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    My sister was recently paralyzed from a vascular tumor that hemmoraged at C7. She has full function in her right hand and a tiny bit (she can slightly move one finger) on her left.

    My question is this: Is there any one else out there that has had this kind of SCI. Every story that I have read the people have been involved in car or diving accidents.

    We have been told by her doctors that they have no idea what kind of recovery she will have because these things are so rare and all the research that has been done is on tramatic SCI.

    She has only been home from the hospital for about 2 1/2 weeks. But has not done a lot of therapy since (1 hour 3 days a week compared to 3 hours a day 6 days a week in rehab) How do I motivate her to keep up on what she has learned? I was with her a lot while she was in therapy, and I know what she is capable of doing. Is it wrong for me to get upset with her when she expects me to do something for her that I KNOW she can do for herself? How is the best way to handle this?

    Lately I have just been trying to keep my visits to a minimum...but she is my best friend, and I hate not being around. It just seems like she is upset with me when I make her do things that I know she can do and trys not to.

    Well, Can you tell that I am feeling a little frustration? I'm sure this is just the beginning. Thanks for letting me have a place to vent!

    Please don't withdraw from her. She's scared. She does need to do what she can for herself. I don't know any way to make her do this other than tough love. Try and get her on this site NOW. We've all been there. She's lucky to have you. Please keep us posted...

    You'd better get a big gun 'cause I'm not dead yet."
    ---The Bad Examples
    Does This Wheelchair Make My Ass Look Fat?


    • #3
      Thanks! I have been talking to her about this site over and over again, and I am going to try and get her on the computer this weekend.


        Butterfly, hemorrhage in the spinal cord is a relatively rare phenomenon. There are two types. The first is when there is a break in the blood vessel and blood accumulates around the spinal cord, causing compression and damage to the spinal cord. The second when the blood leaks into the spinal cord itself and, since blood damages the spinal, can result in paralysis. When there is a significant accumulation of blood in or around the spinal cord, the condition is called hematoma. There is a very recent paper on the subject (abstract below) that reviews what happens to people with hematomas of the spinal cord. According to Kreppel, et al. (2003), 613 cases have been reported in the medical literature since 1826. There may of course have been more because not all cases are reported. It occurs most frequently when a person is an anticoagulation (medication that prevents clotting) but about 30% of cases have no identifiable cause. It is more common in older patients (55-70 years old) and men (64%).

        Recovery of course depends on the severity of the hemorrhage. Do you know where the "vascular tumor" was located? Did the doctors operate on her to remove the clot? Recovery also takes a long time.

        I hope that others will answer your questions about your interactions with her.


        • Kreppel D, Antoniadis G and Seeling W (2003). Spinal hematoma: a literature survey with meta-analysis of 613 patients. Neurosurg Rev 26:1-49. Summary: Spinal hematoma has been described in autopsies since 1682 and as a clinical diagnosis since 1867. It is a rare and usually severe neurological disorder that, without adequate treatment, often leads to death or permanent neurological deficit. Epidural as well as subdural and subarachnoid hematomas have been investigated. Some cases of subarachnoid spinal hematoma may present with symptoms similar to those of cerebral hemorrhage. The literature offers no reliable estimates of the incidence of spinal hematoma, perhaps due to the rarity of this disorder. In the present work, 613 case studies published between 1826 and 1996 have been evaluated, which represents the largest review on this topic to date. Most cases of spinal hematoma have a multifactorial etiology whose individual components are not all understood in detail. In up to a third of cases (29.7%) of spinal hematoma, no etiological factor can be identified as the cause of the bleeding. Following idiopathic spinal hematoma, cases related to anticoagulant therapy and vascular malformations represent the second and third most common categories. Spinal and epidural anesthetic procedures in combination with anticoagulant therapy represent the fifth most common etiological group and spinal and epidural anesthetic procedures alone represent the tenth most common cause of spinal hematoma. Anticoagulant therapy alone probably does not trigger spinal hemorrhage. It is likely that there must additionally be a "locus minoris resistentiae" together with increased pressure in the interior vertebral venous plexus in order to cause spinal hemorrhage. The latter two factors are thought to be sufficient to cause spontaneous spinal hematoma. Physicians should require strict indications for the use of spinal anesthetic procedures in patients receiving anticoagulant therapy, even if the incidence of spinal hematoma following this combination is low. If spinal anesthetic procedures are performed before, during, or after anticoagulant treatment, close monitoring of the neurological status of the patient is warranted. Time limits regarding the use of anticoagulant therapy before or after spinal anesthetic procedures have been proposed and are thought to be safe for patients. Investigation of the coagulation status alone does not necessarily provide an accurate estimate of the risk of hemorrhage. The most important measure for recognizing patients at high risk is a thorough clinical history. Most spinal hematomas are localized dorsally to the spinal cord at the level of the cervicothoracic and thoracolumbar regions. Subarachnoid hematomas can extend along the entire length of the subarachnoid space. Epidural and subdural spinal hematoma present with intense, knife-like pain at the location of the hemorrhage ("coup de poignard") that may be followed in some cases by a pain-free interval of minutes to days, after which there is progressive paralysis below the affected spinal level. Subarachnoid hematoma can be associated with meningitis symptoms, disturbances of consciousness, and epileptic seizures and is often misdiagnosed as cerebral hemorrhage based on these symptoms. Most patients are between 55 and 70 years old. Of all patients with spinal hemorrhage, 63.9% are men. The examination of first choice is magnetic resonance imaging. The treatment of choice is surgical decompression. Of the patients investigated in the present work, 39.6% experienced complete recovery. The less severe the preoperative symptoms are and the more quickly surgical decompression can be performed, the better are the chances for complete recovery. It is therefore essential to recognize the relatively typical clinical presentation of spinal hematoma in a timely manner to allow correct diagnostic and therapeutic measures to be taken to maximize the patient's chance of complete recovery. Department of Anesthesiology, City Hospital Munchen-Schwabing, Kolner Platz 1, 80804 Munich, Germany.


