Primary Lymphoedema Videos

These are two vidoes I found from people living with primary Lymphedema… Both show the importance of assessment and treatment to stop their legs becoming worse and worse.. Every health fund in every country should cover patients for primary and secondary Lymphedema, everyone deserves to have access to treatment. Without treatment people cannot continue with their day-to-day activities.. Lymphedema is no different from any other illness so why is it misunderstood and incorrectly diagnosed. Lymphedema deserves a voice!!

Why Blog?

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I have been thinking for the last few days why it is that one starts a blog. With today’s technology we can share our deepest secrets with the whole world. Expose ourselves to scrutiny and comment in a way that one never would in real life. I can’t imagine walking down the street and flashing my legs at everyone, yet in my blog I post photos for everyone to see!! Others share even more intimate pictures in the name of education. So why do we do it? What does it achieve for ourselves and others?

Some people write about all aspects of their lives, nothing is sacred, this I find hard to understand!! Why do people need to tell the world about their entire life!! Is it seeking that elusive 15 minutes of fame, is it to make money or is it just because you can!!

Others create a blog to build a business or promote their wares. In fact today every business has to have exposure of some sort on the Internet, or be lost in the wilderness of non-existence! These days you can have a little shop on the corner but sell your product to the world…

So this came back to me and why I started a blog. Prior to my surgery I would have liked more information from people who had a Lymph node transfer to the leg, but was unable to find anyone to talk to. This started me thinking that if I did not write about my experience my story would be lost. Maybe if I shared my journey it would help and educate others who may consider following the same path. I also felt that Lymphoedema has such a low profile, others needed to understand what it was like to live with everyday. A blog also allowed me to gather resources to share, all in one place. The bonus that I had not considered was “meeting” other “Lymphies”. This for me has been the best reason for starting a blog, the world has shrunk, I can now share with those who really understand how I feel. There have been times when writing my blog has helped me mentally, allowed me to push out through the darkness, filled my time when I could not do much else. A friend once told me there were other blogs about LNT but they seemed to stop after the surgery, so I am determined to keep going, while we wait for nodes to grow!!

Why blog? I say why not blog, share, educate and “meet” others. Thank you to all my fellow bloggers, I have enjoyed all your stories, I feel I have made some cyber friends and we have made the world a smaller place. We have shared our knowledge and educated others to help those who follow in our footsteps.

So I ask my fellow bloggers… Why do you blog???
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You have to fuel the happiness tank!!

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Sometimes we can get so focused on our Lymphoedema, or other issues, that we need to take some time out to focus on the positive aspects of our lives. Today I am off for a walk in the sunshine, camera in tow, to focus on what nature has to offer. What will you do today to fuel the happiness tank???? Have a good weekend…..

Reflecting! Am I Crazy!!!

I thought that I would reblog this, as due to the nature of blogs, which work newest to oldest many followers have missed the start of the journey.. For those who have been there from the start you can skip this one!!… Am I crazy doing this??? Still do not know the answer to that but ask me in another year!!! Well I could know more when I have new scans etc in September.. .. I love your comments and the emails and have “met” so many wonderful people since starting this blog.. A bonus I did not expect…

My Lymph Node Transplant

imageJust over two weeks till I have my Lymph node transplant, on the 14th March, so now starts the count down!! Today I have found myself reflecting on what has led me to this. Why would I choose to have major surgery which is still in its infancy? I have been remembering the last time I had major surgery, that time a choice was not given.

I was told over the phone that I had Cancer of the Uterus, on October 19th 2001, an appointment had been made for me with a surgeon at Royal Women’s Hospital in Sydney. This diagnosis came like a bolt from the blue, totally unexpected. I had been having problems but the word Cancer had never been mentioned prior to this. Suddenly I was in hospital having a Radical Hysterectomy including the removal of Lymph Nodes. Cancer was found in one node so there followed…

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Precautions to lower the risk of Lymphedema after cancer treatment.

