| | | National Lymphedema Network
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| | Lymph e-Channel vol. 12 | February 2014
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Patients: We want to share your stories!Don't forget to send us a short paragraph of your experiences with lymphedema and a picture for us to publish! All submissions should go to robin@lymphnet.org.
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 NLN's Support Community
Looking to correspond with others who have lymphedema? Look no further than the NLN Lymphedema Support Community sponsored by inspire.com
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| | | | Welcome to Lymph e-Channel Dear Friends of the NLN, The title of Don Mueller's piece, "Challenges of Head and Neck Lymphedema" says it all. Even today, there are very few LE therapists who know how to treat this challenging condition. Too frequently the NLN receives calls from desperate patients or family members with H & N swelling and accompanying symptoms. Patients often have to travel out of state to find a qualified H & N therapist. The good thing is that appropriate treatment by a certified H & N LE therapist does work. Mr. Mueller's perspective is a great example and he provides us with a heartwarming testimonial. Be patient and listen to your therapist. His words will encourage many other patients. Leila Little and Brad Smith, both speech pathologists and certified LE therapists with exceptional experience in treating this patient population, are sharing their insight and knowledge about how to properly treat these patients. The MD Anderson team has been, and continues to be, a valuable resource for patients. Another knowledgeable and dedicated therapist is Carol Johnson. Carol and her team have spent many hours in researching and designing effective and comfortable garments for patients with H & N edema. She is a fantastic resource and I encourage you to contact her with any questions. The NLN staff and I hope that you continue to benefit from e-Channel, we love to hear from you, please share your stories, even if it is not positive. We continue to learn from each other. Kind Regards Saskia R.J.Thiadens, RN and Staff |
Challenges of Head and Neck Lymphedema: A Patient Perspective by: Don Mueller, Houston, Texas "That's crazy. It will never work." Words to this effect were my first reaction to the lymphedema treatment protocol that had just been explained to me. I had made it through a year of major surgeries, radiation, chemo, and various post-treatment problems in a battle with cancer in my mouth and left mandible. Things were slowly improving in my overall stamina and ability to function somewhat normally, but I still had "issues" (don't we all!) I was working with a therapist at the MD Anderson Cancer Center in Houston, trying to improve my swallowing and speech function. At the end of one session, it was suggested that I should visit with one of their therapists who specializes in head and neck lymphedema treatment to work on my fairly significant (but typical for what I'd been through) case of lymphedema in my neck and jaw area. I was scheduled for a visit with the lymphedema therapist. Just short of a year from that point, I have achieved a significant improvement in both my lymphedema condition and my appearance. My first observation to those who may be facing this same challenge is to have faith in what the professionals tell you. They know what they are doing and, in my experience, are realistic in their assessments of what is or is not possible. Ask if some "before" and "after" pictures of other patients are available; they are very helpful in showing what can be accomplished and in inspiring you to take on the challenge. Another closely related suggestion, and it's easier to say than do, is to be patient. Don't expect rapid improvements, but instead work at being satisfied with very slow and steady progress. I try to avoid paying attention to what things look like on a day-to-day basis. That may or may not work for you. Try not to get discouraged just because you've done those exercises for a week or even a month and nothing much has changed. Time will tell. The biggest practical challenge for the type of regimen I had to undergo is simply finding the time each and every day to do it. In short, my program involved application of a compression pad, massage exercises, and wearing a mask over my entire head. All of this would take roughly three and a half hours each day. And, with that mask on for at least two hours, one couldn't just walk around the neighborhood or go to the grocery store. Try to find a way to make the time productive (watch TV, read, nap, do computer work). That will also make the time go faster. I recommend finding a time of the day that works best for you and fits in with those other things you need or want to do in your daily life. I had no trouble sleeping with the head mask on, so wearing it to bed at night was a good option. Being flexible is also helpful. If you cannot do your routine at the usual time because of a commitment or something else you want to do, like travel or socializing, try to find another way to work it in. You might be surprised what you can come up with. In other words. the program should not dictate your lifestyle. Keeping a sense of humor about the whole situation will also help keep things in perspective. I found that being consistent and persistent paid off. I encourage you to commit yourself to doing the drudge work each and every day as best you can. I am fairly good at this, probably missing only one or at most two days each month even when I am traveling or have a schedule full of doctor appointments. It is not easy, but if you miss a day for some reason, don't fret about it. Enjoy the break, but it is not good to make that a habit! |