          As Bethany said, the 'tough love' approach, painful tho it is for friends and family members, is a way to help your friend realize that she's not 'helpless and hopeless'.

          Can you both join a gym together? Or perhaps you even offering to work out with her at home? We've adapted equipment like wrist weights, and 'Therabands' for our son to use at home. Even silly things like a kid's basketball hoop that can be mounted on a wall inside, and made into a 'game'.

          We also used some rather covert measures - like putting his glass at the table a little further back each day, so he had to reach further to pull it toward him to get a drink.

          The words "I can't" aren't tolerated very well in our house - when he says that, we just counter with - "well, what can we do to figure out how you CAN?"

          Welcome to the forums, Butterfly - you are a true friend, and bless you for caring so much! Please feel free to join in on the caregivers' forum. And do get your friend to check out the forums in general. She'll find a lot of support and help here.

          Tough times don't last - tough people do.


            Butterfly, this post is for your sister.

            Dear Butterfly's sister,

            Most people recover some function after spinal cord injury, whether it is from trauma, ischemia, or hemorrhage. The recovery is usually slow and prolonged. Many people from this site, for example, have indicated that they recovered function years after injury and continue to do so. Every injury is different.

            The cause of the injury is less important than the level and severity of injury. The spinal cord has many neurons. The brain sends axons (nerve fibers) to these neurons and these neurons in turn send axons to other neurons in the spinal cord or to muscles. Therefore, injury disconnects neurons that are below the injury site from the brain.

            The neurons of the spinal cord organize movement, interpet sensation, and also control many functions of the body besides movement and sensation. For example, some of the neurons control blood vessels, bladder and intestinal function. When these neurons are disconnected from the brain, they sometimes become more excitable. Hence, they produce spasticity and even pain.

            Spasticity is increased reflex activity. Spasticity is not dangerous or bad, unless of course they are so severe that they cause injury. Spasticity tells you that the neurons below the injury are alive and active. Several drugs are available to control spasticity and they should be used only to the extent of controlling but not eliminating spasticity altogether.

            Injury to a particular level of the spinal cord may not only disconnect neurons below the injury site but also can damage some neurons at the level of injury. When that happens, the muscles that those neurons connect to may undergo atrophy (shrink). Muscles and neurons require activity. When they are inactive, they turn themselves off. That is why physical therapy is important. Some people use electrical stimulation to activate the muscles.

            Although spinal cord injury prevents some or all sensory signals from below the injury site getting to the brain, the body has other ways to communicate with your brain. For example, if you have an infection or a cause of pain, blood pressure may go up or you may sweat profusely. These kinds of responses are called autonomic dysreflexia.

            Your bladder and bowels may be paralyzed or spastic as a result of the spinal cord injury. Both of these need to be dealt with. To get around bladder paralysis, catheters are inserted to allow urine out. Bladder spasticity or contractions of the bladder when it is full may be bad when the sphincter does not open and the pressure in the bladder is high. Urine may be forced back into the kidneys and cause serious infections. Drugs are used to inhibit bladder spasticity and contraction. Occasionally, surgery may be necessary to increase the size of the bladder, etc. Likewise, your bowels may not be working well and need help to function.

