Editorial Comment
Dec 2006
Training in vascular medicine for vascular surgeons-what is it and how will we accomplish it?Plummer D, Macsata R, Sidawy AN. VA Medical Center, Washington Hospital Center, and Georgetown University Medical Center, Washington, DC.
The goal of vascular surgery training program should be the training of a complete vascular surgeon proficient not only in the management of established peripheral vascular disease but also in the prevention of the atherosclerotic process through management of risk factors.
In addition, vascular surgeons should develop expertise in the treatment of nonatherosclerotic arterial disease, nonoperative management of acute and chronic venous disease, lymphedema, and the treatment of various coagulation disorders. To accomplish these goals, we should establish a comprehensive, patient-centered vascular medicine curriculum and appropriate methods for its implementation.
Seminars in Vascular Surgery
Monday, December 25, 2006
Sunday, December 10, 2006
Lymphedema Risk is Greatly Increased with Boost of Radiation to Axillary Nodes
Lymphedema Risk is Greatly Increased with Boost of Radiation to Axillary Nodes
The significant risk of developing lymphedema may outweigh the benefit of receiving an extra boost of radiation to lymph nodes possibly involved in early-stage breast cancer. That is the conclusion of a study presented at the Annual Meeting of the American Society for Therapeutic Radiology and Oncology in Philadelphia.
Lymphedema is an uncomfortable swelling of a limb caused by a build-up of lymphatic fluid. This occurs when the lymph vessels are damaged and/or nodes are removed. The disruption of lymphatic flow prevents the proper drainage, causing a back-up of fluid. About 15-20% of women with breast cancer who have lymph nodes removed during surgery will develop lymphedema.
"We know radiation can increase one's risk of developing lymphedema, so it's important to determine whether the radiation technique or dose contributes," explained Shelly B. Hayes, M.D., a resident in the radiation oncology department at Fox Chase Cancer Center and lead author of the new study.
Standard therapy for women with early-stage breast cancer calls for radiation following a lumpectomy. The radiation field includes the whole affected breast and some of the lymph nodes under the arm, called the axillary lymph nodes.
Doctors may also irradiate the lymph nodes found in the upper axilla and above the clavicle, depending on the number of nodes removed and the number that test positive for cancerous cells. Sometimes, an additional dose or "boost" of radiation is added to the axillary region.
"The reason we irradiate the lymph node regions is to prevent recurrence of disease in those locations," Hayes said. "When an aggressive lymph-node dissection is performed, the utility of additional radiation is questionable. This is the subject of some debate."
Hayes' study consisted of 2,581 women with early-stage breast cancer treated at Fox Chase Cancer Center with lumpectomy, axillary-node dissection and radiation between 1970 and 2005. A total of 2,174 patients (84%) were treated with radiation to the breast alone, 221patients (8.6%) were treated to the breast and supraclavicular lymph nodes while 184 patients (7.1%) received an additional boost of radiation to the axillary nodes. The median follow-up was 81 months.
"The most striking result we found involved women who had more than four positive lymph nodes," explained Hayes. "They were four times more likely to develop lymphedema when treated with a boost, despite similar risks of nodal recurrences.
"Given the increased risk of lymphedema and the lack of evidence supporting improvements in nodal recurrences from the boost, we should carefully consider these results before delivering a boost to our patients," Hayes concluded.
SOURCES: 48th Annual Meeting of the American Society for Therapeutic Radiology and Oncology, November 8, 2006, Philadelphia, PA Fox Chase Cancer Center
The significant risk of developing lymphedema may outweigh the benefit of receiving an extra boost of radiation to lymph nodes possibly involved in early-stage breast cancer. That is the conclusion of a study presented at the Annual Meeting of the American Society for Therapeutic Radiology and Oncology in Philadelphia.
Lymphedema is an uncomfortable swelling of a limb caused by a build-up of lymphatic fluid. This occurs when the lymph vessels are damaged and/or nodes are removed. The disruption of lymphatic flow prevents the proper drainage, causing a back-up of fluid. About 15-20% of women with breast cancer who have lymph nodes removed during surgery will develop lymphedema.
"We know radiation can increase one's risk of developing lymphedema, so it's important to determine whether the radiation technique or dose contributes," explained Shelly B. Hayes, M.D., a resident in the radiation oncology department at Fox Chase Cancer Center and lead author of the new study.
Standard therapy for women with early-stage breast cancer calls for radiation following a lumpectomy. The radiation field includes the whole affected breast and some of the lymph nodes under the arm, called the axillary lymph nodes.
Doctors may also irradiate the lymph nodes found in the upper axilla and above the clavicle, depending on the number of nodes removed and the number that test positive for cancerous cells. Sometimes, an additional dose or "boost" of radiation is added to the axillary region.
"The reason we irradiate the lymph node regions is to prevent recurrence of disease in those locations," Hayes said. "When an aggressive lymph-node dissection is performed, the utility of additional radiation is questionable. This is the subject of some debate."
Hayes' study consisted of 2,581 women with early-stage breast cancer treated at Fox Chase Cancer Center with lumpectomy, axillary-node dissection and radiation between 1970 and 2005. A total of 2,174 patients (84%) were treated with radiation to the breast alone, 221patients (8.6%) were treated to the breast and supraclavicular lymph nodes while 184 patients (7.1%) received an additional boost of radiation to the axillary nodes. The median follow-up was 81 months.
"The most striking result we found involved women who had more than four positive lymph nodes," explained Hayes. "They were four times more likely to develop lymphedema when treated with a boost, despite similar risks of nodal recurrences.
"Given the increased risk of lymphedema and the lack of evidence supporting improvements in nodal recurrences from the boost, we should carefully consider these results before delivering a boost to our patients," Hayes concluded.
SOURCES: 48th Annual Meeting of the American Society for Therapeutic Radiology and Oncology, November 8, 2006, Philadelphia, PA Fox Chase Cancer Center
Monday, December 04, 2006
Lymphedema and Yellow Nail Syndrome
Lymphedema and Yellow Nail Syndrome
Ebrahim Razi MDDermatology Online Journal 12 (2): 15 Section of Internal Medicine, Kashan University of Medical Sciences, Kashan, Iran. ebrahimrazi@yahoo.com
Abstract
A 70-year-old woman with yellow nail syndrome and right-sided pleural effusion, lower extremity edema, and hypoalbuminemia was followed for 18 months. She reported an 8-year history of asthma. She had four children (3 boys and 1 girl). Dystrophy, changes in color and shape of nails both hands and foot, along with lower extremity edema was observed in the daughter and two of her sons. One son had asthma. The patient reported that her grandmother had similar nail abnormality and lower extremity edema. Other family members and patient's grandchildren were healthy. This report demonstrates a case of familial yellow-nail syndrome.
Introduction
The yellow nail syndrome (YNS), first described in 1964 by Samman and White[1], is characterized by the presence of dystrophic, thickened, and slow-growing yellow nails in association with peripheral edema. It is a rare condition with fewer than 100 reported cases.
The manifestations of YNS have been extended to include pleural effusion [2, 3], bronchial hyperresponsiveness [4], bronchiectasis [5], chronic bronchitis, chronic sinusitis, and lymphedema (most frequently of the lower extremity). Most cases reported are idiopathic, however the syndrome has been described in association with malignancy [6]. Familial occurrence of YNS also has been reported (5).
We present a patient with familial YNS associated with pulmonary findings, lymphedema, and hypoproteinemia in a 70-year-old woman; manifestations of this syndrome were also present in her three siblings.
Case report
A 70-year-old woman was admitted for evaluation of a right-sided pleural effusion. She had a history of dyspnea and asthma for 8 years and was treated with an anti-asthmatic drug. On examination her temperature was 36.5°C, blood pressure 120/70 mm, respiratory rate 28 breaths/minute, and pulse 93 beats/minute. Examination of the chest revealed dullness on percussion, with decreased breath sounds in the lower half of the right lung, bilateral expiratory wheezing, and pitting edema of the legs. All 20 nails showed a yellowish discoloration with thickening of the nail plates and disappearance of the cuticles (Fig. 1). Nail growth was almost totally arrested.
Laboratory studies showed the following: WBC of 15,600/ml (80 % neutrophils, 18 % lymphocytes, 2 % monocytes); a hemoglobin level of 15.2 g/dl, and a platelet count of 380,000/ml. The total protein level was 5.5 g/dl (normal: 6.4 to 8.4 g/dl); asparate aminotransferase, 35 U/L (normal: 0 to 33 U/L); alanine aminotransferase and alkaline phosphatase was normal. The erythrocyte sedimentation rate was 3 mm/hour. Urinalysis showed a pH of 8, negative for albumin, and no cells. Chest X-ray showed a right sided pleural effusion (Fig. 2). A thoracentesis yielded yellow fluid; with a lactate dehydrogenase level of 315 U/L (normal 100-500 U/L); protein content was 2.2 g/dl; glucose content was 79 mg/dl; pleural fluid total cell was 3780/ml (white blood cell 3680/ml with neutrophils 94 % and lymphocytes 6 %). Concomitant serum lactate dehydrogenase was 341 U/dl. Cytologic examination did not reveal malignant cells, and the results of acid fast bacillus study and culture were negative. The PPD test was negative. Arterial blood gas value on room air revealed a pH of 7.36, a carbon dioxide partial pressure of 47.6 mm Hg, and oxygen partial pressure of 64.1 mm Hg and HCO3 26.4 mmol/l. Computed tomographic (CT) scan of the chest demonstrated bronchiectasis and fibrotic changes in anterior segment of the right upper lobe (Fig. 3).
After 18-months followup the patient was hospitalized again, this time with bilateral pleural effusions, worsening of lower extremity edema, and ascites. Treatment with furosemide, intravenous albumin, and low-salt regimen was begun. The pedal edema subsided and the patient was discharged. After 3 months her condition deteriorated, and the patient was readmitted because of exacerbation of ascites, extremity edema, and progressive bilateral pleural effusions. Despite treatment for respiratory failure with mechanical ventilation and aspiration of large pleural fluids, the patient died of nosocomial pneumonia and a complication of mechanical ventilation.
The patient had four children (3 boys and 1 girl). She was related to her husband before the marriage (the husband was the son of paternal aunt and she was the daughter of a paternal uncle). The 36-year-old daughter and 33- and 40-year old sons had manifestations of this syndrome. They were noted to have changes in color and shape of fingernails and toenails (Figs. 4-6). The 33-year-old son also had asthma. The patient reported similar nail abnormalities and lower extremity edema in her grandmother. Other family members and the patient's grandchildren were healthy.
Comments
It appear that familial YNS is present in grandmother and three children of patient. Two siblings have been described who manifested signs of both the syndrome and immunologic deficiency; however, this familial occurrence is unique among the case reported to date [5].
