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Thread: C2 complete recovery rates?

  1. #11
    Phrenic nerve pacing and diaphragm stimulation have been carried out for over 30 years (see references below). Before phrenic nerve pacing is done, the nerve should be tested to see if phrenic nerve function is intact. Sometimes, phrenic nerve stimulation is not enough, particularly if the injury involves C3 where part of the phrenic nerve nucleus which controls the phrenic nerve.

    In diaphragm stimulation, the electrodes are placed on the diaphragm and the muscle is activated electrically. I know a woman with C1/2 who has been successfully breathing with a diaphragm stimulator since 1991. Christopher Reeve participated in an experimental diaphragm stimulator that was implanted by minimally invasive technology rather than by surgery to expose the diaphragm. I believe that Christopher was the third person to get that device and the results were published in http://www.chestjournal.org/cgi/content/full/127/2/671

    I am not sure that it is necessary to wait for one year before placing a phrenic nerve stimulator. It is true that some patients are weaned 6 or more months after injury. This is particularly true in patients who have had other injuries or lung damage, i.e. chest injury, inhalation of seawater, pneumonia. Therefore, some clinicians prefer to wait for a year before considering such pacing.

    Because the diaphragm undergoes atrophy fairly quickly in people on ventilators, it takes a long time to rebuild the muscle, and it is easier to wean a person who in on a phrenic nerve stimulator, I think that one should begin considering phrenic pacing as soon as it is clear that the person cannot be weaned from the respirator. Because diaphragm stimulation requires more invasive surgery, clinicians have tended to delay placement of such stimulators until it is clear that the patients cannot be weaned from the respirator.

    Phrenic nerve pacing should be the first choice if the person has intact phrenic nerve function and no lung damage. Diaphragm stimulation is now beginning to be less invasive and more commonly done, including even for amyotrophic lateral sclerosis (Source). It is possible to use diaphragm stimulation or phrenic nerve pacing synchronized to ventilation to prevent atrophy of the diaphragm or when the diaphragm has significant atrophy already. The stimulation will rebuild the diaphragm. If a person has an intact phrenic nerve on one side only, it is possible to combine diaphragm stimulation on one side and phrenic nerve pacing on the other side (Source). Finally, at Case Western, they are doing combined intercostal and diaphragm stimulation; this has the advantage of restoring some cough function as well (Source.

    Wise.