            If you have any question, please do not hesitate to ask. There are many people here who have gone through the experience. In addition, we have the best spinal cord injury nurses with a lot of experience.



            • #7
              Dr. Wise:
              To answer a few of your questions. My sister had a intramedullary hemangioblastoma located at C7. She was having sharp pains and layed down to put a heating pad on her back when she became paralyzed from the neck down.

              She did receive surgery to have the tumor and blood removed. And has recovered some function since the surgery.

              She has not been tested yet for Von Hippel Lindau Disease, which I understand is linked to these type of tumors, but is supposed to be getting tested later this month. From what I understand VHL is a genetic disorder and her siblings (myself and my brother) could also have this. Is this correct? Any info that you have on this would be great. I am trying to educate myself, and the rest of the family as much as possible on not only VHL and SCI but also treatments, and research that is out there.

              This site has been AWESOME in helping me to do this. Thank you to everyone for the wonderful information!


                Briefly, I would like to tell you about my daughter Patti (age 12 & 1/2). She had a spontaneous epidural hematoma (compressing her spinal cord at C7-T1)July 13, 2002. And decompressive laminectomy on July 15, 2002. She did not get a decompression surgery at once because her condition was first misdiagnosed ( MRI showing the bleeding was misread by local radiologist). Her neurosurgeon told us the first 24 hours after the paralysis onset was crucial for her full recovery. Patti was classified ASIA B after the surgery. She stayed at two rehabilitation hospitals until October 31, 2002. Since she was released from hospital she has been doing extensive rehabilitation program at the local rehab center and at home . She has been doing ambulatory training since middle of January 2003, her arms and hands are evaluated as normal, now. Her muscles in the thoracic area are pretty weak but her hips are much stronger, and her quadriceps are working fine, now. She can take steps using long leg braces and support of a walker. Her muscles below knees just recently started showing some vital signs. She has had pretty good sensation under injury level, slightly diminishing towards her toes. Her bladder and bowels both are neurogenic but she can feel when to cath (it started a month ago plus-minus). Her recent ASIA classification was changed to C by her neurologist. She exercises at home a lot. She uses a standing frame and a nu-step bike, she swims in our pool and practices walking with a walker and minimal knee support. Emotionally, she is fine, like nothing ever happened, even though she cannot be as active as she used to be before her injury. As a parent I would do anything to help her recover as much as it is possible. Please let me know if you have any questions



                  It is good to hear about your daughter. I told my sister about her last night and she would like to get in touch with you. Could I have your email so that she can talk to you personally? Let me know.


                    Here are some recent papers on the subject:

                    • Lee DK, Choe WJ, Chung CK and Kim HJ (2003). Spinal cord hemangioblastoma: surgical strategy and clinical outcome. J Neurooncol 61:27-34. Summary: BACKGROUND AND AIM: The authors present a retrospective analysis of 14 patients treated for spinal cord hemangioblastoma (SCH). This study was conducted to evaluate and compare the difference of functional outcomes associated with the extent of surgical removal of the tumor. METHODS: Eleven patients were male and three were female, with a mean age of 37.2 years (19-62 years). Pre- and postoperative magnetic resonance imaging was performed in all cases. Preoperative angiography was performed in 11 cases and preoperative embolization in four. The follow-up period ranged from 15 to 161 months (median, 47 months). RESULTS: Thirteen patients had intramedullary tumor, and the remaining one had an extradural lesion. All patients underwent surgical removal, and total removal (TR) was achieved in 10 cases. In four patients with preoperative embolization, intraoperative bleeding was minimal and TR was possible. In three of four patients without TR, their functional outcomes were aggravated postoperatively. At the last follow-up (15-161 months), eight patients were improved, three were stationary, and three deteriorated. All patients who showed improvements underwent TR. The statistical analysis showed that TR produced a significantly better outcome than incomplete removal (p = 0.015). CONCLUSION: TR resulted in a better outcome for SCH. Preoperative embolization could be effective in the reduction of intraoperative bleeding and facilitate TR with an improved surgical outcome. Department of Neurosurgery, Seoul National University College of Medicine, Seoul, Korea.

