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What is the Gold Standard Treatment for lymphoedema

What is the “Gold Standard Treatment” for lymphoedema?

Written by: Siobhan O’ Reilly Bracken MISCP MPA MSc CLT PINC

Updated: February 2018  Email: oreillyphysio@gmail.com  Ph: 087 744 8782

Complete Decongestive Therapy or CDT is the “Gold Standard” for lymphoedema treatment. CDT consists of two distinct phases. Phase 1 when the Certified Lymphoedema Therapist (CLT) reduces the size of the limb and improves the skin. Phase 2 is when the patient is able to do their own treatment well enough to maintain the reduction achieved in Phase 1 and incorporate it into their daily lives, for their lifetime.

What are the side-effects of CDT?

CDT is a both a safe and effective treatment.

What are the results and benefits of CDT? 

  1. Less swelling in the swollen limb.
  2. Improved lymph drainage
  3. Improved skin condition
  4. Less pain, stiffness and easier movement.
  5. Less cellulitis episodes and antibiotic use.
  6. Independence in activities of daily living (ADLs)
  7. Ability to participate in age appropriate activities
  8. Improved well-being and quality of life.

What exactly is CDT?

There are several components in both Phases 1 and in Phase 2 of CDT that together form the “gold standard” treatment to yield the desired results over the long term.

Components of Phase 1:

  1. Manual lymph drainage or MLD
  2. Multi-layer, short-stretch bandaging.
  3. Drainage exercises
  4. Meticulous skin and nail care.
  5. Compression garments
  6. Patient education in self-care.

Primary leg lymphedema (1) Primary leg lymphedema (2)

Why is Phase I called the “intensive” phase? 

Optimally, a lymphoedema limb may be bandaged daily for five days of the week for up to 2-8 weeks. This means daily therapy and daily bandaging for several weeks without interruption and so the label “intensive”. Patients may need both psychological and logistical support to get through the phase especially when it’s their first time. For example, a patient may still be recovering from their cancer diagnosis and treatment and must now cope with their new lymphoedema diagnosis. Supportive family and employers are also key as the patient needs time off from their other responsibilities. Others may need logistical support with transportation and activities of daily living (ADLs) e.g. food shopping, child care, house work etc.

Why is daily CDT optimal?

With each bandaging, the excess fluid moves up out of the limb to the regional lymph nodes at the pelvis or the armpit reducing the size of the limb. The bandages loosen as the limb shrinks. Daily re-bandaging will keep a consistent gentle pressure on the lymphatic vessels, maintaining the flow up and out of the limb. Ultimately, daily bandaging helps the patient reach their plateau point sooner and reduces their length of time in bandages.

Multilayer bandaging of primary leg lymphedema (1) Multilayer bandaging of primary leg lymphedema (2)

Are there specialised INPATIENT lymphoedema centres within the EU?

Yes, patients who cannot access the standard of care locally, may decide to go to the specialised inpatient centres in the EU for phase 1 of their CDT. Before they do go, it is recommended that the referring consultant, request the Klinic, send the patient home with a discharge summary in English and that the patient has a Certified Lymphoedema Therapist lined up to support them through Phase 2 and to monitor their progress. For information on availability and cost see:

How many days and weeks does Phase 1 take and when does treatment stop?

The patient wears the multilayer bandages day and night. After waking each morning they remove their bandages at home, shower, moisturise their skin, have breakfast and return to the clinic for their next treatment. Treatment includes, MLD, drainage exercising, education and re-bandaging. It’s repeated daily until the changes in limb size plateau. During these sessions the patient may be prepared and educated in self-management during Phase 2.

Once the reduction is complete the limb is measured for 2 sets of compression garments (so they can wash one and wear one). Custom made flat knit garments are an excellent choice and will need to be replaced every 4-6 months when the latex no longer provides the correct amount of compression to maintain the reduction.

What skills can patients learn for Phase 2

        1. Self-Manual Lymph Drainage (S-MLD).
        2. Lymphatic exercises e.g. (a) at home (b) in the pool
        3. Meticulous skin and nail care
        4. Compression therapy e.g. (a) Self-bandaging (b) Compression garments (c) Garments with Velcro (d) Pneumatic pumps.