    • DiMarco AF (2005). Restoration of respiratory muscle function following spinal cord injury. Review of electrical and magnetic stimulation techniques. Respir Physiol Neurobiol 147: 273-87. Respiratory complications are a leading cause of morbidity and mortality in patients with spinal cord injury. Several techniques, currently available or in development, have the capacity to restore respiratory muscle function allowing these patients to live more normal lives and hopefully reduce the incidence of respiratory complications. Bilateral phrenic nerve pacing, a clinically accepted technique to restore inspiratory muscle function, allows patients with ventilator dependent tetraplegia complete freedom from mechanical ventilation. Compared to mechanical ventilation, phrenic nerve pacing provides patients with increased mobility, improved speech, improved comfort level and reduction in health care costs. The results of clinical trials of laparoscopically placed intramuscular diaphragm electrodes suggest that diaphragm pacing can also be achieved without the need for a thoracotomy and associated long hospital stay, and without manipulation of the phrenic nerve which carries a risk of phrenic nerve injury. Other clinical trials are being performed to restore inspiratory intercostal function. In patients with only unilateral phrenic nerve function who are not candidates for phrenic nerve pacing, combined intercostal and unilateral diaphragm pacing appears to provide benefits similar to that of bilateral diaphragm pacing. Clinical trials are also underway to restore expiratory muscle function. Magnetic stimulation, surface stimulation and spinal cord stimulation of the expiratory muscles are promising techniques to restore an effective cough mechanism in this patient population. These techniques hold promise to reduce the incidence of respiratory tract infections, atelectasis and respiratory failure in patients with spinal cord injury and reduce the morbidity and mortality associated with these complications. Department of Physiology and Biophysics, Case Western Reserve University, MetroHealth Medical Center, Rammelkamp Center for Education & Research, 2500 MetroHealth Drive, Cleveland, OH 44109-1998, USA. afd3@cwru.edu http://www.ncbi.nlm.nih.gov/entrez/q..._uids=16046197
    • DiMarco AF, Takaoka Y and Kowalski KE (2005). Combined intercostal and diaphragm pacing to provide artificial ventilation in patients with tetraplegia. Arch Phys Med Rehabil 86: 1200-7. OBJECTIVE: To evaluate the usefulness of combined intercostal and diaphragm pacing to maintain independence from mechanical ventilation. DESIGN: A prospective trial. SETTING: Clinical research center at a large tertiary hospital. PARTICIPANTS: Four ventilator-dependent subjects with spinal cord injury with only unilateral phrenic nerve function. INTERVENTION: During an initial surgical procedure, a multipolar epidural disk electrode was positioned on the ventral surface of the upper-thoracic spinal cord via a hemilaminectomy to activate the inspiratory intercostal muscles. A phrenic nerve electrode was implanted unilaterally via the thoracic approach. MAIN OUTCOME MEASURES: Inspired volume production and duration that subjects could be comfortably maintained when off mechanical ventilatory support. RESULTS: Initial maximum inspired volumes from combined intercostal and diaphragm stimulation ranged between .23 and .93L and significantly increased over the course of reconditioning period to between 0.55 and 1.31L; subjects could be maintained off mechanical ventilation between 16 and 24 hours a day. CONCLUSIONS: Combined intercostal and unilateral diaphragm pacing may be a useful therapeutic modality capable of maintaining long-term ventilatory support in patients with only unilateral phrenic nerve function. Departments of Physiology and Biophysics, Case Western Reserve University, MetroHealth Medical Center, 2500 MetroHealth Drive, Cleveland, OH 44109, USA. afd3@cwru.edu http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15954060
    • DiMarco AF, Onders RP, Ignagni A, Kowalski KE and Mortimer JT (2005). Phrenic nerve pacing via intramuscular diaphragm electrodes in tetraplegic subjects. Chest 127: 671-8. CONTEXT: Diaphragm pacing in ventilator-dependent tetraplegic subjects is usually achieved by the placement of phrenic nerve electrodes via thoracotomy. However, this technique may be accomplished less invasively via laparoscopic placement of IM electrodes, at a lower cost and with less risk of injury to the phrenic nerve. OBJECTIVE: To assess the feasibility of laparascopic placement of IM diaphragm electrodes to achieve long-term ventilatory support in ventilator-dependent tetraplegic subjects. DESIGN, SETTING, AND PARTICIPANTS: Two IM diaphragm electrodes were placed laparoscopically in each hemidiaphragm in five subjects with ventilator-dependent tetraplegia. Studies were performed either on an outpatient basis or with a single overnight hospitalization. Ventilator-dependent tetraplegic subjects were identified in whom bilateral phrenic nerve function was present, as determined by phrenic nerve conduction studies. Following electrode placement, subjects participated in a conditioning program to improve the strength and endurance of the diaphragm over a period of 15 to 25 weeks. The duration of the study was variable depending on the time necessary to determine the maximum duration that individuals could be maintained without mechanical ventilation support. MAIN OUTCOME MEASURES: Magnitude of inspired volume generation and duration of ventilatory support with bilateral diaphragm pacing alone. RESULTS: In four of the five subjects studied, initial bilateral diaphragm stimulation resulted in inspired volumes between 430 and 1,060 mL. Reconditioning of the diaphragm over several weeks resulted in substantial increases in inspired volumes to 1,100 to 1,240 mL. These subjects were comfortably maintained without mechanical ventilatory support for prolonged time periods by diaphragm pacing, by full-time ventilatory support in three subjects, and 20 h per day, in the fourth subject. No response to stimulation was observed in one subject, most likely secondary to denervation atrophy. CONCLUSIONS: Diaphragm pacing in ventilator-dependent tetraplegic subjects can be successfully achieved via laparascopic placement of IM electrodes. Department of Physiology and Biophysics, Case Western Reserve University, MetroHealth Medical Center, Rammelkamp Center for Education & Research, 2500 MetroHealth Dr, Cleveland, OH 44109-1998, USA. afd3@cwru.edu http://www.ncbi.nlm.nih.gov/entrez/q..._uids=15706014
    • DiMarco AF, Onders RP, Kowalski KE, Miller ME, Ferek S and Mortimer JT (2002). Phrenic nerve pacing in a tetraplegic patient via intramuscular diaphragm electrodes. Am J Respir Crit Care Med 166: 1604-6. In patients with ventilator-dependent tetraplegia, phrenic nerve pacing (PNP) provides significant clinical advantages compared with mechanical ventilation. This technique however generally requires a thoracotomy with its associated risks and in-patient hospital stay and carries some risk of phrenic nerve injury. We have developed a method by which the phrenic nerves can be activated via intramuscular diaphragm electrodes. In one patient with ventilator-dependent tetraplegia, two intramuscular diaphragm electrodes were implanted into each hemidiaphragm near the phrenic nerve motor points via laparoscopic surgery. The motor points were identified employing a previously devised mapping technique. Because inspired volumes were suboptimal on the right, a second laparoscopic procedure was necessary to position electrodes near the anterior and posterior branches of the right phrenic nerve. During bilateral stimulation, inspired volume was 580 ml. After a reconditioning program of progressively increasing diaphragm pacing, maximum inspired volumes on the left and right hemidiaphragms increased significantly. Maximum combined bilateral stimulation was 1120 ml. Importantly, the patient has been able to comfortably tolerate full-time pacing. If confirmed in additional patients, PNP with intramuscular diaphragm electrodes via laparoscopic surgery may provide a less invasive and less costly alternative to conventional PNP. Department of Physiology, Case Western Reserve University and MetroHealth Medical Center, Cleveland, Ohio 44109-1998, USA. afd3@po.cwru.edu http://www.ncbi.nlm.nih.gov/entrez/q..._uids=12471076
