Families Facing Spinal Cord Injury
      by Wise Young, PhD MD, Rutgers University, Piscataway, NJ
      15 May 2009

      About a third of spinal cord injuries in the United States occur during the months of May, June, and July. During this period, many families will be faced with the horror of being informed that their son, daughter, wife, brother, sister, father, or mother have had spinal cord injury. I can only imagine what a father, mother, brother, or sister of a person with spinal cord injury feels. Some go into denial. Others run away. Many pray. All scour the internet for cures. They learn that they are not alone, that many others have had spinal cord injury, that it will be a long haul, that it is not the end of the world, and that the person with spinal cord injury needs them to be strong and practical. Unfortunately, in the past and still occasionally now, doctors go out of their way to give what they believe to be realistic assessments of the situation, telling the person and family that the person will not walk. This is unfortunate because clinical evidence does not support this view. If a person has some preserved sensation or voluntary movement below the injury site, that person has a strong likelihood of recovering much more function. The situation is not black or white.

      During the first 24-48 hours or acute phase after injury, many things are happening and there is not much time to think. Here is what to look for. First, the person with spinal cord injury should have received high-dose methylprednisolone (steroid) within 8 hours and preferably during the first 3 hours after injury and continued for 24-48 hours. Second, the person should have a catheter (foley) placed in the bladder, should be sent to get an MRI and CT scans. Third, if necessary, surgery should be performed to decompress the spinal cord and stabilize the spine as soon as possible. Drugs should be given to maintain blood pressure (to ensure perfusion of the spinal cord). Care must be taken to prevent decubiti (pressure sores) formation. Prophylactic antibiotics probably should be given, particularly for people who have cervical spinal cord injury, to prevent urinary tract infections and pneumonia, two common infections during the early phase of injury.

      At 48 hours, a careful and detailed neurological examination should be carried out. Based on this examination, the injury is usually classified into the following categories, defined by the American Spinal Injury Association (ASIA):
      • ASIA A - complete spinal cord injury, i.e. loss of sensation and voluntary movement below some level of the spinal cord. Note that this level below which there is no function may be considerably lower than the injury level. Since the lowest neurological segmental level of the spinal cord is the S4/5 sacral segments that innervate the anus and sphincter, if a person has loss of anal sensation and voluntary anal contraction, they are called ASIA A. There are many types of ASIA A's. The one with the worst prognosis is the person where there is complete loss of sensory and motor function below the injury site. most people have partial preservation of function for several segments below the injury site. This zone of partial preservation (ZPP) suggests better prognosis for partial recovery. Paradoxically, an ASIA A classification does not have as dismal a prognosis in somebody with head injury because the head injury often recovers, unmasking an incomplete spinal cord injury. Before methylprednisolone was used in the United States, only about 5% of people with ASIA A recovered unassisted walking. I believe that this number has increased in the last 20 years, during which methylprednisolone has been used in 60-70% of people with spinal cord injury, particularly those with severe injuries. Several clinical trials have shown that methylprednisolone significantly improves the recovery in people with ASIA A. In my personal experience, as many as 17% of people who have had ASIA A and received high dose methylprednisolone within 3 hours after injury recovered unassisted walking.
      • ASIA B. Sensory incomplete. These are people who have retained some pinprick or touch sensation in their anal region and other areas below the injury site. This is a relatively rare classification. Only 10-15% of acute spinal cord injuries are ASIA B. A substantial number (30-40%) may recover unassisted walking.
      • ASIA C. Motor incomplete. The person has some motor function but the motor score must be less than 50% of normal in the legs. About 90% of these people will recover unassisted walking if they receive encouragement and locomotor training. Some may have residual deficits or weaknesses.
      • ASIA D. Motor incomplete with over 50% motor scores in the legs. All of these can and should soon recover unassisted walking.
      • ASIA E. No sensory or motor deficit. Note that such people have spinal cord injury and may have spasticity, bladder dysfunction, neuropathic pain (pains and needles, burning sensations, etc.).

      The ASIA classification is not applicable to injuries to the lower spinal cord and cauda equina, i.e. injuries at T11 vertebral segment or below. The neurons for the legs and pelvic organs are located in the lumbosacral spinal cord located at T11-L1. Injury to this region may cause flaccid muscles. Below the L1 vertebral body, the cauda equina (horse's tail) of spinal roots descend to their respective openings to exit the spinal canal. Injuries to the cauda equina is not true spinal cord injury. While the acute (24-48 hour) therapy of cauda equina injuries is similar to other types of injury, the later care may be different from treatment of the spinal cord. For example, a person with lower spinal cord and cauda equina injuries often develops a flaccid bladder and does not develop spasticity in the legs; there is usually no need for drugs to stop bladder or leg spasticity.

