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Seeking lots of answers

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    Seeking lots of answers

    Hello Everyone --

    I stumbled across this message board and breathed a sigh of relief. I know that anyone who reads this will most likely respond.

    I am 38, married, with two children (12) and (8). My life (including my husband and my children's lives) have changed dramatically, and I can not imagine (and don't wont to think about) SCI patients who do not have a family like mine to help.

    My 78 year old father fell off his bed four (4) months ago and incurred C5-6 incomplete injury - quadraplegic (he has wrist--it sounds so silly but oh, --we are so greatful for wrist). He under went C4-5-6-7 bone fusion surgery and was in hospital/rehab for three months.

    He has been home for one month. During the last four months, I have learned more about SCI than I ever dreamed I would know.

    Each day I visit my father and try to do what ever it is that I can do to "help"; whether it is clipping toe nails, shaving, setting up for teeth brushing, stretching legs, helping with his "bridging" exercises and PT, folding laundry, taking my Mother shopping, trying to get help with medical bills, meeting with ramp contractors, cooking a meal, etc., etc., etc.

    The most difficult thing that I have to deal with is the "why" questions that my father delivers each day..........

    Why.....does it hurt so much? my legs feel like they are in water? my legs feel like they are freezing? my hands and feet swell? my wrists ache?
    Why.....does my bladder feel so spasmatic?
    Why.....don't I feel like eating?
    How.....long will it hurt?
    Will....I ever walk again?

    ........all of these questions are presented to the many doctors that we see, and none are ever answered.

    I know that I am a rookie --- and that is okay, because someday, I will be able to relay all this newly found information onto someone like me, who needs it.

    Any information that anyone can relay onto me would be soooooo very much appreciated!!

    I am reaching out to those who I know will help me, because you have experienced all of these things first hand. I know that this message is vague--I am not really looking for any "specific" thing -- I will appreciate any info that anyone responds with.

    Thank you --
    A daughter who loves her father very much,


    I am sorry to hear about your dad. You are by far in the most comprehensive site out there. I may suggest you go to the caregivers forum and the care forum for your questions. They will get more precise answers by the nurses and those who "know".

    T-10 complete

    T-10 complete
    "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well-preserved body, but rather to skid in sideways, chocolate in one hand, martini in the other, body thoroughly used up, totally worn out and screaming 'WOO HOO' what a ride!"


      LeeAnn - sorry to hear about your dad.

      I would suggest following Pat's advice as well as having you and your dad (very important) do as much reading on this board that you can.

      If you use the "Find" function key - (see it to the left above your name) - and plug in words like "swelling" or "bladder" and you will find a host of articles, commentary, discussion. [img]/forum/images/smilies/cool.gif[/img]

      Check all the forums for a variety of topics / answers.

      And above all don't be afraid to ask - anything. [img]/forum/images/smilies/smile.gif[/img]


        LeeAnn, can you tell us a little bit more about his injury? How incomplete is his injury? Did his physician talk about his ASIA grade? Does he have neuropathic pain (burning, buzzing, electric pain, etc.) or neck pain? Abnormal feelings (parasthesias) are common, and most people learn to ignore them unless they are to the degree that they are painful. If there is neuropathic pain, there are medications that can help.

        Edema in his hands is common at his level. Massage can help (learn to do it from an OT so it is done right). Elevation (on pillows) and the use of compression gloves can sometimes also be helpful. Edema in his legs and feet is best managed with the ongoing use of compression hose (TEDs or Jobst) and elevation at night. Edema in paralyzed areas is due to the lack of active muscle contractions which help to push fluid back up to the heart.

        Does he have a good urologist? Often the bladder changes during the first year, and modifications of medications and bladder care regimens are needed, even if he had a good rehab program.

        Loss of appetite can be a symptom of depression. It would be important to be sure that he is evaluated for this and appropriately treated if this is the case.

        Last but not least, if your father is a USA military veteran, he should get follow up at his closest VA SCI Center. Let us know if he is, and we can provide you with information about how to get him linked into this system.

        Hang in there and support your father. He is going through the roughest phase of adaptation to this injury right now.

        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.



          I have tried to answer some of the more general questions that your father asked in a topic entitled Attempt at "lots of answers" regarding spinal cord injury. Let me comment here regarding the specific situation of your father.