    • Elefteriades JA, Quin JA, Hogan JF, Holcomb WG, Letsou GV, Chlosta WF and Glenn WW (2002). Long-term follow-up of pacing of the conditioned diaphragm in quadriplegia. Pacing Clin Electrophysiol 25: 897-906. The authors have previously shown that conditioning of the diaphragm for continuous bilateral pacing is a feasible and effective means of ventilation in patients with complete respiratory paralysis from high cervical (above C3) quadriplegia. The present study reports the long-term results of continuous diaphragmatic pacing. Twelve quadriplegia patients underwent bilateral phrenic nerve pacemaker placement and diaphragm conditioning from 1981 to 1987. Pacing was initiated at 11 Hz and progressively decreased to 7.1 Hz. A pulse train duration of 1.3 seconds for adults and 0.9 seconds for children was used. Long-term follow-up information obtained included pacing status (full-time, part-time, or mechanical ventilation), ventilation parameters, and social circumstances. Of the 12 patients, 6 continued to pace full time (mean 14.8 years); all were living at home. Three patients paced for an average of 1.8 years before stopping; two were institutionalized. One patient who paced full time for 6.5 years before lapsing to part time, lived at home. Two patients were deceased; one paced continuously for 10 years before his demise, the other stopped pacing after 1 year. Patients who stopped full-time pacing did so mainly for reasons of inadequate social or financial support or associated medical problems. All patients demonstrated normal tidal volumes and arterial blood gases while pacing full time. Despite theoretical concerns about long-term nerve damage, no patient lost the ability to pace the phrenic nerve. Threshold currents did not increase over time (original/follow-up: 0.46/0.47 for right, 0.45/0.46 for left), nor did maximal currents (original/follow-up: 1.16/1.14 for right, 1.37/1.26 for left). This follow-up confirms that quadriplegic patients are able to meet long-term, full-time ventilation requirements using phrenic nerve stimulation of the conditioned diaphragm. Careful review of diaphragmatic pacing candidates with respect to associated medical conditions, social support, and motivation is essential for appropriate patient selection and successful long-term results. Sections of Cardiothoracic Surgery, Yale University School of Medicine, New Haven, Connecticut 06510, USA. john.elefteriades@yale.edu http://www.ncbi.nlm.nih.gov/entrez/q..._uids=12137341
    • DiMarco AF (2001). Neural prostheses in the respiratory system. J Rehabil Res Dev 38: 601-7. Approximately 5% of spinal cord-injured individuals suffer from respiratory muscle paralysis and require chronic mechanical ventilation. Unfortunately, this form of life support is associated with a number of undesirable side effects and discomforts. The only available alternative to mechanical ventilation is diaphragm pacing via bilateral phrenic nerve stimulation. This technique can provide patients with marked improvements in life quality and offers significant advantages compared to mechanical ventilation. Many patients, however, do not have bilateral phrenic function or are not willing to accept the risks inherent with phrenic nerve pacing and therefore are not candidates for this technique. Two alternative methods to ventilate patients with ventilator-dependent tetraplegia are reviewed in this paper. In patients with only a single functional phrenic nerve who are therefore not candidates for phrenic nerve pacing, combined intercostal muscle and unilateral phrenic nerve stimulation has recently been shown to maintain ventilatory support. In patients with bilateral phrenic nerve function, on-going studies suggest that intramuscular diaphragm pacing may be a useful alternative to direct phrenic nerve pacing. With the electrodes placed into the diaphragm laparoscopically, this method allows for the diaphragm to be activated without manipulation of the phrenic nerve, need for thoracotomy, or hospitalization. Both techniques provide benefits similar to that derived from bilateral phrenic nerve pacing and hold promise as alternative methods of ventilatory support in selected populations groups. Rammelkamp Research Center and MetroHealth Medical Center, Case Western Reserve University, Cleveland, OH 44109, USA. afd3@po.cwru.edu http://www.ncbi.nlm.nih.gov/entrez/q..._uids=11767967
    • Oo T, Watt JW, Soni BM and Sett PK (1999). Delayed diaphragm recovery in 12 patients after high cervical spinal cord injury. A retrospective review of the diaphragm status of 107 patients ventilated after acute spinal cord injury. Spinal Cord 37: 117-22. STUDY DESIGN: The functional outcome of the diaphragm after acute spinal cord injury was reviewed over a 16 year period for 107 patients who had required assisted ventilation in the acute phase. OBJECTIVES: To quantify the incidence of recovery of diaphragm function which occurred beyond the period of acute oedema; to produce a time-related profile of this as a guide to clinicians considering phrenic nerve pacing; and to assess the value of phrenic nerve testing in predicting recovery. SETTING: The Southport Regional Spinal Injuries Centre, Southport, England. METHODS: Bilateral phrenic nerve and diaphragm integrity was assessed clinically, by spirometry, and by fluoroscopy without and with phrenic nerve stimulation. RESULTS: Thirty-one per cent of all the ventilated patients (33 cases), with a level of injury between C1 and C4 (Scale A in ASIA Impairment Scale), had diaphragmatic paralysis at the time of respiratory failure. The subsequent diaphragm recovery which appeared in seven of these patients, between 40 and 393 days (mean 143), permitted weaning from ventilatory support at 93 to 430 days (mean 246) after the acute injury, with a vital capacity of over 15 ml kg(-1) at that stage. The diaphragm recovery in a further five patients, whose vital capacity remained below 10 ml kg(-1) and who could not be fully weaned, occurred significantly later, between 84 and 569 days (mean 290), P=0.053. Negative phrenic nerve tests were followed by weaning at a later interval in several cases. By contrast, one patient with an early positive phrenic stimulation test and subsequent diaphragm activity could not be weaned from the ventilator. CONCLUSION: Twenty-one per cent of the patients with initial diaphragm paralysis were ultimately able to breathe independently after 4 and 14 months, whilst a further 15% had some diaphragm recovery. Phrenic nerve testing should be repeated at 3 monthly intervals for the first year after high tetraplegia. Regional Spinal Injuries Centre, Southport and Formby NHS Trust Hospital, Merseyside. http://www.ncbi.nlm.nih.gov/entrez/q..._uids=10065750
    • Garrido-Garcia H, Mazaira Alvarez J, Martin Escribano P, Romero Ganuza J, La Banda F, Gambarrutta C, Garcia ME, Labarta C, Arroyo O, Sebastian de la Cruz F, Gutierrez R and Garcia Moreno J (1998). Treatment of chronic ventilatory failure using a diaphragmatic pacemaker. Spinal Cord 36: 310-4. We present our series of patients with chronic ventilatory failure treated with electrophrenic respiration: 13 males and nine females with a mean age of 12 +/- 11.5 years. The etiology was, 13 tetraplegia, five sequelae of surgical treatment of intracranial lesions, and four central alveolar hypoventilation. The mean duration of the conditioning period were 3-4 months. Eighteen patients (81.8%) achieved permanent, diaphragmatically-paced breathing with bilateral stimulation and in four (18.2%) patients, pacing was only during sleep. Five patients died (22.7%): two during the hospital stay and three at home; two deaths had unknown cause and three were due respectively to, lack of at-home care, recurrence of an epidermoid tumor, and sequelae of accidental disconnection of the mechanical ventilation before beginning the conditioning period. Two cases were considered failures: One patient had transitory neurapraxia lasting 80 days, and the other had an ischemic spinal cord syndrome with progressive deterioration of the left-side response to stimulation. One patient had right phrenic nerve entrapment by scar tissue and four suffered infections. The follow-up periods since pacemaker implantation are currently: 1, 11 years; 4, 10 years, and 17, less than 5 years. The results of our experience demonstrate that complete stable ventilation can be achieved using diaphragmatic pacing and that it improves the prognosis and life quality of patients with severe chronic respiratory failure. National Hospital for Paraplegics, Toledo, Spain. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=9601109
    • Weese-Mayer DE, Silvestri JM, Kenny AS, Ilbawi MN, Hauptman SA, Lipton JW, Talonen PP, Garcia HG, Watt JW, Exner G, Baer GA, Elefteriades JA, Peruzzi WT, Alex CG, Harlid R, Vincken W, Davis GM, Decramer M, Kuenzle C, Saeterhaug A and Schober JG (1996). Diaphragm pacing with a quadripolar phrenic nerve electrode: an international study. Pacing Clin Electrophysiol 19: 1311-9. We sought to determine the international experience with the quadripolar diaphragm pacer system and to test two hypotheses: the incidence of pacer complications would be (1) increased among pediatric as compared to adult patients; and (2) highest among active pediatric patients with idiopathic congenital central hypoventilation syndrome (CCHS). Data were collected via a questionnaire coupled with the Atrotech Registry data for a total of 64 patients (35 children and 29 adults) from 14 countries. Thoracic implantation of electrodes and bilateral pacer use each occurred in 94% of all subjects. Tetraplegic (vs pediatric CCHS) patients were more typically paced 24 hours/day (P = 0.001). Pacing duration averaged 2.0 +/- 1.0 years among children and 2.2 +/- 1.1 years among adults. Infections occurred among 2.9% of surgical procedures, all in pediatric CCHS patients (vs pediatric tetraplegic patients, P = 0.01). The incidence of mechanical trauma was 3.8%, without significant differences among patient groups. The incidence of presumed electrode and receiver failure were 3.1% and 5.9%, respectively, with internal component failure greater among pediatric CCHS than pediatric tetraplegic patients (P < 0.01). Intermittent or absent function of 0-4 electrode combinations occurred among 19% of all patients, with increased frequency among pediatric CCHS than pediatric tetraplegic patients (P < 0.03). Complication-free successful pacing occurred in 60% of pediatric and 52% of adult patients. In all, 94% of the pediatric and 86% of the adult patients paced successfully after the necessary intervention. Although pacer complications were not increased among pediatric as compared to adult patients, the incidence of complications was highest among the active pediatric patients with CCHS. Longitudinal study of these patients will provide invaluable information for modification and improvement of the quadripolar system. Department of Pediatrics, Rush Medical College, Rush Children's Hospital, Rush-Presbyterian-St. Luke's Medical Center, Chicago, Illinois 60612, USA. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=8880794