      Some recovery is the rule rather than the exception after spinal cord injury. Exercise and training increases the rate and extent of recovery. Prevention of complications of spinal cord injury, i.e. bladder infection, decubiti, and bone and muscle atrophy, will contribute to overall health and recovery of the person. Recovery takes place very slowly. In most people, it will take more than a year. In people with severe injuries, the recovery may take several years before reaching a plateau. Many people with spinal cord injuries of the cervical and upper thoracic spinal cord cords develop spasticity of the bladder and legs. Both the bladder and the legs get hyperexcitable and drugs are often given to suppress such spasticity. Reducing bladder spasticity is important because it reduces increased bladder pressure that may push infected urine into the kidney to cause kidney infections. About half of people with spinal cord injury will develop neuropathic pain, often in areas of the body that have little or no sensation.

      Shortly after the injury, families rush to internet or other sources to look for some miraculous stem cell or other therapy to cure the injury. Let me state unequivocally that there is no such therapy at the present and that anybody who says that they have such a cure is misleading and should be avoided. This does not mean that there will not be curative therapies or the therapies that people are hawking are necessarily ineffective. However, I must say that I have not seen any data supporting these claims at the present. Several clinical trials are aimed at treating the subacute spinal cord injury period. These include the Cethrin trial and the Geron trial. Cethrin is a drug that may stimulate regeneration of the spinal cord and a company is sponsoring phase 2 clinical trials to evaluate the safety, efficacy, and dose of the treatment given at 2 weeks after spinal cord injury. Geron recently received permission to transplant oligodendroglial progenitor cells derived from human embryonic stem cells, to be transplanted during the first two weeks after spinal cord injury. Once past that window, there are several clinical trials that are looking at different types of rehabilitation, including locomotor training.

      For people that are more than a year after injury, we have recently announced the North American Spinal Cord Injury Network (NASCINet) trials that will randomized subjects with chronic spinal cord injury (ASIA A >1 year after injury and 6 months of stable neurological function) to a 6-week course of lithium, HLA-matched umbilical cord blood mononuclear cell transplants (UCBMC) into the spinal cord, and UCBMC plus lithium. All the subjects will then receive 6-12 weeks of intensive outpatient locomotor training. The trail will begin recruiting subjects this coming fall and examine them for 6 months. Around the middle of 2010, the treatment phase of the trial will begin. We expect the first results of the study to become available in 2011. If positive, the therapy should become available by 2012.

      In summary, the initial 24-48 hours will be a whirlwind of activity, which should include methylprednisolone (high dose steroid) initiated within 8 hours and preferably earlier, imaging of the spinal cord (MRI) and spine (CT scan), decompression of the spinal cord and stabilization of the spine, and suitable bladder and skin care. At 48 hours, the doctor should do a careful neurological examination and classify the spinal cord injury level, classification, motor and sensory score. The American Spinal Cord Association (ASIA) or International Classification system has four categories. ASIA A indicates a "complete" spinal cord injury at some level and requires the absence of sensation and motor control of the anal sphincter; 5-20% may recover unassisted ambulation. ASIA B indicates sensory "incomplete" spinal cord injury and requires anal sensation; as many as 40% may recover unassisted ambulation. ASIA C indicates motor "incomplete" spinal cord injury with preservation of less than half of the normal muscle strength; 90% should recover unassisted ambulation. ASIA D is motor "incomplete" with preservation of more than half of the muscle strength; all should recover walking. ASIA E has no motor or sensory score deficits but may have other problems such as loss of bladder and bowel control, spasticity, and neuropathic pain. There is currently no "cure" for spinal cord injury. Anybody who says that they have a cure is misleading you and should be avoided. This does not mean that there will not be curative therapies. Several planned clinical trials are aimed at treating subacute spinal cord injury, i.e. within 2 weeks after injury. These include Cethrin (a drug that is placed on the spinal cord) and Geron trial which will transplant oligodendroglial progenitor cells derived from human embryonic stem cells. One clinical trial for chronic spinal cord injury is being planned by the North American Spinal Cord Injury Network [source][/source] and will test a 6-week course of oral lithium alone, umbilical cord blood mononuclear cells (UCBMC), and UCBMC plus lithium, followed by 6-12 weeks of intensive locomotor training. There is much reason for hope.