                    • Maira G, Amante P, Denaro L, Mangiola A and Colosimo C (2001). Surgical treatment of cervical intramedullary spinal cord tumors. Neurol Res 23:835-42. Summary: The aim of this study is to determine if radical microsurgical removal of cervical intramedullary spinal cord tumors (CIMSCT) is achievable without causing respiratory, motor and sphincter deficits. Sixteen consecutive patients, who underwent surgical removal of a cervical intramedullary spinal cord tumor between 1988 and 1997, are presented. Surgical findings and results are analyzed. Patients' pre- and postoperative neurological conditions were evaluated using the clinical/functional scale of McCormick et al. The tumor was totally removed in 15 patients (93%). An improvement in sensory and motor functionality was obtained in 10 patients (63%), five patients (31%) remained stable and only one patient (6%), in whom partial removal was performed, presented a worsening of motor and sphincter functions. None of the patients who underwent total removal have shown MR signs of recurrence. The only patient in whom a partial removal was realized, presented a bulbar diffusion of the tumor and died. Microsurgical total removal can be considered the treatment of choice for CIMSCT. An accurate dissection between tumoral mass and normal spinal cord may allow, in the majority of cases, a total removal of tumor with preservation of spinal cord. Potential alterations of the spine stability must be prevented using internal or external stabilization. Institute of Neurosurgery, Catholic University, Rome, Italy.

                    • Malis LI (2002). Atraumatic bloodless removal of intramedullary hemangioblastomas of the spinal cord. J Neurosurg 97:1-6. Summary: OBJECT: The goal of this study was to summarize the author's personal experience in the surgical treatment of 19 patients with intramedullary spinal cord hemangioblastomas. METHODS: All cases were from the author's private practice and were treated between 1967 and 1990. In all cases the intramedullary hemangioblastomas were totally removed by using a unique microsurgical technique of bipolar coagulation, which is fully described in this paper. A bipolar forceps was used to shrink each tumor and detach it from its feeding and draining vessels. Tumor resection was successfully accomplished in all patients. Blood loss was minimal, averaging less than 100 ml, and what little bleeding occurred did so during laminotomy or laminectomy. No bleeding occurred during tumor removal, and no transfusions were given. All patients were symptomatic preoperatively, and all recovered or improved following surgery. CONCLUSIONS: The technique described in this paper makes tumor removal safe, effective, and relatively easy. Department of Neurosurgery, The Mount Sinai School of Medicine, New York, New York, USA.

                    • Pluta RM, Iuliano B, DeVroom HL, Nguyen T and Oldfield EH (2003). Comparison of anterior and posterior surgical approaches in the treatment of ventral spinal hemangioblastomas in patients with von Hippel-Lindau disease. J Neurosurg 98:117-24. Summary: OBJECT: Von Hippel-Lindau (VHL) disease is an autosomal-dominant neoplastic syndrome with manifestations in multiple organs, which is evoked by the deletion or mutation of a tumor suppressor gene on chromosome 3p25. Spinal hemangioblastomas (40% of VHL disease-associated lesions of the central nervous system) arise predominantly in the posterior aspect of the spinal cord and are often associated with an intraspinal cyst. Rarely, the tumor develops in the anterior aspect of the spinal cord. Ventral spinal hemangioblastomas are a surgical challenge because of difficult access and because vessels feeding the tumor originate from the anterior spinal artery. The goal of this study was to clarify whether an anterior or posterior surgical approach is better for management of hemangioblastomas of the ventral spinal cord. METHOD:. The authors performed a retrospective analysis of clinical outcomes and findings on magnetic resonance (MR) imaging studies in eight patients (two women and six men with a mean age of 34 +/- 15 years) who underwent resection of ventral spinal hemangioblastomas (nine tumors: five cervical and four thoracic). Two surgical approaches were used to resect these tumors. A posterior approach was selected to treat five patients (laminectomy and posterior myelotomy in four patients and the posterolateral approach in one patient); an anterior approach (corpectomy and arthrodesis) was selected to treat the remaining three patients. Immediately after surgery, the ability to ambulate remained unchanged in patients in whom an anterior approach had been performed, but deteriorated significantly in patients in whom a posterior approach had been used, because of motor weakness (four of five patients) and/or proprioceptive sensory loss (three of five patients). This difference in ambulation, despite significant improvements over time among patients in the posterior access group, remained significant 6 months after surgery. In all cases, MR images revealed complete resection of the tumor and in five patients significant or complete resolution of the intramedullary cyst was demonstrated (present in six of eight patients). CONCLUSIONS: The outcomes of these eight patients with hemangioblastomas of the ventral spinal cord indicate that both immediate and long-term results are better when an anterior approach is selected for resection. Surgical Neurology Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland 20892, USA.