Is medical monitoring useful and how often should a patient be monitored? 

As with all chronic conditions, patient’s long term success will benefit from monitoring by their medical team and therapists to ensure that they have the support and advise they need. For example, compression garments and equipment suffer from wear and tear and need to be routinely checked for safe and effective use. Patient’s themselves change over the years and their self-care skills may need to be updated and modified so they remain appropriate. The medical team will monitor changes in the patient over time to guide their clinical decision making and recommendations, for example, they may monitor:

(a) Resting respiratory and heart rates, blood pressure and body temperature.

(b) Limb size or limb volume.

(c) Skin and nail condition.

(d) Body weight and or Body Mass Index (BMI).

(e) Pain intensity and location.

(f) Range of motion (ROM) of the affected upper or lower limb joints.

(g) Manual muscle test (MMT) of the affected upper or lower limb.

(h) Functional capacity testing to assess independence in Activities of Daily Living.

(i) Psychological screen to asses mental health status.

If you have comments or questions please contact Siobhan at oreillyphysio@gamil.com

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Lymphedema Air-travel and Vacation Tips  

Lymphedema Air-travel and Vacation tips

By Siobhan O’ Reilly Bracken Chartered Physiotherapist (MISCP) and Certified Lymphedema Therapist (CLT) www.theoreillycentre.ie Ph: 087 744 8782.

There is nothing quite like a wonderful holiday to chase the blues away and we in Ireland are spoiled for choice. This article deals with lymphedema, airline travel and vacation challenges, so you may learn how to reduce your risk of developing lymphedema, or minimise your risk of flare ups. Lymphedema is the accumulation of protein-rich fluid in tissues with inadequate lymphatic drainage. It is a chronic and progressive condition without a cure. As with all chronic conditions successful self-management is the key to you leading a full and active life.

The information in this article is filled with practical information and tips relevant to vacationing with lymphedema to help you may make good decisions quickly.

I have combined recommendations from the National Lymphedema Network (lymphnet.org)  position papers “Lymphedema risk reduction practices” and “Healthy habits for people at risk for lymphedema”, I also reviewed the latest research on flying and finally added in some practical tips shared by my patients.

Individualized risk-reduction practices

No two lymphedema patients are the same. Each person is unique and because lymphedema may be caused by many different factors, each person with lymphedema or each person who is at risk for lymphedema is advised to have their risk-reduction practices individualized. Before you travel, talk with your lymphedema professional to figure out what your risks are and what will work best for you.

First know “the conditions most favourable to lymph flow”.

Lymph flow is facilitated by several key factors including:

  1. An intact and robust lymphatic system.
  2. A well-rested and hydrated body.
  3. Intact meticulously clean and healthy skin and nails.
  4. Lean active pumping muscles.
  5. A normal body mass index (BMI).
  6. Well-functioning unrestricted lungs and breathing movements.

Flying and lymphedema.

Air travel today is safer and more affordable than ever. You may be golfing in sunny Spain in the summer or skiing in Chamonix in the winter. It both cases you will be flying. Airline travel is associated with conditions that challenge our anatomy and physiology and contribute to swelling. For example, your flight may include;

  1. You may arrive tired after a sleepless night getting packed.
  2. You may arrive tired because it was an early take-off time.
  3. There may be crowds at check-in and at security which could mean long slow queues and lots of standing around.
  4. During the flight, you may be sitting inactive for several hours, with seat belts around your middle, in a tight seat.
  5. Flight cabin pressure is similar to altitudes of 6,000 and 8,000 feet. As altitude increases compressive pressure on veins and lymph vessels decreases which may slow the flow of blood in the veins and lymph fluid in the lymph vessels.
  6. At these altitudes air is drier and less dense with oxygen which may cause you to feel dehydrated and drowsy.
  7. The compounding effects of prolonged standing, prolonged inactivity, seats and belts, dehydration, drowsiness plus the cabin pressure may contribute to reduced flow and stasis of the body’s blood and lymphatic fluids and may cause swelling particularly in the lower body, ankles and feet.

Tips for lymphedema and flying.

Plan ahead and use the help airports offer.