    • Girsch W, Koller R, Holle J, Bijak M, Lanmuller H, Mayr W and Thoma H (1996). Vienna phrenic pacemaker--experience with diaphragm pacing in children. Eur J Pediatr Surg 6: 140-3. Eight children, five boys and three girls, aging from 2 to 13 years (M = 9 +/- 3) were treated with the "Vienna phrenic pacemaker". Indication for implantation was central alveolar hypoventilation syndrome (CAH) in one case and total ventilatory insufficiency due to high cervical cord or brain stem lesion (SCI) in seven cases. Four electrodes were applied to each phrenic nerve via sternotomy. Both hemidiaphragms were paced synchronously with increasing duty cycles to condition the diaphragms for continuous electrophrenic respiration (EPR). EPR could be performed successfully in all children but one. Four children could achieve chronical EPR, one is in conditioning period. Two patients could not be discharged from hospital due to parental neglect and died after two and three years of intermittent stimulation. Six children could be discharged from hospital, two of them died after one and four years of chronic pacing. In one case tracheotomy could be closed definitively. Ventilatory insufficiency due to CAH and SCI can be treated even in children with diaphragm pacing, provided the indication for implantation, containing medical and social aspects, was made correctly. Diaphragm pacing probably will not lengthen life of severely injured children but it can increase the quality of their life and therefore should be preferred to positive pressure mechanical ventilation. Department of Plastic and Reconstructive Surgery, Surgical University Clinic, Vienna, Austria. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=8817204
    • Garrido-Garcia H, Martin-Escribano P, Palomera-Frade J, Arroyo O, Alonso-Calderon JL and Mazaira-Alvarez J (1996). Transdiaphragmatic pressure in quadriplegic individuals ventilated by diaphragmatic pacemaker. Thorax 51: 420-3. BACKGROUND: Electrophrenic pacing can be used in the management of ventilatory failure in quadriplegic patients. A study was undertaken to determine the pattern of transdiaphragmatic pressure (PDI) during the conditioning phase of electrophrenic pacing to see if it had a possible role in optimising the process of conditioning. METHODS: The tidal volume (TV) and PDI were measured in a group of six quadriplegic patients commencing ventilation by low frequency pulse stimulation (7-10 Hz) and low respiratory rate stimulation (< 10 breaths/min). RESULTS: Tidal volume increased between baseline and month 1 (4.33 ml/kg, p < 0.001) and between months 1 and 2 (3.00 ml/kg, p < 0.05) and then stabilised. PDI was higher during bilateral diaphragmatic pacing (mean (SD) 1.73 (0.30) kPa) than with either left (1.15 (0.34) kPa) or right (0.86 (0.37) kPa) unilateral pacing. PDI varied throughout the observation period, probably by interaction between recovery of the diaphragmatic fibres and the pacing regimen. CONCLUSIONS: Patients with quadriplegia due to high spinal injury can be maintained with ventilation by continuous electrophrenic pacing. The control criteria used in this study for pacing were tidal volume and the patient's tolerance, and the PDI measurement did not contribute any additional information to help with managing the conditioning process. Medical School, Universidad Autonoma de Madrid, Spain. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=8733497
    • Alonso Calderon JL, Garrido Garcia H, Perez Dominguez T and Mazaira J (1994). [Simultaneous, bilateral and permanent ventilation with a diaphragm pacing in childhood: the implantation technique and indications]. Cir Pediatr 7: 3-7. The acute effects of external stimulation were well demonstrated by the turn of the century, but the chronic application had to wait until the advent of the modern pacemaker technology. Since 1983 we have implanted bilateral diaphragm pacing in ten infants and adolescents with quadriplegia and central hypoventilation syndrome. The preferred site of implantation was the thoracic phrenic nerve. The electrophysiological status of the phrenic nerve function has before been determined in all patients. We have got bilateral and continuous ventilation, in all patients, but, in quadriplegics is necessary a conditioning period. Long term stimulation of the phrenic nerves to pace the diaphragm is an effective method of ventilatory support in selected cases. Catedra de Cirugia General, Universidad Autonoma de Madrid. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=8204426
    • Brouillette RT and Marzocchi M (1994). Diaphragm pacing: clinical and experimental results. Biol Neonate 65: 265-71. Over the last 26 years diaphragm pacing has been used in over 400 adults and 70 children to support ventilation and oxygenation. Diaphragm pacing can be useful for conditions in which the brain stem respiratory centers provide little or no stimulation to the respiratory muscles, i.e. central hypoventilation syndrome, Arnold-Chiari malformation/brain stem dysfunction, and high quadriplegia. Because the pacing systems are so portable, the greatest advantages accrue to those patients who require ventilatory support both while awake and asleep. Infants and children require tracheostomy to avoid upper airway obstruction and bilateral pacing to meet higher metabolic demands. The stimulus parameters most appropriate for pediatric patients have been characterized as low stimulus frequency, short inspiratory time, and moderate respiratory rate. Use of similar stimulus parameters in an immature animal model has resulted in preservation of diaphragmatic structure and function but transformation of the diaphragm from a mixed muscle to one with a uniform population of type 1, fatigue-resistant fibers (physiologic, histochemical, myosin isoform, and ultrastructural evidence). In 33 pediatric patients, representing 96 patient-years of use, there were 26 failures of the pacing systems requiring removal and/or replacement of the internal components. Mean time to failure was 56 months. Of our 36 patients who had diaphragm pacing systems implanted, 26 are alive and 22 are currently using the pacing systems. wo recent advances may further improve the long-term outcome of patients using diaphragm pacing. Smaller, better encapsulated receivers may improve system longevity and a new stimulus electrode may reduce the risk of diaphragmatic damage. Department of Pediatrics, Montreal Children's Hospital, Canada. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=8038293
    • McEwen DR (1993). Diaphragmatic pacing. An option for patients with quadriplegic respiratory paralysis. Aorn J 58: 547-58. Recent advances in design, increased reliability, and computerized pacing provide an exciting alternative to mechanical ventilation for the quadriplegic patient. Research into the development of totally implantable, demand-type respiratory pacemakers is ongoing. Careful patient selection, meticulous surgical technique, adequate training in the use of the device, and conscientious follow-up contribute to a successful outcome--increased mobility and independence for the ventilator-dependent quadriplegic patient. Audie L. Murphy Memorial Veterans Hospital, San Antonio, Texas. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=8285948
    • Gorton S, Burke C and Appleton DB (1993). Chronic diaphragmatic pacing in a quadriplegic boy. J Paediatr Child Health 29: 66-7. Diaphragmatic pacing is a method of long-term artificial ventilation that is preferable to other forms of ventilation in suitable patients. Its use is described in a 14 year old quadriplegic boy who was previously hospital dependent and required continuous positive pressure ventilation. Department of Neurology, Royal Children's Hospital, Brisbane, Queensland, Australia. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=8461185
    • Campbell DA, Homan SD, McCulloch GA, Stern LM and Leckie WJ (1992). Phrenic nerve pacing in two young quadriplegic ventilator-dependent patients. Aust N Z J Med 22: 463-8. Patients who survive high cervical injury are usually dependent on mechanical ventilation and tracheostomy if the lesion above C3 is complete. We report our experience with phrenic nerve pacing (PNP) to achieve ventilator-independence in two young quadriplegic patients. A diaphragm conditioning programme, and combination of low frequency electrophrenic stimulation within each inspiratory burst and low breathing frequency enabled both patients initially to achieve continuous 24 hour ventilation independent of mechanical ventilation. One patient reverted to overnight mechanical ventilation (six hours) after three years. PNP should be considered in ventilator dependent patients with high cervical injury to achieve independence and improve quality of life. Thoracic Medicine Unit, Queen Elizabeth Hospital, Adelaide, SA. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=1445036
    • Elefteriades JA, Hogan JF, Handler A and Loke JS (1992). Long-term follow-up of bilateral pacing of the diaphragm in quadriplegia. N Engl J Med 326: 1433-4. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=1569991