The syndrome of yellow nails and lymphedema was first described by Samman and White in 1964 [1]. Later, Emerson[2] added pleural effusion as a frequent feature of the disease. The diagnosis is based on the characteristic triad of yellow nails, lymphedema, and respiratory involvement. However, these three alterations are simultaneously present in only 27 percent of cases [7]. In 1986 Nordkild and associates reviewed the reports of the 97 patients described in the literature [6]. The median age at onset was 40 years, however, the age of onset varies widely; for example, lymphedema may be present at birth or become manifest at the age 65. Yellow nails were present in 89 percent of the patients, 80 percent had lymphedema of varying severity, and 36 percent had pleural effusion. In 29 percent of patients, the initial symptom was related to pleural effusion.
Patients often give a history of recurrent attacks of bronchitis and may have chronic sinusitis, bronchiectasis, and recurrent pneumonia. Of the twelve patients reported from the Mayo Clinic, eight had recurrent pleural effusion and five had bronchiectasis; in this series, the first manifestation of the syndrome was either lymphedema or yellow nails, pleural effusion appearing somewhat later in all cases. The pleural effusion is usually exudative, either idiopathic or secondary to infection or chylothorax. The pleural fluid characteristically contains a high percentage of lymphocytes [8].
The pathogenesis of the bronchiectasis is unknown, although it is frequently associated with sinusitis; in one patient the bronchiectasis was confined to the upper lobes [9]. The YNS has been reported in association with thyroid disease [6], hypogammaglobulinemia [6], nephrotic syndrome [6], protein-losing enteropathy [10], obstructive sleep apnea [11], and xanthogranulomatous pyelonephritis [12].
Many nail alterations have been described in association with YNS as follows: thickening, hardening, longitudinal over-curvature, total or distal yellow discoloration, loss of cuticle, transverse ridging associated with variations in the ungual growth rate, and onycholysis that may lead to shedding. Erythema and edema of the proximal nail fold or chronic paronychia also may be present [7]. The nail growth is slow (0.1-0.25 mm/week, normal 0.5-2 mm/week) [13]. Dermatophytic superinfection had been reported rarely [14].
The pathogenesis of nail abnormalities remains unknown. Lymphatic vessel alterations may play a role in some cases. DeCoste et al. hypothesized that primary sclerosis of the stroma could lead to lymphatic obstruction [15]. The slower ungual growth may be a result of slow lymphatic flow. In 7-30 percent of cases, there is a spontaneous partial or total remission [1, 16]. But relapse often occurs. Nail improvement is often concomitant with improvement of the respiratory pathology [4, 15]. Defective lymph drainage and lymphedema is attributed to hypoplasia (sometimes atresia) of the lymphatics, defects that can be demonstrated by peripheral lymphangiography. Impaired lymphatic function has been considered an underlying abnormality in YNS, and perhaps even the primary problem. In YNS, edema results from and imbalance between capillary filtration and lymph flow.
Lymphedema, by definition, is edema due to a reduction in lymph flow. Many chronic edema are of mixed etiology, i.e., attributed to impaired lymph flow in the face of raised filtration rate. The reversibility of the edema suggests that any lymphatic insufficiency is functional and not structural. The widespread nature of fluid accumulation in YNS, including peripheral edema, pleural effusions and ascites, also suggest a functional rather than an anatomic disorder. There is no evidence to suggest that other factors influencing edema, such as salt or water imbalance, or hapoproteinemia, play a part in the genesis of YNS. Although lymphedema may be associated with YNS, the reversible nature of the edema excludes a primary structural abnormality in YNS and suggest that lymphatic involvement is secondary, and probably functional, in nature [17].
An inflammatory component, which could alter both blood flow and capillary permeability has not been excluded in the pathogenesis of the edema in the YNS. Interestingly, topical vitamin E, which has been used to treat nail in YNS, has and anti-inflammatory action [13, 16].
In summary, this report shows a case of familial YNS with implications of genetic factors in the pathogenesis of the disease. On the basis of this observation, it appears essential that family history be considered in the characterization of the disease.
References
1. Samman PD, White WF. The 'Yellow nail' syndrome. Br J Dermatol. 1964 Apr;76:153-7. PubMed
2. Emerson PA. Yellow nails, lymphoedema, and pleural effusions. Thorax. 1966 May;21(3):247-53. PubMed
3. Dilley JJ, kierland RR, Randall RV, Shick RM. Primary lymphedema associated with yellow nails and pleural effusions. JAMA. 1968 May 20;204(8):670-3. PubMed
4. Luyten C, Andre J, Walraevens C, De Doncker P. Yellow nail syndrome and onychomycosis. Experience with itraconazole pulse therapy combined with vitamin E. Dermatology. 1996;192(4):406-8. PubMed
5. Hiller E, Rosenow EC, Olsen AM. Pulmonary manifestations of the yellow nail syndrome. Chest. 1972 May;61(5):452-8. PubMed
6. Nordkild P, Kromann - Andersen H, Struve - Chirstensen E. Yellow nail syndrome--the triad of yellow nails, lymphedema and pleural effusions. A review of the literature and a case report. Acta Med Scand. 1986;219(2):221-7. PubMed
7. Tosti A, Baran R, Dawber RPR: The nail in systemic diseases and drug - induced changes: in Baran R, Dawber RPR (eds): Diseases of the Nails and Their Managements, ed 2. Oxford, Blackwell, 1994, PP 175-261.
8. Solal - Celigny P, Cormier Y, Fournier M. The yellow nail syndrome .Llight and electron microscopic aspects of the pleura. Arch pathol Lab Med 1983; 107: 183-85. PubMed
9. McNicholas WT, Quigley C, FitzGerald MX: Upper lobe bronchiectasis in the yellow nail syndrome: report of a case. Ir J Med Sci. 1984 Nov;153(11):394-5. PubMed
10. Battaglia A, Di Ricco G, Mariani G, Giuntini C. Pleural effusion and recurrent broncho-pneumonia with lymphedema, yellow nails and protein-losing enteropathy. Eur J Respir Dis. 1985 Jan;66(1):65-9. PubMed
11. Knuckles ML, Hodge SJ, Roy TM, Snider HL. Yellow nail syndrome in association with sleep apnea. Int J Dermatol. 1986 Nov;25(9):588-9PubMed
12. Danenberg HD, Eliashar R, Flusser G, Rosenmann E, Chajek-Shault. Yellow nail syndrome and xanthogranulomatous pyelonephritis. Postgrad Med J. 1995 Feb;71(832):110-1. PubMed
13. Williams HC, Buffham R, du Vivier A. Successful use of topical vitamin E solution in the treatment of nail changes in yellow nail syndrome. Arch Dermatol. 1991 Jul;127(7):1023-8. PubMed
14. Venencie PY, Dicken CH. Yellow nail syndrome: report of five cases. J Am Acad Dermatol. 1984 Feb;10(2 Pt 1):187-92. PubMed
15. DeCoste SD, Imber MJ, Baden HP. Yellow nail syndrome. J Am Acad Dermatol. 1990 Apr;22(4):608-11. PubMed
16. Norton L. Further observation on the yellow nail syndrome with therapeutic effects of oral alpha - tocopherol. Cutis 1985 Dec; 36(6): 457-62. PubMed
17. Bull RH, Fenton DA, Mortimer PS. Lymphatic function in the yellow nail syndrome. Br J Dermatol. 1996 Feb;134(2):307-12. PubMed
© 2006 Dermatology Online Journal
Ebrahim Razi MDDermatology Online Journal 12 (2): 15 Section of Internal Medicine, Kashan University of Medical Sciences, Kashan, Iran. ebrahimrazi@yahoo.com
Abstract
A 70-year-old woman with yellow nail syndrome and right-sided pleural effusion, lower extremity edema, and hypoalbuminemia was followed for 18 months. She reported an 8-year history of asthma. She had four children (3 boys and 1 girl). Dystrophy, changes in color and shape of nails both hands and foot, along with lower extremity edema was observed in the daughter and two of her sons. One son had asthma. The patient reported that her grandmother had similar nail abnormality and lower extremity edema. Other family members and patient's grandchildren were healthy. This report demonstrates a case of familial yellow-nail syndrome.
Introduction
The yellow nail syndrome (YNS), first described in 1964 by Samman and White[1], is characterized by the presence of dystrophic, thickened, and slow-growing yellow nails in association with peripheral edema. It is a rare condition with fewer than 100 reported cases.
The manifestations of YNS have been extended to include pleural effusion [2, 3], bronchial hyperresponsiveness [4], bronchiectasis [5], chronic bronchitis, chronic sinusitis, and lymphedema (most frequently of the lower extremity). Most cases reported are idiopathic, however the syndrome has been described in association with malignancy [6]. Familial occurrence of YNS also has been reported (5).
We present a patient with familial YNS associated with pulmonary findings, lymphedema, and hypoproteinemia in a 70-year-old woman; manifestations of this syndrome were also present in her three siblings.
Case report
A 70-year-old woman was admitted for evaluation of a right-sided pleural effusion. She had a history of dyspnea and asthma for 8 years and was treated with an anti-asthmatic drug. On examination her temperature was 36.5°C, blood pressure 120/70 mm, respiratory rate 28 breaths/minute, and pulse 93 beats/minute. Examination of the chest revealed dullness on percussion, with decreased breath sounds in the lower half of the right lung, bilateral expiratory wheezing, and pitting edema of the legs. All 20 nails showed a yellowish discoloration with thickening of the nail plates and disappearance of the cuticles (Fig. 1). Nail growth was almost totally arrested.
Laboratory studies showed the following: WBC of 15,600/ml (80 % neutrophils, 18 % lymphocytes, 2 % monocytes); a hemoglobin level of 15.2 g/dl, and a platelet count of 380,000/ml. The total protein level was 5.5 g/dl (normal: 6.4 to 8.4 g/dl); asparate aminotransferase, 35 U/L (normal: 0 to 33 U/L); alanine aminotransferase and alkaline phosphatase was normal. The erythrocyte sedimentation rate was 3 mm/hour. Urinalysis showed a pH of 8, negative for albumin, and no cells. Chest X-ray showed a right sided pleural effusion (Fig. 2). A thoracentesis yielded yellow fluid; with a lactate dehydrogenase level of 315 U/L (normal 100-500 U/L); protein content was 2.2 g/dl; glucose content was 79 mg/dl; pleural fluid total cell was 3780/ml (white blood cell 3680/ml with neutrophils 94 % and lymphocytes 6 %). Concomitant serum lactate dehydrogenase was 341 U/dl. Cytologic examination did not reveal malignant cells, and the results of acid fast bacillus study and culture were negative. The PPD test was negative. Arterial blood gas value on room air revealed a pH of 7.36, a carbon dioxide partial pressure of 47.6 mm Hg, and oxygen partial pressure of 64.1 mm Hg and HCO3 26.4 mmol/l. Computed tomographic (CT) scan of the chest demonstrated bronchiectasis and fibrotic changes in anterior segment of the right upper lobe (Fig. 3).