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http://www.cancer.org/

American Cancer Society

American Cancer Society (Photo credit: Wikipedia)

During surgery for various cancers Lymph nodes may be removed and radiation given. This leaves the effected limb at risk of Lymphedema. Myself I have one leg with Lymphedema and one at risk, as Lymph nodes were removed on both sides followed by radiation. I therefore treat the at risk limb with great “respect” to protect it from Lymphedema. Once Lymphedema starts that is it, there is no going back, so if there is a way to stop it starting I encourage you to use it!! I thought this article from the American Cancer Society gave very good advice,  a great deal of which is important for limbs which are at risk or which have Lymphedema…taking these precautions may also stop your Lymphedema worsening.

“For people at risk of Lymphedema

At this time there are no scientific studies to show that lymphedema can be prevented. Still, most experts say following these basic steps might lower your risk of lymphedema, delay its onset, or reduce its impact.

Get regular medical check-ups.
Regular check-ups should include screening for lymphedema. If you’ve been recording measurements of the affected part of your body, this may be part of the check-up. Talk to your health care team about how often you should be checked.


Report changes.
After surgery and/or radiation, you will learn how the affected part of your body normally feels. Any changes in size, color, temperature, feeling, or skin condition should be reported to your doctor right away.
Try to get to and/or stay at a healthy weight.
We know that obese people are at higher risk for lymphedema. Talk to your health care team about what a healthy weight is for you, and get their advice on how to get to or stay at that weight.


Exercise.
It’s important to use the part of your body that’s been affected by cancer for normal, everyday activities to help you heal properly and regain strength. Using your muscles also helps the lymph fluid drain like it should.
Certain types of exercise can reduce your lymphedema risk, too, and some exercises can make lymphedema better after it starts. If you’ve had surgery or radiation treatment, ask your doctor or nurse when you can start to exercise and what type of exercises you can do. Avoiding exercise and allowing your body to get out of shape may lead to lymphedema and episodes of swelling that are sometimes called flare-ups.
But keep in mind that some kinds of exercise can increase your risk of lymphedema or make lymphedema worse if you already have it. Overuse, which can result in injury, has also been linked with the start of lymphedema in some people. Work with a well-trained fitness or health professional to design a program that’s right for you and starts at a low level of intensity and progresses slowly to avoid overuse.
Follow these tips for exercising safely:
• Use your affected body part as normally as you can. Once you are fully healed, about 4 to 6 weeks after surgery or radiation treatment, you can begin to go back to the activities you did before your surgery. But check with your doctor first.
• Exercise regularly, but try not to over-tire yourself. Before starting any exercises, talk with your doctor, nurse, or physical therapist. They can help you set goals and limits so that you can work at the level of activity that’s right for you.
• If the affected part of your body starts to ache or swell, lie down and raise it above the level of your heart.
• Avoid repetitive overuse of the affected body part. Sudden increases in how long or hard you work out might trigger or worsen lymphedema.
• Any exercise program should be started gradually, increased cautiously, and stopped if you have pain, more swelling, or other discomfort. Talk with your doctor if you have any of these problems. If they continue, ask about being referred to a lymphedema specialist.


Use of compression garments
Compression garments are fitted sleeves or stockings that can help control lymphedema. They can help prevent and reduce swelling by moving lymph fluid from the arm or leg back into the body. Careful fitting is needed and you should follow your health care professional’s advice on use and care of the garment.
Compression garments are most often used by people who already have lymphedema. But if you are at risk for lymphedema, you might want to use one to lower your risk in certain high-risk situations. For instance, lymphedema has been linked with air travel, possibly because of air pressure changes. But there are pros and cons to using a compression garment on long or frequent flights. Ask your doctor or therapist if you should be fitted for a garment to wear during air travel.
Do not use a poorly-fitting compression garment under any circumstances, as this may increase risk for lymphedema or make it worse if you already have lymphedema.
You usually do not need a compression garment to prevent lymphedema during exercise. But if you’ve noticed swelling while exercising, talk to your doctor or therapist.


