My Life with Lymphedema and Lymphoma - January 2007

My Life with Lymphedema and Lymphoma - January 2007

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It has been a very long time since I posted on how my life is with lymphedema and lymphoma, so I thought I would put in a brief update.

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Something started going terribly wrong with my body in early 2006 and I began to experience total body lymphedema. My abdomen and chest filled up with fluids and I was not able to stop or prevent it from becoming worse.

It was truely one of the most horrible experiences of my life as I became more and more incapacitated and the pain associated with it was overwhelming, both physically and psychologically.

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I became unable to do even the most simple of tasks like tie my shoe and even eventually could no longer take care of my legs by putting lotion on them and bandage wrapping them.

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By the time of the National Lymphedema Network's conference in very early November, I was barely able to get around with a cane. At the conference, I was confined to a wheelchair for a large portion of the conference. I honestly could not have made it through the conference without the help of Joan White and Cheri Hoskins who were always there to help and to push me from event to event. A therapist name Carmelita Rifkin also came each dayto my room to wrap and care for my legs. All three were truely angels of kindness and I will always have a deep deep appreciation for all they did.

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The conference ended and I returned to work, for only a week. By November 12th, I was so full of fluids that I could breathe only while standing up. My son, Patrick, took me to the emergency room at Gwinnett Medical Center and I was subsequently admitted as an inpatient.

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I was in that hospital from November 12, 2006 to December 8, 2006 when I was transferred by ambulance to the Lakeshore Rehabilitation Hospital in Birmingham, Alabama to be under he care of Dr. Paula Stewart.

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All in all, the doctors were able to remove around sixty pounds of fluids of my chest and abdomen. During the first week at Gwinnett, they also drained two and a half quarts of fluid from the right lung. Interestingly, the fluid has always previously been a golden amber color, this time it was pure chylous...milky white in color. On December 22, 2006 I was finally released from Lakeshore and came home.

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Then, in the afternoon of December 27th, I began to experience horrendous pain in my back between the left shoulder blade and spine. Again, i was taken to Gwinnett and admitted with a pnuemothorax. They again drained my right lung. In only five weeks, two quarts of fluid had returned to the lung.

I was released on December 31st and finally returned to work on January 4, 2007.

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But, something had to be done about the lung fluid as you can not safely keep going back time after time to drain the lung, so a pulmonary doctor and a thoracic surgeon was called in.

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This coming Monday, Januar 15th, I will be admitted yet again to Gwinnett and undergo a surgical procedure. Several small incisions will be made and the area between the lung lining and the rib lining will be filled with talcum powder in hopes that it will effectively block off the cavity from further fluid accumulation.

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While the doctor has said there may be only a 50-50 chance of success due to the lymphedema, I feel it is a chance I must take. Each month now, it seems that right lung fills up with a couple liters of fluid. There are only so many times that you can drain a lung before complications set in.

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.The worse part and perhaps the most painful is this tube that will be sticking out of my side for a few days. While he is in there, a small camera will be inserted and some biopsies of the pleura will be taken. If all goes well, he will drain the left lung too, as it shows about 1 1/2 liters of fluid.

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The bad thing is, is that no one really has any clear explanation of what triggered all these events. It was also discovered that my blood protein level had dropped to a dismal 1.5, which is far far short of the ideal 4.5-5.5 level.

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Dr. Stewart has one theory that ties in the drop in the proein level, tied in with the lymphedema to cause all the swelling and fluid collection.

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The other theory involves the lymphoma. My incredible oncologist, Dr. Stephen Szabo would describe the lymphoma as "not in remission but contained." So somehow perhaps everything just went together to cause this disaster.

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I'm just so relieved though that thus far, the massive swelling has not returned and that I am once again able to do so many things...especially play with my new grandson Connor, who was born on October 15, 2006.