Head and Neck Lymphedema Head and neck lymphedema (HNL) is swelling that affects the regions of the neck, face, and/or oral cavity and occurs in approximately half the patients who receive radiation treatment and/or surgery for head and neck cancer.(1) Head and neck cancer makes up 3-5% of all cancers,(2) making HNL a less common occurrence than lymphedema of the extremities.(3) Although similar, there are key differences in the presentation and management of each. Lymphedema in any part of the body can cause disfigurement. However, HNL affects not only physical appearance, but also swallowing, respiration, and vision in extreme cases. In fact, data from MD Anderson Cancer Center shows that over 1/3 of patients complain of functional problems, 2/3 of which affect swallowing.(4) Probably because of the effects of gravity, HNL is typically worse in the morning and improves throughout the day, unlike extremity lymphedema that is often better in the morning and worse at night. A distinction of HNL may be appreciable but non-pitting edema,(5) as well as the soft, pitting edema that is common in patients with extremity lymphedema. Perhpas because of its decreased incidence and limited data, not every lymphedema therapist is familiar with managing HNL. As a result, fewer resources are available for HNL patients compared to those available to other lymphedema patients. A lymphedema diagnosis must be made by a physician before therapy can be provided, since not all swelling is lymphedema. A lymphedema therapist will perform a thorough evaluation to ensure treatment benefit, rule out contraindications, establish a baseline, and develop a treatment plan for post-treatment comparison. Comprehensive evaluation should include photographic documentation and tape measurements of lymphedematous areas.(5) Complete Decongestive Therapy (CDT) remains the gold-standard for treatment of lymphedema and comprises manual lymph drainage (MLD), compression, skin care, and gentle exercise. A unique feature of HNL treatment is the addition of targeted exercises, usually for swallowing, because of the impact of HNL on function. The treatment for HNL parallels that of extremity lymphedema but is applied differently. MLD is a gentle skin mobilization technique that redirects lymph fluid from one part of the body to another. In HNL patients, fluid is directed away from the swollen neck or face towards healthy axillary lymph nodes in the armpit. In patients who have little scarring, the MLD pathway is simple and direct: from the face to the sides of the neck, upper chest, and subsequently, the armpits. However, an alternate, perhaps more complex MLD pathway may be required when there is significant scarring. Compression is an essential component of treatment for HNL, but it should never be used in the head and neck region without the expertise of a skilled HNL therapist, as there are vital structures, such as the trachea and carotid arteries among others, that should not be compressed tightly. Compression may include face masks, chin straps, or bandaging; however, circumferential wrapping of the neck should be avoided. The addition of softening compression before MLD is specifically used for patients with HNL who rarely need to wear compression garments 24 hours a day, an advantage over the treatment of extremity lymphedema that patients are happy to avoid. CDT may be performed by a lymphedema therapist or in a self-administered home treatment program after proper training. An encouraging finding from our recent investigations(4) shows that many patients with HNL who do not receive outpatient CDT benefit from self-administered home-treatment programs. We are hopeful that future research will help identify those patients who are at risk for HNL before their treatment begins so that the development of HNL is avoided. In patients with HNL, future research is needed to help identify the treatment techniques and patient characteristics that will sustain long-lasting treatment benefit without further intervention. Citations: - Büntzel J, Glatzel M, Mücke R, Micke O, Bruns F. (2007). Influence of amifostine on late radiation-toxicity in head and neck cancer-a follow-up study. Anticancer Res, 27(4A),1953-6
- American Cancer Society. Cancer Facts & Figures 2013. Atlanta: American Cancer Society; 2013.
- Petrek, J.A. & Heelan, M.C. (1998). Incidence of breast carcinoma-related lymphedema. Supplement to Cancer, 83 (12).
- Smith, B.G., Hutcheson, K.A., Little, L.G., Rosenthal, D.I., Lai, S.Y., Skoracki, R.J., & Lewin, J.S. Management of lymphedema in patients with head and neck cancer. Poster presentation. American Head and Neck Society Annual Meeting, Orlando, FL, April 11, 2013.
- Smith BG, Lewin JS. Lymphedema management in head and neck cancer. Curr Opin Otolaryngol Head Neck Surg. 2010 Jun;18(3),153-8.