After 18-months followup the patient was hospitalized again, this time with bilateral pleural effusions, worsening of lower extremity edema, and ascites. Treatment with furosemide, intravenous albumin, and low-salt regimen was begun. The pedal edema subsided and the patient was discharged. After 3 months her condition deteriorated, and the patient was readmitted because of exacerbation of ascites, extremity edema, and progressive bilateral pleural effusions. Despite treatment for respiratory failure with mechanical ventilation and aspiration of large pleural fluids, the patient died of nosocomial pneumonia and a complication of mechanical ventilation.
The patient had four children (3 boys and 1 girl). She was related to her husband before the marriage (the husband was the son of paternal aunt and she was the daughter of a paternal uncle). The 36-year-old daughter and 33- and 40-year old sons had manifestations of this syndrome. They were noted to have changes in color and shape of fingernails and toenails (Figs. 4-6). The 33-year-old son also had asthma. The patient reported similar nail abnormalities and lower extremity edema in her grandmother. Other family members and the patient's grandchildren were healthy.
Comments
It appear that familial YNS is present in grandmother and three children of patient. Two siblings have been described who manifested signs of both the syndrome and immunologic deficiency; however, this familial occurrence is unique among the case reported to date [5].
The syndrome of yellow nails and lymphedema was first described by Samman and White in 1964 [1]. Later, Emerson[2] added pleural effusion as a frequent feature of the disease. The diagnosis is based on the characteristic triad of yellow nails, lymphedema, and respiratory involvement. However, these three alterations are simultaneously present in only 27 percent of cases [7]. In 1986 Nordkild and associates reviewed the reports of the 97 patients described in the literature [6]. The median age at onset was 40 years, however, the age of onset varies widely; for example, lymphedema may be present at birth or become manifest at the age 65. Yellow nails were present in 89 percent of the patients, 80 percent had lymphedema of varying severity, and 36 percent had pleural effusion. In 29 percent of patients, the initial symptom was related to pleural effusion.
Patients often give a history of recurrent attacks of bronchitis and may have chronic sinusitis, bronchiectasis, and recurrent pneumonia. Of the twelve patients reported from the Mayo Clinic, eight had recurrent pleural effusion and five had bronchiectasis; in this series, the first manifestation of the syndrome was either lymphedema or yellow nails, pleural effusion appearing somewhat later in all cases. The pleural effusion is usually exudative, either idiopathic or secondary to infection or chylothorax. The pleural fluid characteristically contains a high percentage of lymphocytes [8].
The pathogenesis of the bronchiectasis is unknown, although it is frequently associated with sinusitis; in one patient the bronchiectasis was confined to the upper lobes [9]. The YNS has been reported in association with thyroid disease [6], hypogammaglobulinemia [6], nephrotic syndrome [6], protein-losing enteropathy [10], obstructive sleep apnea [11], and xanthogranulomatous pyelonephritis [12].
Many nail alterations have been described in association with YNS as follows: thickening, hardening, longitudinal over-curvature, total or distal yellow discoloration, loss of cuticle, transverse ridging associated with variations in the ungual growth rate, and onycholysis that may lead to shedding. Erythema and edema of the proximal nail fold or chronic paronychia also may be present [7]. The nail growth is slow (0.1-0.25 mm/week, normal 0.5-2 mm/week) [13]. Dermatophytic superinfection had been reported rarely [14].
The pathogenesis of nail abnormalities remains unknown. Lymphatic vessel alterations may play a role in some cases. DeCoste et al. hypothesized that primary sclerosis of the stroma could lead to lymphatic obstruction [15]. The slower ungual growth may be a result of slow lymphatic flow. In 7-30 percent of cases, there is a spontaneous partial or total remission [1, 16]. But relapse often occurs. Nail improvement is often concomitant with improvement of the respiratory pathology [4, 15]. Defective lymph drainage and lymphedema is attributed to hypoplasia (sometimes atresia) of the lymphatics, defects that can be demonstrated by peripheral lymphangiography. Impaired lymphatic function has been considered an underlying abnormality in YNS, and perhaps even the primary problem. In YNS, edema results from and imbalance between capillary filtration and lymph flow.
Lymphedema, by definition, is edema due to a reduction in lymph flow. Many chronic edema are of mixed etiology, i.e., attributed to impaired lymph flow in the face of raised filtration rate. The reversibility of the edema suggests that any lymphatic insufficiency is functional and not structural. The widespread nature of fluid accumulation in YNS, including peripheral edema, pleural effusions and ascites, also suggest a functional rather than an anatomic disorder. There is no evidence to suggest that other factors influencing edema, such as salt or water imbalance, or hapoproteinemia, play a part in the genesis of YNS. Although lymphedema may be associated with YNS, the reversible nature of the edema excludes a primary structural abnormality in YNS and suggest that lymphatic involvement is secondary, and probably functional, in nature [17].
An inflammatory component, which could alter both blood flow and capillary permeability has not been excluded in the pathogenesis of the edema in the YNS. Interestingly, topical vitamin E, which has been used to treat nail in YNS, has and anti-inflammatory action [13, 16].
In summary, this report shows a case of familial YNS with implications of genetic factors in the pathogenesis of the disease. On the basis of this observation, it appears essential that family history be considered in the characterization of the disease.
References
1. Samman PD, White WF. The 'Yellow nail' syndrome. Br J Dermatol. 1964 Apr;76:153-7. PubMed
2. Emerson PA. Yellow nails, lymphoedema, and pleural effusions. Thorax. 1966 May;21(3):247-53. PubMed
3. Dilley JJ, kierland RR, Randall RV, Shick RM. Primary lymphedema associated with yellow nails and pleural effusions. JAMA. 1968 May 20;204(8):670-3. PubMed
4. Luyten C, Andre J, Walraevens C, De Doncker P. Yellow nail syndrome and onychomycosis. Experience with itraconazole pulse therapy combined with vitamin E. Dermatology. 1996;192(4):406-8. PubMed
5. Hiller E, Rosenow EC, Olsen AM. Pulmonary manifestations of the yellow nail syndrome. Chest. 1972 May;61(5):452-8. PubMed
6. Nordkild P, Kromann - Andersen H, Struve - Chirstensen E. Yellow nail syndrome--the triad of yellow nails, lymphedema and pleural effusions. A review of the literature and a case report. Acta Med Scand. 1986;219(2):221-7. PubMed
7. Tosti A, Baran R, Dawber RPR: The nail in systemic diseases and drug - induced changes: in Baran R, Dawber RPR (eds): Diseases of the Nails and Their Managements, ed 2. Oxford, Blackwell, 1994, PP 175-261.
8. Solal - Celigny P, Cormier Y, Fournier M. The yellow nail syndrome .Llight and electron microscopic aspects of the pleura. Arch pathol Lab Med 1983; 107: 183-85. PubMed
9. McNicholas WT, Quigley C, FitzGerald MX: Upper lobe bronchiectasis in the yellow nail syndrome: report of a case. Ir J Med Sci. 1984 Nov;153(11):394-5. PubMed
10. Battaglia A, Di Ricco G, Mariani G, Giuntini C. Pleural effusion and recurrent broncho-pneumonia with lymphedema, yellow nails and protein-losing enteropathy. Eur J Respir Dis. 1985 Jan;66(1):65-9. PubMed
11. Knuckles ML, Hodge SJ, Roy TM, Snider HL. Yellow nail syndrome in association with sleep apnea. Int J Dermatol. 1986 Nov;25(9):588-9PubMed
12. Danenberg HD, Eliashar R, Flusser G, Rosenmann E, Chajek-Shault. Yellow nail syndrome and xanthogranulomatous pyelonephritis. Postgrad Med J. 1995 Feb;71(832):110-1. PubMed
13. Williams HC, Buffham R, du Vivier A. Successful use of topical vitamin E solution in the treatment of nail changes in yellow nail syndrome. Arch Dermatol. 1991 Jul;127(7):1023-8. PubMed
14. Venencie PY, Dicken CH. Yellow nail syndrome: report of five cases. J Am Acad Dermatol. 1984 Feb;10(2 Pt 1):187-92. PubMed
15. DeCoste SD, Imber MJ, Baden HP. Yellow nail syndrome. J Am Acad Dermatol. 1990 Apr;22(4):608-11. PubMed
16. Norton L. Further observation on the yellow nail syndrome with therapeutic effects of oral alpha - tocopherol. Cutis 1985 Dec; 36(6): 457-62. PubMed
17. Bull RH, Fenton DA, Mortimer PS. Lymphatic function in the yellow nail syndrome. Br J Dermatol. 1996 Feb;134(2):307-12. PubMed
© 2006 Dermatology Online Journal
Wednesday, November 29, 2006
Reducing the symptoms of lymphoedema: is there a role for aromatherapy?
Reducing the symptoms of lymphoedema: is there a role for aromatherapy?
April 2006
Barclay J,
Vestey J,
Lambert A,
Balmer C.
Dorset Cancer Centre, Poole Hospital, Longfleet Road, Poole BH15 2JB, UK.
Lymphoedema is a chronic and debilitating condition caused by lymphatic insufficiency, which may have serious physical, social and psychological implications for the patient. It is usually managed by a combination of strategies aimed at protecting and decongesting the oedematous limb(s) and stimulating the development of supplementary lymphatic pathways to control swelling in the long-term. However, it is not known which therapies are the most effective.
Anecdotally, the addition of aromatherapy oils to massage cream may have a positive effect on symptom relief in people with cancer, although evidence is again lacking. This paper describes a randomized trial of self-massage and skin care using a cream containing aromatherapy oils versus self-massage and skin care using a cream without aromatherapy oils on objective limb volume measurements and symptom relief as measured by the Measure Yourself Medical Outcome Profile 2 (MYMOP2) in a sample of people with lymphoedema.
Results indicate that self-massage and skin care significantly improved patient-identified symptom relief and wellbeing for this sample. It also slightly, but not significantly reduced limb volume. However, aromatherapy oils, carefully chosen on the basis that they should benefit this group, did not appear to influence any improvement in these measures.
PMID: 16563861 [PubMed - indexed for MEDLINE]
Abstract
April 2006
Barclay J,
Vestey J,
Lambert A,
Balmer C.
Dorset Cancer Centre, Poole Hospital, Longfleet Road, Poole BH15 2JB, UK.
Lymphoedema is a chronic and debilitating condition caused by lymphatic insufficiency, which may have serious physical, social and psychological implications for the patient. It is usually managed by a combination of strategies aimed at protecting and decongesting the oedematous limb(s) and stimulating the development of supplementary lymphatic pathways to control swelling in the long-term. However, it is not known which therapies are the most effective.
Anecdotally, the addition of aromatherapy oils to massage cream may have a positive effect on symptom relief in people with cancer, although evidence is again lacking. This paper describes a randomized trial of self-massage and skin care using a cream containing aromatherapy oils versus self-massage and skin care using a cream without aromatherapy oils on objective limb volume measurements and symptom relief as measured by the Measure Yourself Medical Outcome Profile 2 (MYMOP2) in a sample of people with lymphoedema.