          Spinal cord injury in the elderly is becoming more common. Although the dogma is that elderly people do not recover as well from spinal cord injury and certainly poor health can impede recovery of function, I think that this is not necessarily true. Most people with "incomplete" spinal cord injury should recover substantial function, regardless of age.
          Older people tend to have a higher rate of complications from spinal cord injury. Complications tend to retard recovery but it is important that your family fight against age discrimination that pervades medical care, i.e. not being as aggressive with medical and surgical care, because of your father's age. At age 78, he may have 10-20 years of life in front of him, as long as his brain function remains at a high level. From his "why" questions, I believe that his brain is functioning at a high level. Therefore, it is even more important to be aggressive in preventing complications and treating complications when they occur. He has a good chance of recovering substantially and perhaps even walking again. Let me address three specific issues.

          1. Preventing complications. The fact that he is now home for over a month without serious complication is very good news. It is important that his bladder, skin, and vascular systems be aggressively and well taken care of.

          2. Exercise. He needs to use his bones and muscles to keep them from deteriorating. Thus, for example, he should try to get out of bed as much as possible, stand (with a standing frame), walk, and use these systems. In my opinion, the best non-stressful exercise that a person can get is to walk in a swimming pool. Being in water relieves the weight and allows the person to stand up at various depths. Swimming stimulates the cardiovascular system. You should be able to find accessible swimming pools and people who are experienced in "hydrotherapy" to work with him to set up exercises that he can do.

          3. Appetite. I noticed that one of the questions are related to not wanting to eat. He needs to talk to his doctors about ruling out and correcting specific problems such as high serum calcium, abnormal glucos tolerance, constipation, drug effects on appetite, and possible autonomic dysreflexia associated with eating. It is important to work out the type of food that he likes and a schedule of eating that gives him enough calories, the appropriate fibers to stimulate bowel movements, and of course sufficient nutrients and vitamins. His appetite should improve with time.

          Hope is perhaps the most important pre-requisite to recovery. With an "incomplete" spinal cord injury, your father has a good chance of recovering substantial function. He should not succumb to "age-ism" (medical discrimination against the aged) and aggressively seek medical and rehabilitative care that

          I attach abstracts of three recent studies regarding elderly people with spinal cord injury. It is important to note that these studies were carried out in a general environment of pessimism by doctors regarding recovery of the elderly from spinal cord injury. Krassioukov, et al. (2003) reported an increase in the incidence of complications, including infections, psychiatric disorders, pressure sores, and cardiovascular complications. Please note that these complications are all preventable. Infections of the urinary tract just requires more careful use of sterile catheterization. Pressure sores are a completely preventable phenomenon, in both young and old people with spnal cord injury. Cardiovascular complications should be aggressively treated. Putzke, et al. (2003) used a lot of jargon but the bottom line of their study is the statement that "the amount of unique variance that could be specifically attributed to age was relatively small". In other words, this suggests that age has a relatively small effect on recovery of function. Finally, Scivoletto, et al. (2003) studied 284 patients with spinal cord injury and found that "older individuals with spinal cord injury and disease do well". They pointed that out that have less favorable outcomes with respect to walking and independence, and have more medical complications, but these are not surprising given that most elderly people already have other medical problems and may be discouraged by doctors to walk and to take care of themselves.

          I hope that this is helpful.


          • Krassioukov AV, Furlan JC and Fehlings MG (2003). Medical co-morbidities, secondary complications, and mortality in elderly with acute spinal cord injury. J Neurotrauma. 20: 391-9. Department of Surgery, Division of Neurosurgery, University of Toronto, Toronto, Ontario, Canada. Despite an increasing incidence of spinal cord injury (SCI) in the elderly and evidence that age appears to influence outcome after neurotrauma, surprisingly little is known regarding clinical outcomes and secondary complications in elderly with an acute SCI. This study was undertaken to evaluate the effect of age on clinical outcomes after acute traumatic SCI managed in an acute care unit by a multidisciplinary team. A retrospective chart review of all patients with acute SCI admitted to an acute care unit at a university hospital between 1998 and 2000 was performed. Data on clinical outcomes and secondary complications in younger individuals (group 1: age < 60 years) were compared to elderly subjects [group 2: age > or = 60 years). There were 28 elderly (age 60-89 years) and 30 younger (age 17-56 years) individuals. The severity and level of SCI were similar in both groups (p = 0.11; p = 0.93). Co-morbidities were more frequent in the elderly (p < 0.01). There was a trend, which did not achieve significance, for an increased incidence of secondary complications in the elderly [57.1% versus 33.3%; p = 0.11). The most common secondary complications in both groups were infections, psychiatric disorders, pressure sores, and cardiovascular complications. Mortality rates in elderly and younger individuals with acute SCI [p = 0.41) were not significantly different. Our data suggest that rigorous attention to principles of acute SCI care can minimize previously reported higher susceptibility for secondary complications in the elderly. A multidisciplinary team approach to the management of the elderly with acute SCI is essential to minimize or prevent secondary complications.