  • Arrive at the airport well rested and in good time to avoid stress and delays.
  • Book a wheelchair to reduce standing time.
  • Procure a credit card with an airline partnership so you can check in promptly at the business desk
  • Check-in online with carry-on luggage.
  • Ask the flight attendant for assistance to store the luggage in the overhead bin for you and avoid straining any recent chest surgery or radiation.

Hydrate

  • Sip water and plenty of it.
  • Avoid sweet drinks, caffeinated drinks and alcohol during your flight.
  • Buy 2-3 bottles of water in duty free so you do not have to wait for a busy flight attendant during the flight.

Move around.

  • Book an aisle seat.
  • Keep your lymphedema limb on the outside and move it freely.
  • Sleep on the other arm.
  • Relax the limb and encourage flow by opening up the angles at the hip, knee and ankle for the leg or at the shoulder, elbow, wrist and fingers in the arm.
  • Move around the plane.
  • Slip between the section dividers, do ankle pumps and hip extensions to pump the lymph fluid past the hips and knees towards your heart and lungs.
  • Finally, sipping water throughout the flight will also make you need the bathroom more than your fellow passengers and an aisle seat will help you avoid disturbing them.

On holiday with lymphedema

Bug bites and mosquitos.

  • Bites cause local pain and inflammation, itching and scratching. Bites and scratching can lead to cellulitis as they open skin and let bacteria in. Lymphedema is a high protein oedema which bacteria will consume and rapidly multiply, spreading the infection.

Sunburns

  • A certain amount of sun is good for us however too much may cause pain, inflammation and swelling over large sections of your body and increase the burden on a compromised lymphedema limb.

Extreme of low or high temperatures

  • Whether it is a sunny or snowy vacation, you may be exposed to extremes of temperatures. High and low temperatures also exist at different times of the day. Extremes of temperatures challenge the circulatory and lymphatic systems and prolonged exposure increases the challenge.
  • Figure out the time of day best for you.
  • Limit Jacuzzis and hot-tubs to less than 15 minutes.

Dehydration

  • Depending on the location, its temperature, its altitude, the amount of activity you are doing and the time of day you are doing it, you may need to drink more a lot water to meet your needs and avoid dehydration and a feeling of heaviness in the limb.
  • A well hydrated body’s urine is a lighter shade of gold and easily observed.

Over-use injuries and lymphedema

  • Golf and tennis players love to play longer and more frequently when on vacation which is often a lot more than at home.
  • Overuse injuries may cause pain and swelling and even cellulitis in a lymphedema limb.

Tips for lymphedema on vacation.

Pack a location specific first-aid kit.

When you come prepared you may quickly apply the right remedy. Items may include:

  • Light back pack to carry the kit
  • A water bottle
  • A sun hat
  • Long sleeved high collared shirts to keep lymphedema arms cool and sun protected
  • Light loose pants to keep lymphedema legs cool and sun protected
  • Waterproof sandals or flip-flops to wear poolside and on the beach to protect feet from injury and infection.
  • UV and Jelly fish sting protection leggings ecostinger.com
  • Sunscreen cream for sunny and snowy vacations.
  • Sunburn cream for sunny and snowy vacations
  • Wipes and plasters
  • Mosquito repellent spray
  • A tube anti-itch/anti-inflammatory cream
  • Anti-histamine tablets
  • A tube of anti-bacterial cream
  • A filled prescription of antibiotics

The OReilly Centre Travelling Tips - Penicillin

Know your numbers.

  • Before you travel know your baseline data points so you can pick up and respond to changes in:
  • Size
  • Sensation
  • Colour
  • Temperature
  • Skin condition.
  • Your lymphedema professional may assist you in getting to know your baselines and how to track and respond to changes.