Results indicate that self-massage and skin care significantly improved patient-identified symptom relief and wellbeing for this sample. It also slightly, but not significantly reduced limb volume. However, aromatherapy oils, carefully chosen on the basis that they should benefit this group, did not appear to influence any improvement in these measures.
PMID: 16563861 [PubMed - indexed for MEDLINE]
Abstract
Saturday, November 11, 2006
Access to Physical Medicine and Rehabilitation Services Improvement Act of 2006 , S.3963
Access to Physical Medicine and Rehabilitation Services Improvement Act of 2006 , S.3963
* * * * * *
From: Pat O’Connor
Lymphedema People
* * * * * *
Dear Fellow Lymphedema Family Members:
As you may be aware of last year, the Center for Medicare and Medicaid Services (CMS) changed the rules for the reimbursement of decongestive therapy for lymphedema patients. What has happened since this ruling has been a loss of approximately one-third of the available treatment providers for lymphedema.
Here is a brief background:
On May 6, 2005, the Office for Medicare and Medicaid Services in the U.S. Department of Health and Human Services issued a new rule that limits reimbursement for "therapy services" to certain medical providers, when the therapy is billed "incident to" the services of a physician or nonphysician practitioner. The providers include those trained as physical therapists (PTs), occupational therapists (OTs), and speech-language pathologists. In addition, when state and local law permit, therapy services can be provided by physicians, physician assistants, clinical nurse specialists, and nurse practitioners.
Among the provider groups not included in this list are massage therapists. This means that doctors will not be able to continue billing for therapy services when they are provided by massage therapists. For many patients, this would not matter. But for lymphedema sufferers, it matters a great deal. "This ruling will be absolutely devastating for our patients," said Cheri Hoskins, owner of a lymphedema practice and Chair of Lymphedema Stakeholders. Because of the unusual way lymphedema therapy developed in the United States, manual lymphedema therapy is provided by a wide range of specialists, including doctors, nurses, PTs, OTs, physician assistants, and massage therapists (MTs). An estimated one-third to one-half of all lymphedema therapists nationwide are massage therapists, and in many parts of the country, the only lymphedema therapists within driving distance for patients are massage therapists. In those areas, the new Medicare rule means that entire lymphedema practices will close. Already, two practices have been forced to close as physicians have anticipated the effect of the new rule - leaving literally hundreds of patients stranded without treatment. And other practices are making plans to close because they estimate they will only be able to afford to stay in business for a few months.
Who Will Be Affected by the Rule?
All lymphedema patients -- not just those receiving Medicare benefits -- will be hurt. For patients, "the inevitable result of this rule will be a significant reduction in the number of lymphedema therapists, and therefore longer waiting periods to see the therapists who remain, less time available for treatment, and higher prices,"
Click on this link for a complete copy of his proposed legislation***
Now that we have a senator who is willing to sponsor this, it is now up to us to decide our own fate. It is often said that bad things happen because good people do nothing.
The good people of our lymphedema family can do something. It is imperative that we let our congressional respresentatives know our position and support for full access to the very treatment that our health, well-being and even lives depend on.
Here are samples letters for you to send. Modify it if you need to, but please take the time to act on your own behalf. Also included is a doctor’s support letter that you can take to your physicians.
SAMPLE ONE: LYMPHEDEMA PATIENT LETTER
Re: Please support the Access to Physical Medicine and Rehabilitation Services Improvement Act, S.3963
Dear Senator or Representative INSERT NAME
As your constituent, I am asking you to co-sponsor the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963). This legislation is important because improves access to life-saving physical medicine and rehabilitation services for millions of Medicare beneficiaries. This bill does not expand services and will result in both short- and long-term savings for Medicare.
I am a lymphedema patient, and my ability to find qualified health care professionals to treat my condition has been severely restricted by a rule instituted by the Centers for Medicare and Medicaid Services (CMS) in June 2005. Congress did not authorize the “therapy-incident to” rule, which resulted in the loss of one-third of the educationally and clinically qualified providers to lymphedema patients. These specially certified massage therapists are supervised in the physician’s office by the physician and perform services currently approved by Medicare. However, Medicare no longer allows them to be reimbursed—an unauthorized change to a seven-year policy. This reimbursement policy is now trickling down into the commercial insurance payment system, which puts even more stress on the health care system.
Between 3 and 5 million Americans are afflicted with lymphedema. An estimated one-third (33 percent) of breast cancer survivors are affected because of surgery and radiation. For others, it is hereditary. There are many types of lymphedema, but it is when a limb—generally and arm or leg—swells uncontrollably because of damage to the lymph system. Lymphedema can be treated effectively but there is no cure. The savings to Medicare are significant when it is caught early and treated by qualified, certified therapists.
S.3963 will do three things:
1. Improve access to quality health care for Medicare beneficiaries
2. Reinstate physician choice of which qualified health care professionals they can hire to perform this treatment in their offices.
3. Provide cost savings to the Medicare program for services that are already covered.
Without this legislation, the power of choice for quality, affordable, accessible medical care will be in the hands of Medicare and insurance companies, not in the hands of the physicians and patients where it belongs.
Please contact me for more details or our Washington DC representative Bill Finerfrock at 202.544.1880 or bf@capitolassociates.com.
For more information on lymphedema, go to Lymphedema People or The National Lymphedema Network .
Sincerely,
YOUR NAME, COMPLETE ADDRESS, PHONE AND EMAIL
......
SAMPLE TWO:
We the members of the Lymphedema People national network of websites and support groups for lymphatic medical conditions support without qualification the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963) introduced by Sen. Craig Thomas of Wyoming. We thank Senator Thomas for his leadership role in introducing this legislation, and gratefully acknowledge this support in providing medical care to Medicare beneficiaries with lymphedema.
We implore Congress to work in a bi-partisan fashion to quickly pass this legislation and:
· Restore patient access to high quality, medically necessary health care services
· Restore the ability of physicians to practice medicine and hire and supervise the most qualified health care professionals
· Save money for the Medicare system by passing and implementing this law
Lymphedema People is a community created for, and by, people with the medical condition of lymphedema. Our mission is to:
· To provide lymphedema information to the people it affects
· To inform them about the condition, it's causes, complications, and treatments
· To share the knowledge that life does not end with lymphedema, there is hope.
To share a life with lymphedema that is rich, fulfilling and very rewarding.
We have shared now our message of this hope with more then 1,000,000 visitors to our main website.
Sincerely,
OUR NAME, COMPLETE ADDRESS, PHONE AND EMAIL
......
SAMPLE LETTER THREE (Physicians)
Re: Please Support the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963) Dear
I am a physician who works with lymphedema patients. Because of a capricious and ill-advised rule made by the Centers for Medicare and Medicaid Services (CMS) in 2005, I can no longer employ the most qualified, most effective health care professionals to provide treatment to my lymphedema patients. With the “therapy-incident to” rule, physicians like me can no longer receive reimbursement for the complete decongestive therapy (CDT) provided by specialty certified massage therapists. CMS restricted who can provide ‘therapy-incident to” without Congressional approval and is applying standards that don’t make sense in the physical medicine and rehabilitation field of medicine.
The result of this rule is devastating to my patients, many of whom are breast cancer survivors. In fact, at least 60 percent of women who have had a mastectomy will develop lymphedema. Other patients develop lymphedema because it is hereditary. In all cases it is treatable and can prevent death, but it is an incurable, devastating disease.
S.3963 will do three things:
1. Restore and improve patient access to the most qualified health care professionals.
2. Will restore physician choice of who they can hire and supervise to perform CDT and other treatments, and be reimbursed for those services. Note that this is not an expansion of Medicare services.
3. It will save Medicare an estimated 38 percent on physical medicine and rehabilitation services provided in physician offices, according to two different MedPAC reports.
Failure to provide lymphedema therapy treatment under Medicare Part B will result in net increased Medicare Part A program costs of approximately $120 Million annually, according to the Coalition to Preserve Patient Access to Physical Medicine and Rehabilitation. The other therapists that are included in S.3963 will also save money for Medicare and will not add any new services.
CMS bureaucrats should not be practicing medicine. Please cosponsor S.3963.
You can contact me for more details or our Washington DC representative Bill Finerfrock at 202.544.1880 or bf@capitolassociates.com. For more information on lymphedema, go to Lymphedema People or National Lymphedema Network .
Sincerely,
name, full address, Phone, email
SAMPLE FOUR Physician Letter
I am a PHYSICIAN OR OTHER HEALTH CARE PROFESSIONAL and I rely on and work with certified athletic trainers. The 30,000 athletic trainers in the U.S. help me provide high quality, medically necessary health care services to an estimated 16 million patients each year. They are an important part of the health care system and my medical team. Athletic trainers help ensure patient access to quality health care in this time of workforce shortages.
My ability to work with athletic trainers has been impeded by an unfair rule made by the Center for Medicare and Medicaid Services (CMS) in July 2005. The CMS rule limits the ability of physicians to choose who can provide therapy services to Medicare beneficiaries. This ill conceived policy is causing serious problems with access to quality health care. It affects athletic trainers, lymphedema therapists, low-vision therapists and many other certified health care professionals.
By cosponsoring S.3963, the Access to Physical Medicine and Rehabilitation Services Improvement Act, and pressing for its speedy vote and passage you can ensure a higher quality of health care. S.3963 will restore the ability of physicians and patients to have access to the most qualified health care professionals.
Athletic trainers are nationally certified health care providers with proven clinical skills. Please regard this postcard as a statement supporting athletic trainers. I urge you to cosponsor S.3963 and press for a quick vote and passage to correct this harmful federal policy that is trickling down to private insurance companies. Without this legislation, the power of choice for medical care will be in the hands of insurance companies and bureaucrats, not in the hands of the physicians and patients where it belongs. Who do you want making your health care decisions?
Sincerely,
name, full address, Phone, email
==========
Information and Resources:
Lymphedema People
* * * * * *
From: Pat O’Connor
Lymphedema People
* * * * * *
Dear Fellow Lymphedema Family Members:
As you may be aware of last year, the Center for Medicare and Medicaid Services (CMS) changed the rules for the reimbursement of decongestive therapy for lymphedema patients. What has happened since this ruling has been a loss of approximately one-third of the available treatment providers for lymphedema.
Here is a brief background:
On May 6, 2005, the Office for Medicare and Medicaid Services in the U.S. Department of Health and Human Services issued a new rule that limits reimbursement for "therapy services" to certain medical providers, when the therapy is billed "incident to" the services of a physician or nonphysician practitioner. The providers include those trained as physical therapists (PTs), occupational therapists (OTs), and speech-language pathologists. In addition, when state and local law permit, therapy services can be provided by physicians, physician assistants, clinical nurse specialists, and nurse practitioners.