                    • Wang Z and Liu A (1999). [Differential diagnosis and operative timing of intramedullary spinal cord tumors]. Zhongguo Yi Xue Ke Xue Yuan Xue Bao 21:88-93. Summary: OBJECTIVE: To discuss the differential diagnosis of various kinds of intramedullary spinal cord tumors, and choose the right operative timing. METHODS: On grading the dysfunction of the movement, an analysis has been made statistically for 147 cases with 160 tumors resected by microneurosurgery and confirmed pathologically. Their neuroimage have been also compared. RESULTS: The clinical manifestations of main kinds of intramedullary spinal cord tumors are not significantly different, but there are certain characteristic features in their neuroimage. The tumors of grade 0 group (normal movement) are obviously smaller than those of other grades groups. The pre- and post-operative grades of motor disturbance show a better, positive linear correlation. CONCLUSIONS: MRI, particularly its enhancement, can differentiate an ependymoma from astrocytoma and hemangioblastoma in most cases. A satisfactory result can be achieved to resect the tumor immediately by using the minimally invasive, microsurgical techniques. Department of Neurosurgery, Institute of Neurosciences, CAMS and PUMC, Beijing 100050.

                    • Weil RJ, Lonser RR, DeVroom HL, Wanebo JE and Oldfield EH (2003). Surgical management of brainstem hemangioblastomas in patients with von Hippel-Lindau disease. J Neurosurg 98:95-105. Summary: OBJECT: Hemangioblastomas of the brainstem constitute 5 to 10% of central nervous system (CNS) tumors in patients with von Hippel-Lindau (VHL) disease. At present, optimal management of brainstem hemangioblastomas associated with VHL disease is incompletely defined. In an attempt to clarify some of the uncertainty about the operative treatment of these lesions and its outcome, the authors reviewed all cases of VHL disease in which resection of brainstem hemangioblastomas was performed at the National Institutes of Health during a 10-year period. METHODS: Twelve consecutive patients with VHL disease (six male and six female patients [mean age 31.7 +/- 9 years; range 15-46 years]) who underwent 13 operations to remove 17 brainstem hemangioblastomas were included in this study (mean follow-up period, 88.4 +/- 37.4 months; range 37-144 months). Serial examinations, hospital charts, magnetic resonance images, and operative records were reviewed. To evaluate clinical course, clinical grades were assigned to each patient before and after surgery. Preoperative neurological function was the best predictor of long-term outcome. In addition, patients who underwent CNS surgeries for hemangioblastomas were more likely to improve or to remain neurologically stable. Tumor or cyst size, the presence of a cyst, or the location of the tumor (intramedullary, extramedullary, or mixed; posterior medullary, obex, or lateral) did not affect outcome. No patient was neurologically worse after brainstem surgery. At long-term follow-up review (mean 88.4 months), only one patient had declined neurologically and this was due to the cumulative neurological effects caused by eight additional hemangioblastomas of the spinal cord and their surgical treatment. CONCLUSIONS: Brainstem hemangioblastomas in patients with VHL disease can be removed safely; they generally should be resected when they become symptomatic or when the tumor has reached a size such that further growth will increase the risks associated with surgery, or in the presence of an enlarging cyst. Magnetic resonance imaging is usually sufficient for preoperative evaluation and presurgical embolization is unnecessary. The goal of surgery is complete resection of the lesion before the patient experiences a disabling neurological deficit. Surgical Neurology Branch, National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland 20892-1414, USA.

                    • Xu Q, Bao W and Pang L (2002). Diagnosis and treatment of intramedullary hemangioblastoma of cervical spinal cord. Chin Med J (Engl) 115:1010-3. Summary: OBJECTIVE: To investigate the diagnosis and surgical techniques of intramedullary hemangioblastoma of the cervical spinal cord. METHODS: MR imaging and the methods and results of surgery were analyzed in 21 patients. RESULTS: The tumors were divided into three types on MR imaging. Syringeal type, where the tumor varied in size and was accompanied by syringobulbia and syringomyelia; Cystic type, where the tumor presented as a cyst with a small mural node; and Solid type, where the tumor was revealed as a huge solid mass. All tumors were totally removed and diagnosis was confirmed by histological study. Post-operative neurological status was improved in 20 patients and aggravated in 1. CONCLUSIONS: The localization and the nature diagnosis of the tumor can be made by cervical MR imaging. Operative methods vary with tumor types. It is the most important that the tumor is dissected along the right interface and removed after devascularization. Department of Neurosurgery, Huashan Hospital, Fudan University, Shanghai 200040, China.


                      Butterfly, instead of posting people's e-mail addresses directly here (not too safe) I would suggest that you start a private topic and invite those that you want to talk to to that private topic. Only those you invite can read messages there.

                      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.