    • Cheng H, Wang LS, Pan HC, Shoung HM and Lee LS (1992). [Diaphragm pacing for the ventilatory support of the quadriplegic patients with respiratory paralysis]. Zhonghua Yi Xue Za Zhi (Taipei) 49: 116-22. Electrical stimulation of the phrenic nerve to pace the diaphragm in patients with chronic ventilatory insufficiency has been an established therapeutic modality since William W.L.Glenn first described using radiofrequency signals in 1978 to stimulate the phrenic nerves. Before this event, patients who were ventilator-dependent and thus bedridden because of respiratory paralysis associated with quadriplegia usually anticipated little chance for physical or psychosocial rehabilitation. Two cases of C1-C2 subluxtion with cord injury and chronic ventilatory insufficiency were implanted at VGH-Taipei with diaphragm pacemaker in 1988. Postoperative phrenic nerve stimulation was given according to individual training schedule. One case with total phrenic paralysis received bilateral phrenic nerve stimulation and became weaned from the ventilator 6 months later. The other case with partially active ventilatory function received unilateral phrenic nerve stimulation to compensate the ventilation. However, its final outcome still showed the necessity of a bilateral mode to achieve adequate ventilation irrespective of strenuous training for 2 years. Division of Surgery, National Yang-Ming Medical College. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=1315192
    • Baer GA, Talonen PP, Hakkinen VK, Frey H, Ojala JK and Markkula H (1992). [Functional electric stimulation of the phrenic nerve and its clinical significance]. Nord Med 107: 191-4. The peripheral parts of the phrenic nerve are healthy in some of the patients who require permanent or intermittent care in a respirator owing to reduced respiratory function of central aetiology. In such cases, continual care in a mechanical respirator can be avoided, and diaphragm function maintained by means of functional electrical stimulation (FES) of the phrenic nerve with carefully controlled electrical impulses. The method is suitable for use in certain cases of quadriplegia, or in patients with sleep apnoea. Experience with the method has shown that health care costs can be reduced and the patients' quality of life improved. In some cases, the patient may even regain partial work capacity. Anaestesiavdelningen, Tammerfors universitetssjukhus. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=1608749
    • Tibballs J (1991). Diaphragmatic pacing: an alternative to long-term mechanical ventilation. Anaesth Intensive Care 19: 597-601. Electrical percutaneous stimulation of the phrenic nerves was first employed in 1948 by Sarnoff to provide temporary artificial ventilation in patients with respiratory failure. However, the technique was limited by development of infection around the electrode. Short-term radiofrequency stimulation of the phrenic nerves was first utilised by Glenn in 1964 and adapted to long-term use in patients with central hypoventilation in 1968 and with traumatic quadriplegia in 1972. The technique employed alternate pacing of each hemidiaphragm with high frequency stimulation (25-30 Hz) with a respiratory rate of 12 to 17 per minute which, in a series of 17 quadriplegic adults, although initially successful, was self-limiting because of eventual damage to the nerves and diaphragms. More recently, continuous bilateral simultaneous low frequency (up to 8 Hz) stimulation with a respiratory rate of 5 to 9 per minute has not induced myopathic changes. This phenomenon has been attributed to: 1. the conversion of the mixture of slow and fast twitch fibres in the diaphragm to a uniform population of fatigue resistant fibres induced by low frequency stimulation, and 2. the reduction in the total current necessary to achieve adequate gas exchange when both diaphragms contract simultaneously with the less frequent stimulation at lower energy. Diaphragmatic pacing has been applied to infants and children with emphasis on the selection of patients and optimum setting of stimulus parameters. This communication presents a case report of diaphragmatic pacing in a child with a review of the principles of application. The advantages and disadvantages compared to mechanical ventilation are also discussed. Intensive Care Unit, Royal Children's Hospital, Melbourne, Victoria, Australia. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=1750649
    • Biering-Sorensen F, Jacobsen E, Hjelms E, Fodstad H and Trojaborg W (1990). [Diaphragm pacing by electric stimulation of the phrenic nerves]. Ugeskr Laeger 152: 1143-5. Artificial ventilation by electric stimulation of the phrenic nerves has become clinically significant within the past 20 years and, in the world as a whole, approximately 700 patients have been treated with implanted diaphragmatic pacemakers. The two first patients in whom diaphragmatic pacemakers were implanted in Denmark, had sustained accidental fractures of the second cervical vertebra with subsequent high cervical spinal cord lesions with not only tetraplegia but also respiratory arrest. In both patients, diaphragmatic pacemakers were implanted bilaterally and these were employed for 12-14 hours daily while ventilation with a respirator was employed at night. The main indications for diaphragmatic pacing are paralysis of respiration following high cervical spinal traumata and the chronic central hypoventilation syndrome (sleep apnoea of Undine's curse). Diaphragmatic pacing may improve the mode of ventilation and the quality of life for patients with tetraplegia and respiratory insufficiency. On account of the potential technical problems, the risk of complications and the limited number of patients in whom this operation is suitable, implantation of diaphragmatic pacemakers should be concentrated in a few centres and probably only one in Denmark. Fysiurgisk Hospital, Hornbaek, Rigshospitalet, Kobenhavn. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=2330639
    • Baer GA, Talonen PP, Hakkinen V, Exner G and Yrjola H (1990). Phrenic nerve stimulation in tetraplegia. A new regimen to condition the diaphragm for full-time respiration. Scand J Rehabil Med 22: 107-11. Unipolar phrenic nerve stimulation (diaphragm pacing) has been used for ventilation of patients with C2 tetraplegia. Four-pole sequential nerve stimulation delays muscle fatigue when compared with unipolar stimulation. This may help to achieve more frequently long-term full-time bilateral electroventilation. Four-pole sequential nerve stimulation also offers an opportunity to shorten the conditioning phase of the hypotrophic diaphragm from about 6 to 2 months. The new conditioning regimen was tested successfully in two patients with C2 tetraplegia. The new stimulation method and conditioning regimen remarkably shorten the time after injury during which mechanical ventilation is needed. This will give the patients earlier access to rehabilitation centres for spinal cord injuries and will diminish the work load of the personnel. Tampere University Central Hospital, Finland. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=2363024
    • Miller JI, Farmer JA, Stuart W and Apple D (1990). Phrenic nerve pacing of the quadriplegic patient. J Thorac Cardiovasc Surg 99: 35-9; discussion 39-40. Phrenic nerve pacing can be used to free a quadriplegic patient from ventilatory dependency. During a 6-year period (1982 to 1988), 23 patients with an age range of 17 to 63 years (mean 31 years) underwent implantation of a phrenic nerve pacemaker because of ventilatory dependency resulting from quadriplegia. Fourteen patients had a unilateral phrenic nerve implant and nine had a bilateral implant. The time from injury to implantation was 12 to 16 weeks. The site of implantation was the cervical phrenic nerve in 13 patients and the thoracic phrenic nerve in 10 patients. During the past 24 months, only a transthoracic approach has been used. The indication for pacing was failure to be weaned from ventilatory support in all patients. Failure to stimulate the phrenic nerve at implantation was noted in three patients, despite preoperative testing indicating an acceptable response. There were no deaths, and minor complications developed in three patients. Follow-up is available in all patients: Eight patients are completely free from the ventilator; nine patients are in markedly improved condition but require the ventilator at night; three patients are in moderately improved condition; and three patients had no response. Three patients required reexploration for component failure from 6 weeks to 18 months after implantation. Joseph B. Whitehead Department of Surgery, Emory University School of Medicine, Atlanta, Ga. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=2294363
    • Hunt CE, Brouillette RT, Weese-Mayer DE, Morrow A and Ilbawi MN (1988). Diaphragm pacing in infants and children. Pacing Clin Electrophysiol 11: 2135-41. Since 1976 we have implanted bilateral diaphragm pacers in 34 infants and children: 26 with central hypoventilation syndrome (CHS), three with myelomeningocele, and five with quadriplegia. Compared to adults, several modifications have been necessary to achieve effective ventilation in infants and younger children. In all instances, a tracheostomy has been necessary due to impaired neuromuscular control of upper airway patency during pacing. Bilateral pacing has been necessary to achieve adequate ventilation; in the CHS children with normal awake ventilation, bilateral pacing during sleep eliminates the need for positive pressure ventilation. For the remaining children, adequate awake ventilation is achieved with bilateral pacing, thus permitting substantially greater mobility and limiting use of the ventilator to sleep time. Our longest survivor has now been paced for 10.7 years, and in no instance has phrenic nerve damage occurred secondary to electrical stimulation. Our current pacing regime is characterized by moderate respiratory rates (21 breaths/min), long interpulse intervals (95 ms), and short inspiratory times (0.6 sec), resulting in 50%-75% fewer stimuli/min compared to our previous regime. For all infants and children requiring 24-hour ventilatory assistance, our recent successes in maintaining ventilation using significantly fewer stimuli suggest that long-term continuous pacing is a realistic future goal. Department of Pediatrics, Children's Memorial Hospital, Chicago, Illinois. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=2463600