Among the provider groups not included in this list are massage therapists. This means that doctors will not be able to continue billing for therapy services when they are provided by massage therapists. For many patients, this would not matter. But for lymphedema sufferers, it matters a great deal. "This ruling will be absolutely devastating for our patients," said Cheri Hoskins, owner of a lymphedema practice and Chair of Lymphedema Stakeholders. Because of the unusual way lymphedema therapy developed in the United States, manual lymphedema therapy is provided by a wide range of specialists, including doctors, nurses, PTs, OTs, physician assistants, and massage therapists (MTs). An estimated one-third to one-half of all lymphedema therapists nationwide are massage therapists, and in many parts of the country, the only lymphedema therapists within driving distance for patients are massage therapists. In those areas, the new Medicare rule means that entire lymphedema practices will close. Already, two practices have been forced to close as physicians have anticipated the effect of the new rule - leaving literally hundreds of patients stranded without treatment. And other practices are making plans to close because they estimate they will only be able to afford to stay in business for a few months.
Who Will Be Affected by the Rule?
All lymphedema patients -- not just those receiving Medicare benefits -- will be hurt. For patients, "the inevitable result of this rule will be a significant reduction in the number of lymphedema therapists, and therefore longer waiting periods to see the therapists who remain, less time available for treatment, and higher prices,"
Click on this link for a complete copy of his proposed legislation***
Now that we have a senator who is willing to sponsor this, it is now up to us to decide our own fate. It is often said that bad things happen because good people do nothing.
The good people of our lymphedema family can do something. It is imperative that we let our congressional respresentatives know our position and support for full access to the very treatment that our health, well-being and even lives depend on.
Here are samples letters for you to send. Modify it if you need to, but please take the time to act on your own behalf. Also included is a doctor’s support letter that you can take to your physicians.
SAMPLE ONE: LYMPHEDEMA PATIENT LETTER
Re: Please support the Access to Physical Medicine and Rehabilitation Services Improvement Act, S.3963
Dear Senator or Representative INSERT NAME
As your constituent, I am asking you to co-sponsor the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963). This legislation is important because improves access to life-saving physical medicine and rehabilitation services for millions of Medicare beneficiaries. This bill does not expand services and will result in both short- and long-term savings for Medicare.
I am a lymphedema patient, and my ability to find qualified health care professionals to treat my condition has been severely restricted by a rule instituted by the Centers for Medicare and Medicaid Services (CMS) in June 2005. Congress did not authorize the “therapy-incident to” rule, which resulted in the loss of one-third of the educationally and clinically qualified providers to lymphedema patients. These specially certified massage therapists are supervised in the physician’s office by the physician and perform services currently approved by Medicare. However, Medicare no longer allows them to be reimbursed—an unauthorized change to a seven-year policy. This reimbursement policy is now trickling down into the commercial insurance payment system, which puts even more stress on the health care system.
Between 3 and 5 million Americans are afflicted with lymphedema. An estimated one-third (33 percent) of breast cancer survivors are affected because of surgery and radiation. For others, it is hereditary. There are many types of lymphedema, but it is when a limb—generally and arm or leg—swells uncontrollably because of damage to the lymph system. Lymphedema can be treated effectively but there is no cure. The savings to Medicare are significant when it is caught early and treated by qualified, certified therapists.
S.3963 will do three things:
1. Improve access to quality health care for Medicare beneficiaries
2. Reinstate physician choice of which qualified health care professionals they can hire to perform this treatment in their offices.
3. Provide cost savings to the Medicare program for services that are already covered.
Without this legislation, the power of choice for quality, affordable, accessible medical care will be in the hands of Medicare and insurance companies, not in the hands of the physicians and patients where it belongs.
Please contact me for more details or our Washington DC representative Bill Finerfrock at 202.544.1880 or bf@capitolassociates.com.
For more information on lymphedema, go to Lymphedema People or The National Lymphedema Network .
Sincerely,
YOUR NAME, COMPLETE ADDRESS, PHONE AND EMAIL
......
SAMPLE TWO:
We the members of the Lymphedema People national network of websites and support groups for lymphatic medical conditions support without qualification the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963) introduced by Sen. Craig Thomas of Wyoming. We thank Senator Thomas for his leadership role in introducing this legislation, and gratefully acknowledge this support in providing medical care to Medicare beneficiaries with lymphedema.
We implore Congress to work in a bi-partisan fashion to quickly pass this legislation and:
· Restore patient access to high quality, medically necessary health care services
· Restore the ability of physicians to practice medicine and hire and supervise the most qualified health care professionals
· Save money for the Medicare system by passing and implementing this law
Lymphedema People is a community created for, and by, people with the medical condition of lymphedema. Our mission is to:
· To provide lymphedema information to the people it affects
· To inform them about the condition, it's causes, complications, and treatments
· To share the knowledge that life does not end with lymphedema, there is hope.
To share a life with lymphedema that is rich, fulfilling and very rewarding.
We have shared now our message of this hope with more then 1,000,000 visitors to our main website.
Sincerely,
OUR NAME, COMPLETE ADDRESS, PHONE AND EMAIL
......
SAMPLE LETTER THREE (Physicians)
Re: Please Support the Access to Physical Medicine and Rehabilitation Services Improvement Act (S.3963) Dear
I am a physician who works with lymphedema patients. Because of a capricious and ill-advised rule made by the Centers for Medicare and Medicaid Services (CMS) in 2005, I can no longer employ the most qualified, most effective health care professionals to provide treatment to my lymphedema patients. With the “therapy-incident to” rule, physicians like me can no longer receive reimbursement for the complete decongestive therapy (CDT) provided by specialty certified massage therapists. CMS restricted who can provide ‘therapy-incident to” without Congressional approval and is applying standards that don’t make sense in the physical medicine and rehabilitation field of medicine.
The result of this rule is devastating to my patients, many of whom are breast cancer survivors. In fact, at least 60 percent of women who have had a mastectomy will develop lymphedema. Other patients develop lymphedema because it is hereditary. In all cases it is treatable and can prevent death, but it is an incurable, devastating disease.
S.3963 will do three things:
1. Restore and improve patient access to the most qualified health care professionals.
2. Will restore physician choice of who they can hire and supervise to perform CDT and other treatments, and be reimbursed for those services. Note that this is not an expansion of Medicare services.
3. It will save Medicare an estimated 38 percent on physical medicine and rehabilitation services provided in physician offices, according to two different MedPAC reports.
Failure to provide lymphedema therapy treatment under Medicare Part B will result in net increased Medicare Part A program costs of approximately $120 Million annually, according to the Coalition to Preserve Patient Access to Physical Medicine and Rehabilitation. The other therapists that are included in S.3963 will also save money for Medicare and will not add any new services.
CMS bureaucrats should not be practicing medicine. Please cosponsor S.3963.
You can contact me for more details or our Washington DC representative Bill Finerfrock at 202.544.1880 or bf@capitolassociates.com. For more information on lymphedema, go to Lymphedema People or National Lymphedema Network .
Sincerely,
name, full address, Phone, email
SAMPLE FOUR Physician Letter
I am a PHYSICIAN OR OTHER HEALTH CARE PROFESSIONAL and I rely on and work with certified athletic trainers. The 30,000 athletic trainers in the U.S. help me provide high quality, medically necessary health care services to an estimated 16 million patients each year. They are an important part of the health care system and my medical team. Athletic trainers help ensure patient access to quality health care in this time of workforce shortages.
My ability to work with athletic trainers has been impeded by an unfair rule made by the Center for Medicare and Medicaid Services (CMS) in July 2005. The CMS rule limits the ability of physicians to choose who can provide therapy services to Medicare beneficiaries. This ill conceived policy is causing serious problems with access to quality health care. It affects athletic trainers, lymphedema therapists, low-vision therapists and many other certified health care professionals.
By cosponsoring S.3963, the Access to Physical Medicine and Rehabilitation Services Improvement Act, and pressing for its speedy vote and passage you can ensure a higher quality of health care. S.3963 will restore the ability of physicians and patients to have access to the most qualified health care professionals.
Athletic trainers are nationally certified health care providers with proven clinical skills. Please regard this postcard as a statement supporting athletic trainers. I urge you to cosponsor S.3963 and press for a quick vote and passage to correct this harmful federal policy that is trickling down to private insurance companies. Without this legislation, the power of choice for medical care will be in the hands of insurance companies and bureaucrats, not in the hands of the physicians and patients where it belongs. Who do you want making your health care decisions?
Sincerely,
name, full address, Phone, email
==========
Information and Resources:
Lymphedema People
Tuesday, November 07, 2006
An unusual case of lymphedema tarda.
An unusual case of lymphedema tarda.
Hosnuter M,
Buyukates M,
Babuccu B.
Department of Plastic Reconstructive and Aesthetic Surgery, Zonguldak Karaelmas University Medical School, Kozlu/Zonguldak, Turkey.
BACKGROUND:
Lymphedema is the result of the equilibrium between the load to be cleared and the transport capacity of the clearing system. Lymphedema may be classified as primary or secondary, based on the underlying etiology. Primary lymphedema is an unusual disorder characterized by inadequate lymphatic drainage. Lymphedema tarda is a rare form of primary lymphedema.
CASE REPORT:
The case of lymphedema tarda documented here was chronic, progressive, and resistant to medical therapy and recurred several times after previous operations.
CONCLUSIONS:
We performed two-staged operations and we recommend that the staged excisional procedures offers reliable long-term improvement and minimizes postoperative complications in chronic advanced lymphedema.
Full PDF Article
Commentary:
Even after studying this case history, I am still opposed to surgical means for the correction of lymphedema. Complex Decongestive Therapy should and must be the first treatment option on lymphedema.
Please refer to my article:
Complications of Lymphedema Debulking Surgeries
I have seen horrendous cases of lymphedema treated successfully using CDT as a primary treatment option. The case literature has extensive documentation that these doctors should have referred to before undertaking these surgical procedures.
Pat O'Connor
Hosnuter M,
Buyukates M,
Babuccu B.
Department of Plastic Reconstructive and Aesthetic Surgery, Zonguldak Karaelmas University Medical School, Kozlu/Zonguldak, Turkey.
BACKGROUND:
Lymphedema is the result of the equilibrium between the load to be cleared and the transport capacity of the clearing system. Lymphedema may be classified as primary or secondary, based on the underlying etiology. Primary lymphedema is an unusual disorder characterized by inadequate lymphatic drainage. Lymphedema tarda is a rare form of primary lymphedema.
CASE REPORT:
The case of lymphedema tarda documented here was chronic, progressive, and resistant to medical therapy and recurred several times after previous operations.
CONCLUSIONS:
We performed two-staged operations and we recommend that the staged excisional procedures offers reliable long-term improvement and minimizes postoperative complications in chronic advanced lymphedema.
Full PDF Article
Commentary:
Even after studying this case history, I am still opposed to surgical means for the correction of lymphedema. Complex Decongestive Therapy should and must be the first treatment option on lymphedema.
Please refer to my article:
Complications of Lymphedema Debulking Surgeries
I have seen horrendous cases of lymphedema treated successfully using CDT as a primary treatment option. The case literature has extensive documentation that these doctors should have referred to before undertaking these surgical procedures.