Authors: Leila Green Little, MS, CCC-SLP, CLT Speech Pathologist and Certified Lymphedema Therapist University of Texas MD Anderson Cancer Center Brad Smith, MS, CCC-SLP, CLT Senior Speech Pathologist and Certified Lymphedema Therapist University of Texas MD Anderson Cancer Center Jan Lewin, PhD, CCC-SLP Professor, Department of Head and Neck Surgery Section Chief, Speech Pathology and Audiology University of Texas MD Anderson Cancer Center |
 JoviPak Head and Neck Garments
by: Carol L. Johnson OTR/L, CLT-LANA
The JoViPak Head and Neck Garments were born out of necessity by this therapist, a seasoned Occupational Therapist and a Certified Lymphedema Therapist. I had been designing and making garments for the burn and lymphedema population for many years. Prior to joining the JoViPak design team, I tried various garment systems with only marginal results for my H&N lymphedema patients. I wanted to develop garments that would effectively address swelling and lymphedema and also address the common issues associated with wearing compression on the head and neck. These garments must provide a safe therapeutic level of compression, be tolerated by the skin, be fully adjustable, allow for independence in donning/doffing, be affordable, and be washable and dry-able. Head and neck garments are notoriously one of the most difficult garments for patients to accept into their lymphedema management "toolbox." For these garments to be effective, it is essential that a patient establishes a consistent wearing pattern, be comfortable while wearing it, and understands and accepts the recommended schedule of use. Claustrophobia is a very common complaint of garments around or over the face. Patients often find that they can't breath, they feel trapped, or they become too hot, and these symptoms prevent compliance in wearing head and neck garments. There is also the awareness that anything covering the face can cause others around them to be fearful, a real deterrent to wearing a face mask. There is also a cosmetic aversion to wearing a face mask because it prevents recognition by others and patients report feeling self-conscious. Our team analyzed the options that were available and then worked steadily to develop the design, keeping in mind the typical failures of compliance. Knowing the typical distribution of swelling that followed the various types of head and neck dissection and radiation lead to the current design of the garments. Together with the pattern maker, the seamstresses, and myself, we developed the head and neck products from the basic foundation garment, the Chin Strap. As a therapist, I have always adhered the premise that "Less is Best." We want to  support an area that is problematic and add no more than is necessary. There is almost always an area of swelling in the neck, therefore the neck closure allows the patient to adjust the compression for comfort and provide tolerable therapeutic benefit. (Care must be taken when fitting the garments that patients do no over tighten the garments so as to impede the delicate carotid arteries and jugular veins.) When the lymphatic drainage system is disrupted in the head and neck, the challenge is to therapeutically direct the fluid to alternate drainage pathways, and because the more common dissection and radiation is to the lateral neck, the channels were carefully selected to direct drainage toward the uninvolved posterior or spinal watersheds. The closure at the top of the head, allows the patient to adjust the compression for comfort over the mandible and the lateral face, which will promote and enhance the effect of the channels and "Resilient Foam Technology." The recommended wearing schedule is during the night, or during periods of rest, when patients can privately comply and adjust to the garment, without having to deal with the social stigma of a mask.  Adhering to the above principles, the half-face and full-face masks were developed to address those areas of the face that are also commonly involved with more severe lymphedema of the face. Keeping in mind that when part or all of the face is covered, the design allows the patient a "safety-valve" to "become free at will" when necessary and yet lets the base garment remain in place. The half face mask is designed with full padding in half of the face. The Full-Face Mask is designed without any padding, allowing the therapist to "customize" the garment in their clinic, with or without their own choice of pads or padding. Additional padding may be necessary to more effectively address fibrosis under  the compression of the Chin Straps or Full Face masks. Specially designed "contoured" neck pads, a Universal Neck Pad and a Peri-Auricular Neck pad, can be inserted into the neck pocket of the garments. The Universal Neck pad is an insert pad for the Standard Chin Strap or Full Face Mask when edema of the neck extends into the mandible and the anterior ear. The Peri-Auricular Neck Pad is an insert pad for the Extended Neck pad or Full Face Mask when there is swelling of the mandible and the posterior ear or both the anterior AND posterior ear. An Eye pad is appropriately added for the Full Face Mask when swelling extends to the cheek(s) and orbit of the eye. Stitched channels encourage drainage to the pre-auricular lymph nodes, and stitching over the eyeball prevents pressure to the delicate structures of the eye. As a lymphedema therapist/garment designer, it is a true joy to be able to put effective tools into a therapist's and patient's "tool box." My experience is that these garments are comfortable, easy for a patient to wear at night while in the privacy of their home, and provide an economical solution to head and neck edema. Our patients' quality of life can be improved, helping them step closer to a life with their lymphedema under control. |
| | National Lymphedema Network, Inc.
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
Hotline: 1.800.541.3259
Tel: 415.908.3681
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The inclusion of advertising, logos or Web site links within this electronic publication does not constitute an endorsement by the National Lymphedema Network, Inc. of the products or services so advertised.
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