    • Nochomovitz ML, Peterson DK and Stellato TA (1988). Electrical activation of the diaphragm. Clin Chest Med 9: 349-58. The physiology of electrical activation of the diaphragm is reviewed, with emphasis upon the respiratory mechanics of the diaphragm and its action upon other respiratory structures. The application of diaphragm pacing is discussed in terms of candidate selection, evaluation, and its future as a treatment modality for respiratory insufficiency. Pulmonary Treatment Center, University Hospitals of Cleveland, Ohio. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=3292133
    • Moxham J and Potter D (1988). Diaphragm pacing. Thorax 43: 161-2. Department of Thoracic Medicine, King's College Hospital, London. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=3261459
    • Harpin RP, Gignac SP, Epstein SW, Gallacher WN and Vanderlinden RG (1986). Diaphragm pacing and continuous positive airway pressure. Am Rev Respir Dis 134: 1321-3. The effect of changes in continuous positive airway pressure (CPAP) on the tidal volume generation by the diaphragm during electrical stimulation of the phrenic nerves in a quadriplegic patient is presented. Measurements of tidal volume, end-tidal PCO2, arterial PCO2, oxygen consumption, physiologic dead space to tidal volume ratio, diaphragm length, and thoracic and abdominal dimensions were made at values of CPAP from 0 to 20 cm H2O during periods of diaphragm pacing. Total respiratory compliance (TRC) was measured during controlled ventilation with incremental positive end-expiratory pressure (PEEP) from 0 to 20 cm H2O. A significant negative correlation was found between increasing CPAP and generated tidal volumes. This correlation was seen to occur even when TRC was constant at degrees of CPAP from 0 to 7.5 cm H2O. When phrenic nerve stimulation was commenced, oxygen consumption rose significantly from values obtained during controlled ventilation, but there was no significant correlation between changes in CPAP and the rise in oxygen consumption. Using inductance methods, thoracic and abdominal diameters were seen to rise as CPAP was increased. As suggested by the decrease in the length of the vertical and horizontal portions of the diaphragm in the chest roentgenogram, the conformation of the diaphragm also changed. It is suggested that the operating length and conformation of the diaphragm are principal factors affecting tidal volume generation during electrical stimulation of the phrenic nerves. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=3538959
    • Nochomovitz ML, Hopkins M, Brodkey J, Montenegro H, Mortimer JT and Cherniack NS (1984). Conditioning of the diaphragm with phrenic nerve stimulation after prolonged disuse. Am Rev Respir Dis 130: 685-8. We studied the effect of electrical stimulation of the phrenic nerve on the force frequency relationship of the disused diaphragm. A high quadriplegic who had been totally ventilator dependent for 6 months following a C2 fracture received bilateral phrenic nerve stimulators. During a 6-wk period of conditioning by electrical stimulation, the force of diaphragm contraction was assessed by measurement of transdiaphragmatic pressures during stimulation of each nerve over a range of frequencies. Tidal volume as well as rib cage and abdominal motion were studied. There was an upward shift of the force frequency relationship of the diaphragm over the 4-month period of phrenic nerve pacing using repetitive stimulus trains of 14 to 28 Hz. This improvement appeared to plateau at about 11 wk. The increase in contractility was accompanied by a progressive diminution in the stimulus frequency at which fusion of the contraction occurred. The disused diaphragm, like other skeletal muscle, may be conditioned with electrical stimulation. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=6333194
    • Glenn WW, Hogan JF, Loke JS, Ciesielski TE, Phelps ML and Rowedder R (1984). Ventilatory support by pacing of the conditioned diaphragm in quadriplegia. N Engl J Med 310: 1150-5. We provided full-time ventilatory support in five patients with respiratory paralysis accompanying quadriplegia by continuous electrical pacing of both hemidiaphragms simultaneously for 11 to 33 months through the application to the phrenic nerves of a low-frequency stimulus. The strength and endurance of the diaphragm muscle increased with pacing. Biopsy specimens taken from two patients who had uninterrupted stimulation for 6 and 16 weeks showed changes suggestive of the development of fatigue-resistant muscle fibers. When we compared these results with those of our earlier experience with intermittent unilateral stimulation of the diaphragm in 17 patients with respiratory paralysis, we found that continuous bilateral pacing using low-frequency stimulation appeared to be superior because of more efficient ventilation of both lungs, fewer total coulombs required to effect the same ventilation, and absence of myopathic changes in the diaphragm muscle. For patients with respiratory paralysis and intact phrenic nerves, continuous simultaneous pacing of both hemidiaphragms with low-frequency stimulation and a slow respiratory rate is a satisfactory method of providing full-time ventilatory support. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=6608692
    • Collier PS and Wakeling LM (1982). Diaphragmatic pacing. A new procedure for high spinal cord lesions. Physiotherapy 68: 47. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=6980425
    • MacLean IC and Mattioni TA (1981). Phrenic nerve conduction studies: a new technique and its application in quadriplegic patients. Arch Phys Med Rehabil 62: 70-3. Although a few reports of phrenic nerve stimulation have appeared over the past dozen years, electromyographers have not readily accepted these methods. Perhaps this is because the techniques are considered unreliable, or because there is a major element of patient discomfort. In this study a simple, safe, and relatively painless procedure was devised for placing a needle near the phrenic nerve for use as a stimulating electrode. Also, the positions of the recording electrodes were relocated until a site was found that consistently provided a response with an initial negative deflection in all subjects. Emphasis has been on improving technique. A group of 60 nerves in 30 normal subjects was studied. The mean latency was 7.44 +/- 0.59msec, and the mean difference between right and left was 0.08 +/- 0.42msec. A response was obtained in all nerves examined. In addition, 13 patients with quadriplegia due to spinal cord injury were studied. This method now permits reliable analysis of localized phrenic nerve lesions and abnormalities induced in either the phrenic nerve or diaphragm by generalized disease processes. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=6972202
    • Glenn WW, Hogan JF and Phelps ML (1980). Ventilatory support of the quadriplegic patient with respiratory paralysis by diaphragm pacing. Surg Clin North Am 60: 1055-78. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=6968983
    • Broggi G, Franzini A and Borroni V (1980). Phrenic nerve pacing in reversible cervical cord lesion: a case report. Acta Neurochir (Wien) 51: 273-8. Phrenic nerve pacing was performed in a patient with tetraplegia and complete respiratory insufficiency soon after cervical decompressive laminectomy for spondylotic myelopathy. The electrophrenic stimulation, in spite of being performed only unilaterally, gave respiratory autonomy to the patient, who was then no longer dependent on mechanical ventilation. This allowed him to move freely out of bed and have intensive motor rehabilitation, which in the end resulted in a satisfactory recovery. The stimulator was removed when no longer needed. The technique, the physiological parameters, and the indications for diaphragm pacing are discussed. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=6966121
    • Glenn WW (1978). Diaphragm pacing: present status. Pacing Clin Electrophysiol 1: 357-70. http://www.ncbi.nlm.nih.gov/entrez/q...ist_uids=82954
    • Roy-Camille R, Saillant G, Sagnet P, Berteaux D, Martignon M, Olschitzky R and Germaine A (1976). [Diaphragmatic electric stimulation for traumatic tetraplegia]. Nouv Presse Med 5: 345-7. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=1264705
    • Krieger AJ, Detwiler JS and Fandozzi R (1974). Electrophrenic respiration: a breathing support system in quadriplegia. Crit Care Med 2: 155-8. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=4837485
    • Glenn WW, Holcomb WG, McLaughlin AJ, O'Hare JM, Hogan JF and Yasuda R (1972). Total ventilatory support in a quadriplegic patient with radiofrequency electrophrenic respiration. N Engl J Med 286: 513-6. http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=4501052