Pat O'Connor
Friday, October 20, 2006
My lymphoscintigraphy (LAS) results showed no lymph vessels in legs
Q: My lymphoscintigraphy (LAS) results were interpreted and I was told that I have no lymph vessels in my legs. Can this be true?
A: No, this cannot be an accurate interpretation of your results, but rest assured, many patients have echoed your comments "precisely" in my experience. LAS measures uptake and transport of lymph over a period of time. A radioisotope, which can only be absorbed by lymphatics due to its molecular size, is injected into the system, usually at the toes, and diffuses into the swollen tissues. Radiological pictures are taken to mark the progression of the radioisotope over time.
I would first like to comment that sometimes LAS test results are misinterpreted simply due to the medical profession's inexperience performing this particular test. There are very few physicians who specialize in lymphology, much less call for routine LAS for his/her lymphedema patients. As such, it is quite unlikely that any patient would find a local facility specialized in providing this test, which is then followed by informed interpretation of the results.
Oftentimes, as so many of us realize, lymphedema as a disease condition is mislabeled and misunderstood. Commonly, whole batteries of tests are conducted to rule out other disease conditions including: deep vein thrombosis (DVT), heart disease (such as Congestive Heart Failure [CHF]), cancer, and liver failure, to name a few. Most would agree that it is prudent to run these tests to rule out serious additional health concerns and, once other problems are dismissed, lymphedema is generally considered a diagnosis of "exclusion" (everything else that could cause swelling has been ruled out).
One of the greatest problems encountered is that there are no agreed upon standards for administering LAS such as: time interval between injection to first image; second image and last image; amount of activity (movement/ exercise); type and duration of activity during periods between imaging, etc.
Another problem is that, unlike MRI, CT scan and dye injections, LAS does not provide a clear, resolute picture, but rather, shows a hazy image that requires a trained eye to interpret.
So why would you be told that there are no lymph vessels in your legs? The answer, again, becomes a matter of interpretation. When the injection is performed, a radioisotope, which can only be absorbed by lymphatics due to its molecular size, diffuses into the swollen tissues. Since lymphedema involves "stagnant" tissue fluid and poor transportation of lymph, it stands to reason that the injected solution would give a picture of little to no movement (i.e. Haze).
Furthermore, everyone has lymph vessels throughout the body since to be born without them would render the human being lifeless. In primary lymphedema, we know that, most often, less vessels and nodes exist and that the size/ caliber of these tissues is smaller than normal, therefore less uptake of lymph is seen and transport is sluggish. In secondary lymphedema, usually the lymph nodes are either damaged or removed causing many blocked connections from the vessels that were attached. In either situation, lymph vessels do indeed still exist; however, their function may be quite inadequate. If sufficient time is not taken during the LAS to record movement of tracer, then one could conclude that no vessels are working. However, in all cases, even when sufficient damage has been sustained, the lymphatic system is laboring to transport fluid wherever healthy vessels still exist. Perhaps two hours after the injection has been performed, tracer will be seen in other body areas indicating that it has made its way into the bloodstream via the thoracic duct.
It is important to address this misconception to clarify that lymphedema is nearly always treatable. It remains treatable even in the most advanced cases due to the ability of our lymphatic system to be "re-awakened" with proper stimulation, and to work more efficiently and effectively. Manual Lymph Drainage (MLD) has been shown to make vessels contract more frequently, thus propelling fluid through once fatigued vessels. Exercise within a compression bandage further stimulates vessel activity. So to be clear, vessels always exist, but they may not be visualized by LAS because LAS measures uptake of fluid and transport over time.
January-March 2006Steve Norton, CLT-LANA
NLN Question and Answer
The National Lymphedema network
A: No, this cannot be an accurate interpretation of your results, but rest assured, many patients have echoed your comments "precisely" in my experience. LAS measures uptake and transport of lymph over a period of time. A radioisotope, which can only be absorbed by lymphatics due to its molecular size, is injected into the system, usually at the toes, and diffuses into the swollen tissues. Radiological pictures are taken to mark the progression of the radioisotope over time.
I would first like to comment that sometimes LAS test results are misinterpreted simply due to the medical profession's inexperience performing this particular test. There are very few physicians who specialize in lymphology, much less call for routine LAS for his/her lymphedema patients. As such, it is quite unlikely that any patient would find a local facility specialized in providing this test, which is then followed by informed interpretation of the results.
Oftentimes, as so many of us realize, lymphedema as a disease condition is mislabeled and misunderstood. Commonly, whole batteries of tests are conducted to rule out other disease conditions including: deep vein thrombosis (DVT), heart disease (such as Congestive Heart Failure [CHF]), cancer, and liver failure, to name a few. Most would agree that it is prudent to run these tests to rule out serious additional health concerns and, once other problems are dismissed, lymphedema is generally considered a diagnosis of "exclusion" (everything else that could cause swelling has been ruled out).
One of the greatest problems encountered is that there are no agreed upon standards for administering LAS such as: time interval between injection to first image; second image and last image; amount of activity (movement/ exercise); type and duration of activity during periods between imaging, etc.
Another problem is that, unlike MRI, CT scan and dye injections, LAS does not provide a clear, resolute picture, but rather, shows a hazy image that requires a trained eye to interpret.
So why would you be told that there are no lymph vessels in your legs? The answer, again, becomes a matter of interpretation. When the injection is performed, a radioisotope, which can only be absorbed by lymphatics due to its molecular size, diffuses into the swollen tissues. Since lymphedema involves "stagnant" tissue fluid and poor transportation of lymph, it stands to reason that the injected solution would give a picture of little to no movement (i.e. Haze).
Furthermore, everyone has lymph vessels throughout the body since to be born without them would render the human being lifeless. In primary lymphedema, we know that, most often, less vessels and nodes exist and that the size/ caliber of these tissues is smaller than normal, therefore less uptake of lymph is seen and transport is sluggish. In secondary lymphedema, usually the lymph nodes are either damaged or removed causing many blocked connections from the vessels that were attached. In either situation, lymph vessels do indeed still exist; however, their function may be quite inadequate. If sufficient time is not taken during the LAS to record movement of tracer, then one could conclude that no vessels are working. However, in all cases, even when sufficient damage has been sustained, the lymphatic system is laboring to transport fluid wherever healthy vessels still exist. Perhaps two hours after the injection has been performed, tracer will be seen in other body areas indicating that it has made its way into the bloodstream via the thoracic duct.
It is important to address this misconception to clarify that lymphedema is nearly always treatable. It remains treatable even in the most advanced cases due to the ability of our lymphatic system to be "re-awakened" with proper stimulation, and to work more efficiently and effectively. Manual Lymph Drainage (MLD) has been shown to make vessels contract more frequently, thus propelling fluid through once fatigued vessels. Exercise within a compression bandage further stimulates vessel activity. So to be clear, vessels always exist, but they may not be visualized by LAS because LAS measures uptake of fluid and transport over time.
January-March 2006Steve Norton, CLT-LANA
NLN Question and Answer
The National Lymphedema network
Thursday, October 12, 2006
I Have Lymphedema Should I Take Antibiotics Before Dental Work?
I Have Lymphedema Should I Take Antibiotics Before Dental Work?
This is a frequent question that arises in all the online lymphedema support groups. My own personal opinion is that it depends upon your personal history with infections and with the stage of your lymphedema.
My preference is to take a prophylactic course anytime I have dental work. This is because I have such a difficult time with and am so very susceptible to cellulitis. Also, because a lymphedema limb is already immunocompromised, the risk of a dental infection spreading to the effected limb is a much greater risk.
Here is an excellent question and answer from the National Lymphedema Network's Q&A section on their website.
Dr. Kathleen Francis is the responder to the question:
Q: I have primary lymphedema of my left leg and had one episode of cellulitis in my leg about 7 years ago. I have to undergo dental treatment soon and have heard that I will need to take antibiotics before the procedure to avoid getting an infection. Is this true?
A: The answer to your question is not a simple one, unfortunately. The question of antimicrobial prophylaxis has been a controversial one for years and recommendations are still evolving. Although prophylaxis in certain groups has become generally accepted, not all applications have been proven. I will quote from an excellent review article on antibiotic prophylaxis in dentistry by Tong and Rothwell in the journal of the American Dental Association in 2000:
"There is a long held belief in the theory of focal infection such that subclinical infectious foci in the oral region .result in systemic illness or cause disease processes in distant locations. Although generally regarded as not having scientific merit, this concept often drives recommendations for the use antibiotics prophylaxis. As a result, dentists and physicians tend to use antibiotics in situations in which there are no clear scientific bases."
One group for whom antibiotic prophylaxis is very well documented in the literature is persons at risk for infective endocarditis (IE), an infection of the lining of the heart or heart valves that can be life-threatening. Those at highest risk for endocarditis include persons with prosthetic cardiac valves, previous endocarditis, severe congenital heart disease, some heart valve disorders, or certain types of pulmonary or ventricular shunts.
Those dental procedures that appear to carry the highest risk for susceptible patients include dental extraction, periodontal procedures such as surgery or scaling, certain endodontic surgery, dental implants and reimplantation, initial placement of orthodontic bands, interligamentary local anesthetic injections, and prophylactic cleaning with anticipated bleeding.
The trend over recent years has been to recommend antibiotic prophylaxis in dentistry for fewer conditions. The American Academy of Orthopedic Surgeons now recommends against routine antibiotic prophylaxis in patients with prosthetic joint replacements. This arose, in part, from studies showing that the risk of death from severe reactions to antibiotics actually far outweighed the risk of late prosthetic joint infection.
In returning to your specific question, the answer at this time is that there is no specific scientifically supported recommendation for antibiotic prophylaxis for dental procedures in patients with lymphedema, all of whom have some risk of cellulitis in the affected limb due to a compromised lymphatic system. Bear in mind that some reactions to antibiotics can be fatal, whereas cellulitis is almost never life-threatening.
The bottom line is that without good scientific studies examining the question of prophylaxis and lymphedema, individuals with lymphedema planning to undergo dental work should be evaluated carefully by a physician to determine the relative risks and benefits of antibiotic prophylaxis in each particular case. My bias is to use antibiotic prophylaxis only for those high-risk dental procedures described above in a few patients who continue to have multiple recurrent episodes of severe cellulitis in the lymphedematous limb or those who have developed cellulitis following a dental procedure in the past. However, different physicians have different approaches to this, and you need to speak with your own physician and dentist who have insight into your particular medical history.
This is a frequent question that arises in all the online lymphedema support groups. My own personal opinion is that it depends upon your personal history with infections and with the stage of your lymphedema.
My preference is to take a prophylactic course anytime I have dental work. This is because I have such a difficult time with and am so very susceptible to cellulitis. Also, because a lymphedema limb is already immunocompromised, the risk of a dental infection spreading to the effected limb is a much greater risk.
Here is an excellent question and answer from the National Lymphedema Network's Q&A section on their website.
