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脊髓發生不良病患主要問題之探討

Major Problems in Patients with Spinal Dysraphism

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摘要


為瞭解台灣地區脊髓發生不良(SPinal dysrapllisml)病患所遭遇的主要問題所在,本研究收集自民國78年1月至民國78年12月共七年間在長庚紀念醫院林口院區,以此疾病住院治療病患共51名,用問卷及約診檢查進行研究探討。 病患男性24名女性27名,年齡分佈自2歲至39歲,包括Meningomyelncele30名,其中5名合併Hydrocephalus;Tethered cord 14名;Meningomyelocele with tethered cord 7名,其中一名有Arnold Chiari Malformation。以發生在腰椎部位為數最多,共30例(58.8%)薦椎次之,共18例(35.3%);頸椎有2位;尾椎僅有1位。 問卷回收共31位,其中22立可獨立步行,但步行距離皆較同年齡之人要短,有7位要使用步行輔助器;2位無法步行但只有1位坐輪椅。曾接受復健治療者共16位,僅佔31.3%。所有的病患均有均有程度大小不同之大小便功能障礙。 約診檢查共12位,其中3位僅有大小便功能障礙,其餘9位均有下肢運動功能障礙。測驗肌力可見均為不完全麻痺,其中7位大顯的足部畸形,甚至有一位因趾足(Calcaneus foot)導致兩足潰爛及跟骨骨髓炎而接受兩下肢膝截肢。智能嚴重不足者僅有一位。部份學童表示在學校因此病而受同學、朋友輕視與捉弄。顯示國內對殘障者之生活、就學環境及輔導仍有待改善。

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並列摘要


For the better understanding of problems of patients with spinal dysraphism, 51 cases were studied retrospectively by questionnaire, telephone and clinical followup. They had been admitted to Taipei Area Chang Gung Memorial Hospital from Jan 1983 to Dec. 1989 Among them 24 patients were male and 27 were female. Their age distribution were from 2 to 39 years old. Thirty patients with meningomyelocele, 5 of them had hydrocephalus; 14 with tethered cord; 7 patients had meningomyelocele with tethered cord; only one case had Arnold Chiari Malformation. The locations of lesion were by sequence; lumbar region 30 cases, (58.8%), sacral region 18 cases, (35.3%), 2 cases in cervical region, and only one case at coccyx region. There were 31 patients fulfilled the questionnaire, among them, 22 cases could walk independently, but with a shorter distance by comparison to peers; 7 patients need walking aid; 2 patients were unable to stand or walk; but only one of them had a wheelchair. All of the patients had the problems of neurogenic bowel and bladder; only 16 patients receiveld rehabilitation program (31.3%). There were 12 patients who came back for clinical followup. Three of them had bowel and bladder dysfunction only, while other 9 cases had obvious lower limbs motor dysfunction. Seven patients had foot deformities; one received bilateral below knee amputation because of osteomyelitis in calcaneal bones. Only 1 patient has severe mental retaidation. Some of them had the experience of being ridiculed at school because of their disabilities.

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