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While in the hospital, I keep a fair update on events in my blog:

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The Life and Times of Pat O'Connor

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For earlier articles on my life with lymphedema and lymphoma see:

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My Life with Lymphoma and Lymphedema

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My Life with Lymphoma and Lymphedema - Part Two

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*Clinical Considerations for the Diagnosis and Management of Lymphoma with Primary Lymphedema

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Lymphedema and Lymphoma - an Update

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My Life with Lymphoma and Lymphedema - Part Three

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Pat O'Connor

How to Do Multilayer Compression Bandaging of the Lymphedema Leg

How to Do Multilayer Compression Bandaging of the Lymphedema Leg
The goal of compression wrapping is to build a "custom fitted" compression garment for the affected limb(s), applied daily by patient and caregiver, which will help to massage the fluid out of the affected area during normal movement and keep out the additional fluid. The wrapped limb should look uniform and smooth ll the way up with few bulges and hollows as possible.

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1.) Assemble all material in area you will be using to wrap

2.) Be comfortable. Sit or lie while wrapping foot.

3.) Stockinette goes on first.

4.) The gauze (Elastomull) toe/foot wrap goes on second

a. The first round is an "anchoring" wrap. Start with the tail under the roll, laying the tail on the top of the foot and bringing the roll completely around the arch back to the top of the foot to catch the end. Then go back around the foot again back to your starting point. b. Bring the gauze up to the tip of the first toe. The first round on the toe angles up close to but not over the tip. Wrap each toe until covered, 1-4 rounds, spiraling down toward foot. Do not allow to bunch behind the toes. Do not pull tight. c. Anchor around foot after each toe is covered. Coming off the back of the toe, bring the gauze around sole to the top of the foot and proceed to the top of the next toe. d. Finish remaining toes in same manner. Wind left over gauze around foot loosely, spiraling toward ankle.

5. If used, apply white fluffy padding (Artiflex) now. Wrap entire leg, putting several layers around knee. Cover heel well also.

6. If used, foam pad goes on top of the foot so the edge rests at the base of the toes. You might have enough gauze left from wrapping toes to secure the foam piece.

7. If used, place foam pads over ankle bones. Padding might also be recommended over the front of the ankle. This fills in the hollows. Wrap over foam.

8. Place the additional pieces of foam, chip bags, or other padding where they have been determined to be the most effective. Vary the formula for filling in spaces.

9. Brown (Comprilan) bandaging goes on last. Do not wrap toes. Start with an 8cm wrap on the foot at the base of the toes. Toes should be pointing up, foot pulled toward body (flexed).

10. You will probably use 2 of the 8cm rolls on the foot and ankle. Roll around the foot once or twice, then roll around the ankle, around the foot angling up and down to form the herringbone pattern. Continue until you have covered foot and ankle. Keep loose, especially across front of ankle.

11. After the ankle roll, start with 1-3 rolls of 10 cm bandage. This should cover upto or just over the knee. Continue up the thigh with 2-6 (or more for very large areas) rolls of 12cm bandage. Remember to pad behind the knee.

12. If slipping down of bandages is a problem, especially in the thigh area, a roll of white bandage (Isoband) can be spiraled around the limb, like a foundation, to which the brown bandages can cling.

13. You may tape ends of bandages to secure. As you become more experienced, you may be able to use less tape. Tape only to the brown bandages.

14. Alternate the direction of each wrap as you add it.

15. Bandage Knee

a. On the lower leg, complete the bandage to just below the knee. b. The next bandage, roll one time around the lower leg just below the knee c. Complete the circle around the thigh, above the knee d. Bring the bandage down at an angle across the patella (Knee cap) to below the knee e. Circle the lower leg completely, returning to the front of the leg. Angle the bandage up across the patella (knee cap) f. Each bandage is about 1/2 inch lower than the previous pass on the thigh, and about 1/2 inch higher than the previous pass on the lower leg. g. Complete the instructions 3 through 7 until you have used up the bandage. One entire bandage is used to "cage" in the knee. h. Start the next bandage belowe the knee on the lower leg. Spiral up over the baandaged knee, this time widening your spacing to about 1".

16. Avoid wrinkles, bunching, gapping and loose ends in the wraps.

17. You may give small tugs as you bandage to keep the wraps firm. Do not pull the bandage roll as you may wrap too tight. Check the uniformity of the compression by plucking at the wraps and comparing the tension.

18. Wrap all the way to the groin, capturing the fluid at the top of the thigh as much as possible. Bandages are more likely to stay up if the leg is wrapped up to the junction between the leg and body.