Dr. Kathleen Francis is the responder to the question:
Q: I have primary lymphedema of my left leg and had one episode of cellulitis in my leg about 7 years ago. I have to undergo dental treatment soon and have heard that I will need to take antibiotics before the procedure to avoid getting an infection. Is this true?
A: The answer to your question is not a simple one, unfortunately. The question of antimicrobial prophylaxis has been a controversial one for years and recommendations are still evolving. Although prophylaxis in certain groups has become generally accepted, not all applications have been proven. I will quote from an excellent review article on antibiotic prophylaxis in dentistry by Tong and Rothwell in the journal of the American Dental Association in 2000:
"There is a long held belief in the theory of focal infection such that subclinical infectious foci in the oral region .result in systemic illness or cause disease processes in distant locations. Although generally regarded as not having scientific merit, this concept often drives recommendations for the use antibiotics prophylaxis. As a result, dentists and physicians tend to use antibiotics in situations in which there are no clear scientific bases."
One group for whom antibiotic prophylaxis is very well documented in the literature is persons at risk for infective endocarditis (IE), an infection of the lining of the heart or heart valves that can be life-threatening. Those at highest risk for endocarditis include persons with prosthetic cardiac valves, previous endocarditis, severe congenital heart disease, some heart valve disorders, or certain types of pulmonary or ventricular shunts.
Those dental procedures that appear to carry the highest risk for susceptible patients include dental extraction, periodontal procedures such as surgery or scaling, certain endodontic surgery, dental implants and reimplantation, initial placement of orthodontic bands, interligamentary local anesthetic injections, and prophylactic cleaning with anticipated bleeding.
The trend over recent years has been to recommend antibiotic prophylaxis in dentistry for fewer conditions. The American Academy of Orthopedic Surgeons now recommends against routine antibiotic prophylaxis in patients with prosthetic joint replacements. This arose, in part, from studies showing that the risk of death from severe reactions to antibiotics actually far outweighed the risk of late prosthetic joint infection.
In returning to your specific question, the answer at this time is that there is no specific scientifically supported recommendation for antibiotic prophylaxis for dental procedures in patients with lymphedema, all of whom have some risk of cellulitis in the affected limb due to a compromised lymphatic system. Bear in mind that some reactions to antibiotics can be fatal, whereas cellulitis is almost never life-threatening.
The bottom line is that without good scientific studies examining the question of prophylaxis and lymphedema, individuals with lymphedema planning to undergo dental work should be evaluated carefully by a physician to determine the relative risks and benefits of antibiotic prophylaxis in each particular case. My bias is to use antibiotic prophylaxis only for those high-risk dental procedures described above in a few patients who continue to have multiple recurrent episodes of severe cellulitis in the lymphedematous limb or those who have developed cellulitis following a dental procedure in the past. However, different physicians have different approaches to this, and you need to speak with your own physician and dentist who have insight into your particular medical history.
Friday, October 06, 2006
Lymphedema Call to Action - Lymphedema Stakeholders
Lymphedema Stakeholders, Inc. is proud to announce that Senator Craig Thomas (R–Wyo.) introduced federal legislation on Thursday, September 28, that will enable ALL state licensed or certified therapy providers to once again provide physical medicine and rehabilitation services to Medicare beneficiaries under the supervision of physicians in “incident to” reimbursement situations.
The Access to Physical Medicine and Rehabilitation Services Improvement Act of 2006 (S.3963) will restore physician choice of whom they can hire to provide services to their Medicare patients. This includes lymphedema therapists that are RN’s, LPN’s and LMT’s.
This legislation is an important step to ensuring Medicare beneficiaries access to quality health care and restoring physician choice of therapy providers working under their supervision.
The second part of the bill makes lymphedema therapists covered providers for the purposes of Medicare reimbursement. It is believed that lymphedema therapists represent a great opportunity for cost savings to the Medicare program. Secondly, breast cancer survivors suffering from lymphedema have lost access to more than one-third of these specially trained therapists because of the Medicare rule.
We need your help with the following:
What to do this week:
· Immediately activate your grassroots in Wyoming. We’ve already encountered strong opposition to this legislation. Ask your members and contacts (patients, too!) in Wyoming to attend town hall meetings to demonstrate their support of this legislation and Sen. Thomas’ bold leadership. The web form page is here:
Wyoming members or anyone knowing anyone in Wyoming should immediately call or write Erin Tuggle at (202) 224.6441 and tell her how much they appreciate Senator Thomas’ support of your profession. Erin is Sen. Thomas’ legislative aide. For your members outside of Wyoming, a quick e-mail thank you will be helpful.
· Call or write Sen. Alren Specter and thank him for co-sponsoring S.3963. (202) 224-4254
Call or write Sen. Jim Bunning and thank him for co-sponsoring S. 3963. (202) 224-4343
What to do in the coming weeks and months:
· Make an appointment to see your congressperson while they are in his/her district campaigning (October-early November). A meeting with your representatives in your hometown will make an impact. Use the attached talking points
· Make future contacts with your home senators and representatives and ask them to co-sponsor or support S.3963. The more co-sponsors we have, the more likely it is our legislation will be successful. This can be a telephone call, a letter, an email, or an in-person visit. This will be a sustained campaign and I’ll be in contact with you regularly to request your help.
· Contact the Coalition to Preserve Patients Access Organizer (Cate Brennan Lisak - 800.879.6282 ext. 148) if you plan to travel to Washington D.C. She will assist you with getting appointments with your congressperson and talking points, etc.
· Get your physicians, other health care providers and patients involved.
Thank you for your support and contribution of your valuable resources. On behalf of Lymphedema Stakeholders and the Coalition to Preservice Patient Access to Physical Medicine and Rehabilitation Services we are grateful for your support. We believe that together we can get the unfair and ill-advised therapy-incident to rule corrected and improve patient care. Our opposition wants to continue to limit patient access to quality health care and not allow physician choice of who can provide therapy services. They are spreading misinformation about the educational and clinical qualifications of therapy providers like you, and we need each other’s commitment to action.
Respectfully submitted,
Cheri L. Hoskins, CCT
President, Lymphedema Stakeholders
Saturday, September 30, 2006
REMINDER - 9th State of Georgia Lymphedema Education & Awareness Day
9th State of Georgia Lymphedema Education & Awareness Day
MARK YOUR CALENDERS!
Our conferences here in Georiga are absolutely fantastic and there is no charge. The only expenses you might have would be the lunch and/or lodging if you come from out of town.
Last year we had Dr. Kathleen Francis updating us on research. She was great...totally cool person too!!!! Here's the scoop on this years conference: 9th State Of Georgia Lymphedema Education & Awareness Day
Sponsored by
Lighthouse Lymphedema Network
Luncheon & Program
Saturday, October 28, 2006 9:00 a.m. - 3:00 p.m. at the Renaissance Waverly Hotel 2450 Galleria Parkway, NW - Atlanta, GA
Speaker: David N. Finegold, M.D.
Some topics to be discussed:
· The genetics of primary lymphedema
· Post-mastectomy secondary lymphedema
· The future of lymphatic research
Our sincere thanks to the following businesses for their financial support of this educational seminar.
Please stop by the tables and see the services and products provided by our supporters for the treatment of lymphedema and related conditions.
· A Woman's Place - Northside Hospital
· BSN-Jobst
· CircAid Medical Products
· Compass Healthcare, Inc.
· Compression Design
· Drapers Fitness & Rehab Consulting
· Gwinnett Medical Center
· Juzo · Medi, USA
· Peninsula Medical (The Reid Sleeve People)
· Sigvaris, Inc.
· Solaris, Inc. (Tribute/Swell Spots)
Be there or be square
MARK YOUR CALENDERS!
Our conferences here in Georiga are absolutely fantastic and there is no charge. The only expenses you might have would be the lunch and/or lodging if you come from out of town.
Last year we had Dr. Kathleen Francis updating us on research. She was great...totally cool person too!!!! Here's the scoop on this years conference: 9th State Of Georgia Lymphedema Education & Awareness Day
Sponsored by
Lighthouse Lymphedema Network
Luncheon & Program
Saturday, October 28, 2006 9:00 a.m. - 3:00 p.m. at the Renaissance Waverly Hotel 2450 Galleria Parkway, NW - Atlanta, GA
Speaker: David N. Finegold, M.D.
Some topics to be discussed:
· The genetics of primary lymphedema
· Post-mastectomy secondary lymphedema
· The future of lymphatic research
Our sincere thanks to the following businesses for their financial support of this educational seminar.
Please stop by the tables and see the services and products provided by our supporters for the treatment of lymphedema and related conditions.
· A Woman's Place - Northside Hospital
· BSN-Jobst
· CircAid Medical Products
· Compass Healthcare, Inc.
· Compression Design
· Drapers Fitness & Rehab Consulting
· Gwinnett Medical Center
· Juzo · Medi, USA
· Peninsula Medical (The Reid Sleeve People)
· Sigvaris, Inc.
· Solaris, Inc. (Tribute/Swell Spots)
Be there or be square
NLN - Parents' Lymphedema Action Network
NLN - Parents' Lymphedema Action Network
Announcing
An incredible opportunity for parents of children with lymphedema to participate in live telephone conferences specifically designed to help our children with lymphedema.
We are very excited about this and encourage all our visitors who have children with LE to support and participate in this wonderful program.
For complete information, including how to register, forum schedules and how to participate please visit:
NLN - Parents Lymphedema Action Network
This first conference is coming up on October 6th, 2006:
Topic: Garments, bandages & alternative products
Guest Speaker: Guenter Klose, CI, CLT-LANA (bio)
Email Questions to: guenter@klosetraining.com (Subject: PLAN Forum Oct 06)
Conference Call: Wednesday, October 18, 2006 at 3:00 pm PST
Announcing
An incredible opportunity for parents of children with lymphedema to participate in live telephone conferences specifically designed to help our children with lymphedema.
We are very excited about this and encourage all our visitors who have children with LE to support and participate in this wonderful program.
For complete information, including how to register, forum schedules and how to participate please visit:
NLN - Parents Lymphedema Action Network
This first conference is coming up on October 6th, 2006:
Topic: Garments, bandages & alternative products
Guest Speaker: Guenter Klose, CI, CLT-LANA (bio)
Email Questions to: guenter@klosetraining.com (Subject: PLAN Forum Oct 06)
Conference Call: Wednesday, October 18, 2006 at 3:00 pm PST
* * * * * *
We Support - The National Lymphedema Network
Sunday, September 24, 2006
A Swell Condition That’s Not So Swell
A Swell Condition That’s Not So Swell
written by Julia Auton
Controlling lymphedema
One of the greatest frustrations breast cancer patients have about treatment is getting the right information through every step of the process—and this includes after treatment ends. One area where myths and misinformation dwell is the subject of lymphedema. What is it? Who gets it? What can be done about it? And, is there a cure?
In our culture of mass media, you would think there would be ample information about this condition. But treatment for lymphedema only reached the U.S. fairly recently, within the last decade, after it was developed in Europe.
Common myths include:
· You can’t get it if you’re young.