Try to avoid infections, burns, and injuries.
Your body responds to infection, burn, or injury by sending extra fluid and white blood cells to the area. If lymph nodes and vessels are missing or damaged, it’s harder for your body to move this extra fluid, which can trigger or worsen lymphedema.
Some basic precautions, good hygiene and careful skin care may reduce the risk of lymphedema by helping you avoid infections, burns, and injuries. Follow these tips to help you care for the part of your body that had surgery and/or radiation:
• Keep the affected area clean. Careful skin care can help you prevent infections.
• Keep your hands, feet, and cuticles soft and moist by regularly using moisturizing lotion or cream. This will help keep your skin from chapping or cracking. Push your cuticles back with a cuticle stick while they are soft (after a bath) rather than cutting them with scissors. Try not to pick at or bite your cuticles.
• Clean and protect any openings in your skin caused by cuts, scrapes, scratches, bug bites, hangnails, or torn cuticles. See “How to care for cuts, scratches, or burns” in the section “Take care of yourself.”
• Watch for early signs of infection, like pus coming from a cut or scrape, rash, red blotches or streaks, swelling, increased heat, tenderness, chills, or fever. Call your doctor right away if you think you have an infection.
• Be extra careful when shaving, and use a clean razor on clean skin.
• Use an insect repellent to avoid bug bites when outdoors. If a bee stings you in the affected area, clean and raise the limb, put ice on the sting, and call your doctor if there are signs of infection (see above).
• Avoid activities that irritate or chap your skin.
• Protect your body, especially treated areas, from sunburn. Use a broad spectrum sunscreen that
is labeled SPF 30 or higher, and try to stay out of the sun between 10 a.m. and 4 p.m.
• Your affected limb might not sense hot or cold as well as it did in the past. Test bath water temperatures with an unaffected limb.
• Avoid extreme temperature changes, such as heat from hot tubs and saunas. If you use a heating pad or ice pack on the affected area, limit the length of time you use it until you know how your body will respond. Both heat and cold can damage tissues and can increase fluid build-up. Some doctors may advise you to stay away from all sources of extreme temperatures.
• Protect yourself against falls, fractured bones, and serious burns.


Be aware of cellulitis.
Cellulitis is an infection in the tissues just under your skin. Signs of this problem include redness, warmth, fever, pain, and flu-like symptoms. Report this urgent medical problem to your doctor right away. See the section “Take care of yourself” for ways to help prevent infection.
Cellulitis can lead to or worsen lymphedema. In fact, if it becomes a repeated problem, suppressive antibiotics may be used to keep it under control.


If your arm is affected
• Whenever possible, have your blood drawn, IVs, and shots given in your unaffected arm. Get flu shots and vaccinations in your unaffected arm or somewhere else. Let all your health care providers know that you are at risk for lymphedema.
• Wear protective gloves with sleeves when doing household chores using harsh chemical cleansers or steel wool, when gardening or doing yard work, and when working with animals that could scratch or bite.
• Wear a thimble when sewing to cut down on needle and pin pricks.
• Use oven mitts that cover your arms instead of hot pads. Be careful when frying foods, boiling liquids, and removing food from a microwave oven.
• Keep pets’ claws trimmed to avoid getting scratched.

If your legs are affected
• Always wear well-fitting, closed shoes instead of sandals or slippers. Do not go barefoot. • Keep your feet clean and dry. Wear soft protective socks (cotton or padded types).
• Dry the creases between your toes after bathing.
• Cut toenails straight across to help prevent ingrown toenails.