19. Tape securely at the top and cover all with stretch fishnet (Tubigauze/Elastinet)

20. You should sleep in your wraps. Wear your wraps 22 hours per day, off only to bathe, lotion, dress and allow skin to "breath" for about 2 hours per day. After you ahve completed the intensive phase of therapy you may sleep in your wraps and wear a compression garment during the day.

**Special thanks to Healthsouth Lakeshore Rehabilitation Hospital - Birmingham, Alabama

Tips on Inpatient Lymphedema Treatment Centers

Tips on Inpatient Lymphedema Treatment Centers
After just having spent a couple weeks in an inpatient lymphedema treatment center, I had a few thoughts I wanted to share about what to look for and expect from such a facility.

Staff:

1.) What is the training and certification of the lymphedema massage therapists? This includes where they received training, how they were certified, are they LANA certified and do they partipate in orgnizations like the National Lymphedema Network, where they are kept abreast of new developments and treatment modalities.

2.) Is the treatment supervised daily by an actual physcian or is it operated basically by a lymphedema therapist?

If you go to an inpatient though, the one thing I would do is to have the treatment plan given to you in writing and would insist it be followed to the T.

The Treatment should include:

(1) Being given complete CDT/MLD by the therapist

(2) Being taught how to do self CDT. Now your partner will need to learn this as well, because initially, it might be almost impossible at this point for you to do the leg massage yourself. You will need to consistently do this daily.

(3) Use of diuretucs. Even though the use of diuretics is basically opposed in the treatment of lymphedema, there may be times of urgency, when the fluid accumlation can be life threatening that diuretics may be needed. This has to be discussed with your lymphedema doctor to see if it is necessary and appropriate for you.

(4) Bandaging...both having it done by the therapist, and learning how to do it correctly yourself.

(5) Exercise....absolutely essential as it will not only help get the body strengthened, but exercise/movement facilitates lymph movement and flow.

(6) Water exercises...another excellent method of helping to clear the fluid out.....for me, it was "Mahvelous"...absolutely loved that part.

(7) Diet. Important to eat in a healthy manner to not only get the nutrients, but help maintain regular body weight. If you are overweight from bad dietary habits, you are seriously complicating your lymphedema and this issue simply has to be addressed and worked on.

(8) Examination. If your full body lymphedema is a sudden or "new" experience, I personally feel there should be investigations to see what might have triggered the incidence. Sometimes, such as in my case, there wasa disasterously low blood protein level which contributed to the cycle.

(9) For the leg lymphedema, the treatment should not include the use of these so-called lymphedema pumps. These cause further damage to the micro-lymphatics, contribute to increased fibrosis and can be responsibile for the development of genital lymphedema.

Special Consideration: If you are experiencing breathing difficulties, you need to have at least an xray to determine if there is a pleural effusion. If so, this needs to be drained and followed up on.

Finally, I would really suggest you write down, completely, your expectations of the treatments and promised results. Give a copy to your doctor and discuss it with them. Keep a copy for yourself.

Just a few thoughts, I wish I had thought of before my experience.

One more thing, seriously ask yourself and the lymphedema doctor if infact an inpatient stay is really what is needed - or canyour expectations and needs be met successfully in an outpatient setting.

Pat O'Connor

NLN - PLAN Conference for January 30, 2007

This just in from the National Lymphedema Network:

Parent's Lymphedema Action Network

I just wanted to give you a quick heads up that the PLAN Educational Forum has been updated on our website PLAN
and that the next call is on:

Tuesday January 30, 2007. One of my favorite lymph doctors, Kathleen Francis is going to be the speaker.

January Topic: Lymphedema Research

Guest Speaker: Kathleen Francis, MD (bio)

Email Questions to: KFrancis@SBHCS.com (Subject: PLAN Forum Jan 07)

Conference Call: Tuesday, January 30, 2007 at 3:00 pm PST

Mark your calenders

Pat O'Connor

Training in vascular medicine for vascular surgeons-what is it and how will we accomplish it?

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

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

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

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

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
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From: Pat O’Connor

Lymphedema People

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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

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