· If you don’t develop the condition immediately after surgery, then it will never be a problem.
· Lymphedema will eventually go away on its own without treatment.
My main source of information—and misinformation--came from hearsay from others and whatever I could find on the Internet. Even healthcare professionals were not forthcoming about the risks and precautions. I was told I was “low risk” because I was young and in good shape from exercising regularly. I was advised to do whatever I could to prevent infection in my right arm (where I had 37 lymph nodes removed) by wearing gloves during yard work, and avoiding blood pressure screening and shots or blood work in that arm.
So, I go tra-la-la-ing into the future, unknowingly engaging in every behavior that put me at risk for developing lymphedema. One day after many hours of pulling weeds—with gloves—I notice my lower arm and hand were swollen, resembling a Cabbage Patch doll, a telltale sign of lympedema’s arrival.
To save you the frustration of separating fact from fiction, I talked with Carol Crochet, a physical therapist specializing in treating lymphedema at the Rehab Results Group at DeKalb Medical Center in Atlanta, GA. DeKalb was the second center in metro Atlanta to offer a treatment program in 1997.
The good news, she told me, is lymphedema can be treated. The bad news is there is no cure. Once you have this condition, it never goes away entirely. But, the sooner you seek treatment, the greater your chances are for getting--and keeping--it under control for the rest of your life.
What is it?
Lymphedema is any accumulation of fluid in the arm where you have undergone surgery and/or radiation therapy for breast cancer. Whether it’s a mild case or your arm is extremely enlarged, if there's swelling, you have lymphedema.
"This abnormal accumulation of high protein fluid is caused by the malfunctioning of lymphatic system, which can no longer effectively move lymph fluid throughout your body," Crochet explains.
Who gets it?
"Approximately 30% of breast cancer patients develop lymphedema," Crochet says. But, there are no known indicators at this point as to who develops it. You can have lymphedema, even if you--
-
only had a few lymph nodes removed,
-
are young,
-
are not overweight and exercise regularly,
-
didn’t develop it right after surgery—it can occur any time over your lifetime.
What causes it?
Any stress can bring on lymphedema, such as --
-
Infection—due to burns, insect bites, cuts or injury,
-
Heavy lifting,
-
Temperature extremes (hot or cold),
-
Drop in air pressure (such as during flights),
-
Straining your arm due to carrying heavy shoulder bags or luggage, and overusing your arm during repetitive physical activity.
How can you reduce your risk?
Take care of your treated arm, Crochet emphasizes. This covers everything from avoiding needles in your "vulnerable" arm to not carrying a heavy purse over your shoulder. But, it also includes lesser-known behaviors – like, burning your arm when reaching into the oven, or experiencing hot temperatures from a sauna or whirlpool.
The key is proper skin care— since it's your protective layer—to prevent any opening, where bacteria can enter and cause infection through cuts, scrapes and burns. This means keeping your skin clean and moisturized daily.
Additional ways to keep lymphedema infection away include–
-
wearing gloves during housework and yard work,
-
not cutting your cuticles,
-
using insect repellent to prevent bites,
-
using an electric razor for shaving under your arms and wearing antiperspirants without aluminum.
Also, avoid stress on your "vulnerable" arm, which means taking frequent breaks when you're involved in intense, physical activity.
However, if the inevitable happens, and swelling occurs, seek treatment quickly with an occupational therapist (OT) or physical therapist (PT) who specializes in lymphedema.
How is it treated?
Treatment involves an evaluation, patient education and therapy.
"Patient compliance is critical for achieving optimal results with lymphedema treatment," says Crochet. " Patients must come in for treatment every day for two to four weeks--or longer--and treatment takes approximately one and a half hours. Then, patients must wear the compression bandages when not at the clinic.”
Treatment programs can take the form of complex lymphatic therapy (CLT), which is the Australian version, or complete decongestive therapy (CDT), which is the European protocol. Both programs consist of bandaging, exercise, manual lymphatic drainage (massage), skincare precautions, and instruction in a home program.
Once the swelling is reduced and you plateau, you’re ready for the maintenance phase. Managing your condition involves performing the exercises and self-massage at home, and wearing a compression sleeve.
"It’s recommended that you wear the compression sleeve all day, every day as part of your normal routine," says Crochet. "There are also nighttime garments, if lymphedema is harder to control. Women without lymphedema but who are at risk for developing it should also wear a compression sleeve when conducting any physical activity to prevent swelling, as well as during flights, since the drop in air pressure in the cabin can trigger swelling."
Also, note that the material the compression sleeves are made of are only guaranteed to be effective for six months and must be washed daily, so it’s suggested that patients buy two and alternate wearing them. (Note: Medicare and Medicaid don’t cover the cost of sleeves and only a limited number of private insurers do.)
Women suffering from lymphedema should also eat a healthy diet, manage their weight, and engage in regular cardio exercise, such as walking and swimming.
“Exercise causes your respiration rate to increase, so you breathe more deeply, and this stimulates your lymphatic system to move lymph fluid throughout your body,” Crochet explains.
With all the time and effort involved, treatment appears to be a daunting task. But, Crochet warns, over time, lymphedema that is not controlled through treatment can worsen—setting off more discomfort, disfigurement and pain—and become even more fibrotic, causing the tissue to feel harder. And, at least that is enough incentive for me to comply.
BreastCareSite
written by Julia Auton
Controlling lymphedema
One of the greatest frustrations breast cancer patients have about treatment is getting the right information through every step of the process—and this includes after treatment ends. One area where myths and misinformation dwell is the subject of lymphedema. What is it? Who gets it? What can be done about it? And, is there a cure?
In our culture of mass media, you would think there would be ample information about this condition. But treatment for lymphedema only reached the U.S. fairly recently, within the last decade, after it was developed in Europe.
Common myths include:
· You can’t get it if you’re young.
· If you don’t develop the condition immediately after surgery, then it will never be a problem.
· Lymphedema will eventually go away on its own without treatment.
My main source of information—and misinformation--came from hearsay from others and whatever I could find on the Internet. Even healthcare professionals were not forthcoming about the risks and precautions. I was told I was “low risk” because I was young and in good shape from exercising regularly. I was advised to do whatever I could to prevent infection in my right arm (where I had 37 lymph nodes removed) by wearing gloves during yard work, and avoiding blood pressure screening and shots or blood work in that arm.
So, I go tra-la-la-ing into the future, unknowingly engaging in every behavior that put me at risk for developing lymphedema. One day after many hours of pulling weeds—with gloves—I notice my lower arm and hand were swollen, resembling a Cabbage Patch doll, a telltale sign of lympedema’s arrival.
To save you the frustration of separating fact from fiction, I talked with Carol Crochet, a physical therapist specializing in treating lymphedema at the Rehab Results Group at DeKalb Medical Center in Atlanta, GA. DeKalb was the second center in metro Atlanta to offer a treatment program in 1997.
The good news, she told me, is lymphedema can be treated. The bad news is there is no cure. Once you have this condition, it never goes away entirely. But, the sooner you seek treatment, the greater your chances are for getting--and keeping--it under control for the rest of your life.
What is it?
Lymphedema is any accumulation of fluid in the arm where you have undergone surgery and/or radiation therapy for breast cancer. Whether it’s a mild case or your arm is extremely enlarged, if there's swelling, you have lymphedema.
"This abnormal accumulation of high protein fluid is caused by the malfunctioning of lymphatic system, which can no longer effectively move lymph fluid throughout your body," Crochet explains.
Who gets it?
"Approximately 30% of breast cancer patients develop lymphedema," Crochet says. But, there are no known indicators at this point as to who develops it. You can have lymphedema, even if you--
-
only had a few lymph nodes removed,
-
are young,
-
are not overweight and exercise regularly,
-
didn’t develop it right after surgery—it can occur any time over your lifetime.
What causes it?
Any stress can bring on lymphedema, such as --
-
Infection—due to burns, insect bites, cuts or injury,
-
Heavy lifting,
-
Temperature extremes (hot or cold),
-
Drop in air pressure (such as during flights),
-
Straining your arm due to carrying heavy shoulder bags or luggage, and overusing your arm during repetitive physical activity.
How can you reduce your risk?
Take care of your treated arm, Crochet emphasizes. This covers everything from avoiding needles in your "vulnerable" arm to not carrying a heavy purse over your shoulder. But, it also includes lesser-known behaviors – like, burning your arm when reaching into the oven, or experiencing hot temperatures from a sauna or whirlpool.
The key is proper skin care— since it's your protective layer—to prevent any opening, where bacteria can enter and cause infection through cuts, scrapes and burns. This means keeping your skin clean and moisturized daily.
Additional ways to keep lymphedema infection away include–
-
wearing gloves during housework and yard work,
-
not cutting your cuticles,
-
using insect repellent to prevent bites,
-
using an electric razor for shaving under your arms and wearing antiperspirants without aluminum.
Also, avoid stress on your "vulnerable" arm, which means taking frequent breaks when you're involved in intense, physical activity.
However, if the inevitable happens, and swelling occurs, seek treatment quickly with an occupational therapist (OT) or physical therapist (PT) who specializes in lymphedema.
How is it treated?
Treatment involves an evaluation, patient education and therapy.
"Patient compliance is critical for achieving optimal results with lymphedema treatment," says Crochet. " Patients must come in for treatment every day for two to four weeks--or longer--and treatment takes approximately one and a half hours. Then, patients must wear the compression bandages when not at the clinic.”
Treatment programs can take the form of complex lymphatic therapy (CLT), which is the Australian version, or complete decongestive therapy (CDT), which is the European protocol. Both programs consist of bandaging, exercise, manual lymphatic drainage (massage), skincare precautions, and instruction in a home program.
Once the swelling is reduced and you plateau, you’re ready for the maintenance phase. Managing your condition involves performing the exercises and self-massage at home, and wearing a compression sleeve.
"It’s recommended that you wear the compression sleeve all day, every day as part of your normal routine," says Crochet. "There are also nighttime garments, if lymphedema is harder to control. Women without lymphedema but who are at risk for developing it should also wear a compression sleeve when conducting any physical activity to prevent swelling, as well as during flights, since the drop in air pressure in the cabin can trigger swelling."
Also, note that the material the compression sleeves are made of are only guaranteed to be effective for six months and must be washed daily, so it’s suggested that patients buy two and alternate wearing them. (Note: Medicare and Medicaid don’t cover the cost of sleeves and only a limited number of private insurers do.)
Women suffering from lymphedema should also eat a healthy diet, manage their weight, and engage in regular cardio exercise, such as walking and swimming.
“Exercise causes your respiration rate to increase, so you breathe more deeply, and this stimulates your lymphatic system to move lymph fluid throughout your body,” Crochet explains.
With all the time and effort involved, treatment appears to be a daunting task. But, Crochet warns, over time, lymphedema that is not controlled through treatment can worsen—setting off more discomfort, disfigurement and pain—and become even more fibrotic, causing the tissue to feel harder. And, at least that is enough incentive for me to comply.
BreastCareSite
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