  2. #12
    Junior Member
    Join Date
    Apr 2002
    Location
    westlake village, California
    Posts
    24

    spontaneous recovery

    i don't know how to start a new thread, but this is fairly appropriate. i was searching for "spontaneous recovery" and found this "old" info.... or is it old?

    by Wise:

    People with "complete" spinal cord injury (ASIA A) rarely recover walking. It can happen but only when the patient becomes "incomplete" fairly early after the injury. ....
    In my experience, people who have had ASIA A or ASIA B for more than a year are very unlikely to spontaneously recover locomotion. I don't think that I have ever seen a convincing case. ....
    Please, it is important that people do not misinterpret what I say. Spontaneous locomotor recovery from chronic "complete" spinal cord injury is very rare. It may happen if there is something pressing on the spinal cord and the cord is decompressed. It may happen in somebody who has head injury and then recovered from the head injury. But, it is rare. ...

    Wise.

    my daughter, injured 11/13/01 was diagnosed as asia a complete at Kessler (c-5). she had a fragment pressing into the cord anterior, and fracture on the back of the column, stablized with rod and screws, and bone from hip. the fragment was compression retro-fitted twice (initially in Cancun, then again at Mass General a couple days later). it was after a couple years she began sensation with stim in the anal area. we have done almost every kind of therapy over the years. FES bike until that was painful when she began to recover sensation in legs. we bought portable HBOT. etc, etc. recovery is very slow but steady. sensation thruout body, altho only completely accurate thru lower back (she now complains of lower back pain when for ex slumped in the wheelchair too long). motor is descending, and fairly good trunk control. tricepts are pretty good, wrist flexor strong now, wrist extension and grip is somewhat there, gravity neutral. voluntary leg movement beginning to appear. thank God for a great physical therapist who comes monthly to assess progress and carefully stretches and tests all parts of body, as it has never been strictly top/down recovery. as fingers nerves have a longer regrowth path than the trunk, i am theorizing that is the reason for trunk before fingers... any comments? nerve pain has been very bad for years. hypersensitivity with the cathing (so no indwelling catheter), feels when leaking. now bowel progam is hypersensitive. really questioning whether years of pain with recovery is worth it, and i can't believe i am saying that! huge question: would stem cell injection start healing which might also go thru all the pain of re-growth, re-connecting or healing? it has been an extremely painful journey, (forgot to mention major focus on natural supplements for body to heal in recent years) and would this happen to everyone? but this is spontaneous recovery of asia a with beginning signs probably 2 years post injury, and seems to be no plateaus or stopping now, why should there be, on way to complete recovery.

  3. #13
    Junior Member
    Join Date
    Apr 2002
    Location
    westlake village, California
    Posts
    24

    spontaneous recovery

    i don't know how to start a new thread, but this is fairly appropriate. i was searching for "spontaneous recovery" and found this "old" info.... or is it old?

    by Wise:

    People with "complete" spinal cord injury (ASIA A) rarely recover walking. It can happen but only when the patient becomes "incomplete" fairly early after the injury. ....
    In my experience, people who have had ASIA A or ASIA B for more than a year are very unlikely to spontaneously recover locomotion. I don't think that I have ever seen a convincing case. ....
    Please, it is important that people do not misinterpret what I say. Spontaneous locomotor recovery from chronic "complete" spinal cord injury is very rare. It may happen if there is something pressing on the spinal cord and the cord is decompressed. It may happen in somebody who has head injury and then recovered from the head injury. But, it is rare. ...

    Wise.

    my daughter, injured 11/13/01 was diagnosed as asia a complete at Kessler (c-5). she had a fragment pressing into the cord anterior, and fracture on the back of the column, stablized with rod and screws, and bone from hip. the fragment was compression retro-fitted twice (initially in Cancun, then again at Mass General a couple days later). it was after a couple years she began sensation with stim in the anal area. we have done almost every kind of therapy over the years. FES bike until that was painful when she began to recover sensation in legs. we bought portable HBOT. etc, etc. recovery is very slow but steady. sensation thruout body, altho only completely accurate thru lower back (she now complains of lower back pain when for ex slumped in the wheelchair too long). motor is descending, and fairly good trunk control. tricepts are pretty good, wrist flexor strong now, wrist extension and grip is somewhat there, gravity neutral. voluntary leg movement beginning to appear. thank God for a great physical therapist who comes monthly to assess progress and carefully stretches and tests all parts of body, as it has never been strictly top/down recovery. as fingers nerves have a longer regrowth path than the trunk, i am theorizing that is the reason for trunk before fingers... any comments? nerve pain has been very bad for years. hypersensitivity with the cathing (so no indwelling catheter), feels when leaking. now bowel progam is hypersensitive. really questioning whether years of pain with recovery is worth it, and i can't believe i am saying that! huge question: would stem cell injection start healing which might also go thru all the pain of re-growth, re-connecting or healing? it has been an extremely painful journey, (forgot to mention major focus on natural supplements for body to heal in recent years) and would this happen to everyone? but this is spontaneous recovery of asia a with beginning signs probably 2 years post injury, and seems to be no plateaus or stopping now, why should there be, on way to complete recovery.

  4. #14
    This is a great story and as Dr. Young said it was rare and just goes to tell us all not to give up. The nerve pain can be terible . Hope she is on NSAIDS, gabapentin or Lyrica and Cymbalta( can take with Gabpentin to start with. There are other meds but her SCI speciaist or pain specialist should be helping max her out on those meds. Please let us know how she recovers and keep up the good work. An inspiration for all but as Dr. Young said it is rare but a person has to do everything they can to see if they can recover and yes,it is a long journey.

    CWO

  5. #15
    Junior Member
    Join Date
    Apr 2002
    Location
    westlake village, California
    Posts
    24

    pain meds

    pain meds has been a journey of increasing kinds of meds and doses. she has very high tolerance. last january hit a crisis of pain while on so many and i had to do my own research and come up with opoid hyperalgesia, where the pain meds turn on you and actually cause increased pain themselves. got new pain dr who dropped some of the opiates, kept lyrica and nortriptyline, clonazepam, dilaudid, and added methadone. she has had the implanted electric stimulator for 3 years. narcotics or any other med don't help that much. best things are medical marijuana and meditation.