          • Putzke JD, Barrett JJ, Richards JS and DeVivo MJ (2003). Age and spinal cord injury: an emphasis on outcomes among the elderly. J Spinal Cord Med. 26: 37-44. Department of Physical Medicine and Rehabilitation, University of Alabama at Birmingham, Birmingham, Alabama, USA. OBJECTIVES: Determine the unique effects of age across a variety of outcome domains following spinal cord injury (SCI). DESIGN: Cross-sectional; 6132 individuals with traumatic onset SCI in the National Spinal Cord Injury Statistical Center (NSCISC) database. OUTCOME MEASURES: Functional Independence Measure (FIM), Satisfaction With Life Scale (SWLS), the Craig Handicap Assessment and Reporting Technique (CHART), and the Short Form-12 (SF-12). RESULTS: Older age was most consistently associated with decreased self-reported outcomes across most domains assessed. More specifically, a significant linear decline with age was found for functional independence (FIM), overall life satisfaction (SWLS), perceived physical health (SF-12 physical health), and overall handicap (CHART-total score), particularly in the areas of physical independence, mobility, occupational functioning, and social integration (CHART subscales). However, regression analyses, controlling for numerous demographic and medical characteristics, indicated that the amount of unique variance that could be specifically attributed to age was relatively small. Age was unrelated to self-reported mental health (SF-12 mental health subscale) and economic functioning (CHART-economic self-sufficiency subscale). Pain interference in day-to-day activities (ie, a single item from SF-12) significantly increased with age. CONCLUSION: There is a small but consistent decline with age in several outcome domains following SCI. Follow-up longitudinal studies should help tease a part possible cohort effects from the effects of age.

          • Scivoletto G, Morganti B, Ditunno P, Ditunno JF and Molinari M (2003). Effects on age on spinal cord lesion patients' rehabilitation. Spinal Cord. 41: 457-64. Spinal Cord Unit, IRCCS Fondazione S. Lucia, Rome, Italy. STUDY DESIGN: The present study was undertaken to focus the age-related characteristics of a population of traumatic and nontraumatic spinal cord patients. OBJECTIVES: to examine demographic, injury and outcome characteristics of older adults with spinal cord lesions as a result of trauma and nontrauma, and to compare these characteristics with those of younger patients in matched cohorts. SETTING: Spinal Cord Unit, Fondazione Santa Lucia IRCCS, a large rehabilitation hospital of the centre-south of Italy. METHODS: In total, 284 consecutive newly injured patients with traumatic and nontraumatic spinal cord lesions were retrospectively reviewed and divided according to age into two groups: under 50 years (group 1) and over 50 years (group 2). The following information was collected: onset of lesion to admission; injury variables: aetiology, level, associated injuries, medical complications and surgical intervention; length of stay; American Spinal Injury Association (ASIA) impairment and motor scores; Barthel Index (BI) and Rivermead Mobility Index (RMI) to assess independence in daily living; Walking Index for Spinal Cord Injury to assess ambulation; patients destination at discharge. In a subset of 130 subjects, a block design, matching procedure was used to control for the covariant effects of injury characteristics, time from lesion and aetiology on age effects. RESULTS: In the entire group of 284 patients, older subjects had a higher probability of having incomplete tetraplegia of nontraumatic origin; they also showed a shorter length of stay and a higher rate of complications. In the matched cohorts, younger patients showed better neurologic recovery (intended as ASIA impairment grade improvement and motor scores increase), significantly higher Barthel Index and RMI at discharge, a higher level of independence in spontaneous bladder and bowel management and a higher frequency of independent walking. CONCLUSION: Older individuals with spinal cord injury and disease do well, but have a less favourable outcome in regard to walking, bladder and bowel independence than younger subjects and have more associated medical problems. Different rehabilitative strategies, therefore, are required for older subjects, which maximises the shorter length of stay and provides the necessary medical care and increased physical assistant resources following discharge.