Cellulitis signs and symptoms

Mosquito bites, painful sunburns, inflammation or injury to your lymphedema limb may result in a flare up or even a cellulitis infection in that limb on vacation. Cellulitis is an urgent medical situation. The signs and symptoms of cellulitis skin infection in an area of impaired lymph drainage may include:

  • A feeling of overall illness or flu-like symptoms
  • Redness, warmth, pain, fever
  • Cellulitis episodes may lead to worsening lymphedema. When addressed early the doctor or emergency room nurse will treat cellulitis with oral antibiotics, when its advanced intravenous antibiotics may be needed and/or a hospital stay

The OReilly Centre Travelling Tips - Managing Cellulitis

Managing cellulitis on vacation

  • Pack a filled prescription of antibiotics.
  • Know the contact details of a local GP at your vacation place
  • Know the address and directions to the local hospital.
  • Finally, when you return home after a cellulitis infection, see your lymphedema professional to determine if you need a new course of therapy or a new garment as the limb measurements may have changed.

Book a hotel with a pool.

Holidays may offer a variety of exercise options. Fortunately, water based exercise is often accessible. Hydrostatic pressure increases as you go deeper into the pool or ocean. At 1 metre, it is 70mmHg of pressure on the feet, when compression garments exert between 20 and 40mmHg of pressure. Hydrostatic pressure affects our anatomy and physiology in the opposite way to altitude pressure. The increased pressure on the submerged limbs acts like a comfortable compression garment that’s comfortable. This facilitates lymph flow and eases swelling in the extremities. Lymphedema loves water based exercise, when possible book a hotel with a pool or source the local pool.

Air travel, lymphedema and compression garments.

If you have lymphedema, The National Lymphedema Network (lymphnet.org) recommends:

“That people with a confirmed diagnosis of lymphedema wear properly fitting compression garments for air travel”.

The airline and vacation tips listed above all apply to reduce your risk of a flare-up when on vacation; arrive on-time and rested, ask for assistance when needed, hydrate, book an aisle seat so you may move around as often as you wish.

If you are at risk for lymphedema

If you have had cancer treatment involving the lymphatic system and don’t have lymphedema but are at some risk of developing swelling, please know that the decision to wear a compression garment during air travel is controversial.

The controversy regarding compression garments during air-travel.

The studies that have been done on compression and prophylaxis are limited and they reached different conclusions that lymphedema is caused or worsened by air travel. One study showed that physically fit women on their way to a competition, who were at risk for breast cancer-related lymphedema had no increase in swelling from air travel. Another study showed that prophylactic compression had the potential to make swelling worse. Because additional research is needed to guide us, The National Lymphedema Network position at this time is:

People at risk for lymphedema who decide to wear prophylactic compression on airplanes should work with an experienced garment fitter and should not self- purchase a garment”.

If, however you choose to go ahead and wear a prophylactic compression garment on an airplane, they advise you wear the garment several times prior to air travel to make sure the garment fits well and has no areas of constriction. If, while wearing a garment on an airplane, the swelling increases or the garment constricts, remove it immediately.

In summary, when you are flying on vacation, plan ahead, know your risks and your data points so you can monitor for changes and quickly manage the common challenges associated with air-travel and holiday destinations. When possible, work with your lymphedema professional to get to know your numbers and your individual risk profile. Prepare well so you are confident and calm and well able to self-manage your lymphedema or risks in the different locations. I trust you found this article helpful and I look forward to reading your comments or questions. Contact me via email at oreillyphysio@gmail.com or by phone Siobhan 087 744 8782.

 


Upcoming Courses October and November 2016

The courses on October 22nd and November 6th 2016 are funded by the HSE and as such Chartered Physiotherapists based in the Ireland’s publically funded hospitals have priority access. The course contact is Cora Wymberry corawymberry@rcsi.ie

Breast Cancer for Physiotherapists

Course Director: Siobhan O’ Reilly Bracken MISCP PT MPA MSc CLT – www.theoreillycentre.ie

Location: Dublin

Date: Saturday October 22nd 2016

Time: 8.30am to 6pm

Venue: School of Physiotherapy, Health Science Building, UCD.

Course contact: Cora Wymberry corawymberry@rcsi.ie

Status: SOLD OUT

Breast Cancer for Physiotherapists

Course Director: Siobhan O’ Reilly Bracken MISCP PT MPA MSc CLT – www.theoreillycentre.ie

Location: Cork

Date: Saturday November 6th 2016

Time: 8.30am to 6pm.

Course contact: Cora Wymberry corawymberry@rcsi.ie

Status: as of 22nd of September there are 4 places remaining.