  6. #16
    Quote Originally Posted by limplaura View Post
    i don't know how to start a new thread, but this is fairly appropriate. i was searching for "spontaneous recovery" and found this "old" info.... or is it old?

    by Wise:

    People with "complete" spinal cord injury (ASIA A) rarely recover walking. It can happen but only when the patient becomes "incomplete" fairly early after the injury. ....
    In my experience, people who have had ASIA A or ASIA B for more than a year are very unlikely to spontaneously recover locomotion. I don't think that I have ever seen a convincing case. ....
    Please, it is important that people do not misinterpret what I say. Spontaneous locomotor recovery from chronic "complete" spinal cord injury is very rare. It may happen if there is something pressing on the spinal cord and the cord is decompressed. It may happen in somebody who has head injury and then recovered from the head injury. But, it is rare. ...

    Wise.

    my daughter, injured 11/13/01 was diagnosed as asia a complete at Kessler (c-5). she had a fragment pressing into the cord anterior, and fracture on the back of the column, stablized with rod and screws, and bone from hip. the fragment was compression retro-fitted twice (initially in Cancun, then again at Mass General a couple days later). it was after a couple years she began sensation with stim in the anal area. we have done almost every kind of therapy over the years. FES bike until that was painful when she began to recover sensation in legs. we bought portable HBOT. etc, etc. recovery is very slow but steady. sensation thruout body, altho only completely accurate thru lower back (she now complains of lower back pain when for ex slumped in the wheelchair too long). motor is descending, and fairly good trunk control. tricepts are pretty good, wrist flexor strong now, wrist extension and grip is somewhat there, gravity neutral. voluntary leg movement beginning to appear. thank God for a great physical therapist who comes monthly to assess progress and carefully stretches and tests all parts of body, as it has never been strictly top/down recovery. as fingers nerves have a longer regrowth path than the trunk, i am theorizing that is the reason for trunk before fingers... any comments? nerve pain has been very bad for years. hypersensitivity with the cathing (so no indwelling catheter), feels when leaking. now bowel progam is hypersensitive. really questioning whether years of pain with recovery is worth it, and i can't believe i am saying that! huge question: would stem cell injection start healing which might also go thru all the pain of re-growth, re-connecting or healing? it has been an extremely painful journey, (forgot to mention major focus on natural supplements for body to heal in recent years) and would this happen to everyone? but this is spontaneous recovery of asia a with beginning signs probably 2 years post injury, and seems to be no plateaus or stopping now, why should there be, on way to complete recovery.
    limplaura,

    I don't know whether laura is your name or your daughter's name but I love the name. Why? It indicates a temporary condition without all the baggage that comes with spinal cord injury. If you had used the name paralyzedlaura, it would have been hard to oversome. Limp is a temporary state.

    Regarding recovery, it occurs in many people with spinal cord injury, even those with ASIA A injuries. This statement in itself is bitter and painful to many people who are spinal-injured and did not recover, because they ask themselves why they are the ones who remain paralyzed while others recover. A vast majority (>90%) of people with "incomplete" spinal cord injuries recover substantial function and a small minority (<20%) of people with "complete" spinal cord injuries recover walking and other functions that one might associate with "recovery". Over 60% of people with spinal cord injuries recover from spinal cord injury with some residual deficits but able to carry on acts of daily living (ADL) without aid. Our goal is of course to ensure that 100% of people with spinal cord injury would do the same.

    In my experience, about 20% of people with so-called "complete" spinal cord injury eventually become "incomplete" spinal cord injury, defined by the completely arbitrary criterion of anal sensation or sphincter contraction. I feel able to criticize this criterion as arbitrary because I was the one who proposed this criterion for "complete" spinal cord injury in 1991. At that time, I was co-chairing the committee of the American Spinal Injury Association (ASIA) with John Ditunno. I felt that clinicians would not be held back by this criteria if they saw that somebody recover anal sensation and sphincter contraction.

    At about 2 years after his injury, Christopher Reeve told me that he was feeling anal sensation. In the ensuing months, he found that he had sensation over 3/4 of his body and was able to move certain parts of his body. None of the movements were particularly useful to him but they represented a significant advance over his previous state which was no feeling and no movement. In my opinion, the presence of recovery is not the same as early presence of sensory or motor function. But, it is indicative of progress and need to therapies that regenerate the spinal cord.

    The spinal cord is constantly trying to recover. The amazing thing is that it often succeeds. A majority of people that I know with spinal cord injury have found that they continue to recover patches of sensation or movements that they did not know that they had. One of the problems is that most such recoveries are poo-pooed by doctors. On the other hand, most people with spinal cord injury are already accustomed to such negative views from their doctors. I believe that the spinal cord is constantly trying to regenerate, remyelinate, and restore function, as long as the person is living. That is why I think that therapies of chronic spinal cord injury will succeed.

    Wise.

  7. #17
    Junior Member
    Join Date
    Apr 2002
    Location
    westlake village, California
    Posts
    24

    hope for recovery

    thank you Wise for your personal response. as we attended your Rutgers Open House while Laura was still an impatient at Kessler, (with the halo still on I believe), you are the reason for her recovery progress. You dispensed calm, hope and wisdom. without hope, there is no attempt for recovery. I (the mother) am extremely stubborn and independent, and fight intellectually with almost every traditional doctor we have ever encountered. they range from practically condescending tolerance to outright denial of any progress, despite evidence before them. Even though there is a significant delay in the feeling arriving at the brain from the new area being tested with a q-tip at first, some doctors rush thru testing different parts on the body to "prove" she doesn't feel the new area of sensation. You fight for us, and not against us. I therefore fought against her muscle rigidity and atrophy from the beginning, and also learned non-use. Without hope, you don't try, and fall victim to the consequent reality of self-fufillment for sure. Despite the pain, I am grateful for her continued healing, and feel terrible for those who fight for healing without progress. All sensation recovery seems a mixed blessing. She never felt the deep sacral pressure sore, but now she would have. Without sensation, you are not aware of the danger while your body is being injured. The first return of menstural cramps? almost funny. Now feeling when your butt needs a change of positiion?... a good thing. The break we had was that the spasms were not painful, so it was no baclofen so the muscles could remain active. Now, violent lower back spasms are painful, and we sometimes require baclofen. The pain is constant and pelvic area and below - the areas where sensation has not completely returned (altho feels temp and pressure in the shower on legs). Rubbing heightens the constant agitated nerve sensation. Everything is always changing... but very slowly and painfully.

  8. #18
    Lorraine, welcome. I hope you or your loved one got a good snowflake!

    - K
    C5 Burst Fracture - Motorcycle - June 21st, 2009 - Father's Day.
    http://sci.rutgers.edu/forum/showthread.php?t=124135

  9. #19
    Quote Originally Posted by Khatsalano View Post
    Lorraine, welcome. I hope you or your loved one got a good snowflake!

    - K
    Lorraine passed away almost a year ago. She lived comfortably at home, met with success with a phrenic pacer and had many friends who loved her. I think Lorraine lived her life with an SCI with great dignity and courage.
    Every day I wake up is a good one

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