Try to avoid pressure or constriction.
Constriction or squeezing of the affected body part may increase the pressure in nearby blood vessels. This can lead to increased fluid and swelling (much like water building up behind a dam). Some people have linked this to the start of lymphedema. Here are some tips to help you with this:
If your arm is affected
• Wear loose jewelry, clothing, and gloves. Do not wear anything that forms a snug band around your arm or wrist. Be sure compression garments fit well and are worn properly. Clothing and compression garments should be supportive and have smooth, even compression.
• Do not use shoulder straps when carrying briefcases and purses.
• Wear a loose-fitting bra with padded straps that do not dig into your shoulder.
• Have your blood pressure taken on the unaffected arm. If both arms are affected, blood pressure can be taken on your thigh. Or, you can ask that blood pressure be measured by someone using a hand pump and stethoscope rather than using a machine; the machines often use high pressures for a longer time.
If your legs are affected
• Avoid socks, stockings, undergarments, or pants with tight elastic bands.
• Wear shoes that fit well.
• Try not to stand or sit in one place for too long (more than 30 minutes). Do not cross your legs when sitting.
• Most people with leg lymphedema benefit from wearing a compression stocking when up and walking around. A compression stocking can help squeeze the lymph fluid through the remaining vessels before it builds up. The stocking must be well fitted to apply the right pressure while avoiding too much tightness near the top of the stocking. Ask your doctor or physical therapist if you should be fitted for a compression stocking.

You can’t change the fact that you have or are at risk for lymphedema. What you can change is how you live your life – taking good care of yourself, making healthy choices, and doing what you can to make your body and your mind feel as good as possible.”

Thank you to the American Cancer Society for this information which is very helpful http://www.cancer.org/ for more information please visit their website…

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Aquatic exercise for Lymphoedema includes Videos

In my previous post I wrote about returning to the pool and how helpful I have always found this to be. This resulted in a number of questions which I feel are answered in this article from Aqua Lymphatic Therapy. If we can find a group like this or similar it would be great, but I am not going to hold my breath for that!!! I am sure however with this guidance you can put some exercises together yourself.. Tread water, walk in water and use a buoyancy belt or noodle to help….  Join a water aerobics class…. Enjoy

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Water – is it good for lymphedema?
Aqua Lymphatic Therapy
By Dorit Tidhar
Article reprinted from the Spring/Summer 2011 issue of Lymphedema Matters, a publication of the Lymphedema Association of Ontario.

Mrs. G’s birthday is coming up and her husband decided to surprise her with a gift, a day of pampering at a spa. His wife was pleased, yet concerned. She did not know whether a spa would be safe for her lymphedema. She called her therapist for advice. “It seems as if lymphedema does not respond well to high temperatures” said Mrs. G. to her husband. Regrettably, she asked him to return the gift and he decided to buy her a swimming pool membership instead. Was he doing the right thing?

Lymphedema is defined as an abnormal accumulation of a protein-enriched fluid accompanied by chronic inflammation, due to the damage or blockage of lymphatic vessels. People with lymphedema, or at risk of developing lymphedema, should adopt strategies in order to prevent or reduce the exacerbation of lymphedema. These include avoidance of trauma or injury, intact skin preservation, avoidance of constriction, use and exercise of the body, arms and legs. On a similar note, exposure to extreme heat could be of major concern. But why? Exposure to high levels of external temperature (hot water bottles, electric blankets, hot tubs and jacuzzi) causes the capillaries in the skin to dilate; this may lead to an increase in interstitial fluid and can exacerbate existing lymphedema, or trigger the beginning of lymphedema. Therefore it is highly recommended to avoid direct heat applications on the affected area. Sauna or steam rooms do not project direct heat to the skin (heat transfer is much slower in air than in water). Nonetheless, they can cause elevation in body temperature and lead to the worsening or development of lymphedema.

A safe temperature is one that will not elevate body temperature and as a result will not cause the response of vasodilation in the skin. Is there any optimal temperature, or a “safe” temperature? A safe temperature
depends on several factors: The activity that is being performed in the water (whether it is just immersion such as sitting in the tub or swimming), the duration, and the medical condition of the person. Immersion alone is likely to be safe up to 35°C. Consequently, hot baths or jacuzzi are probably hazardous since the temperature is usually above 38°C (100.4°F). When exercising in water, the temperature should be adjusted to lower levels: 29 to 33৹C (84-91.4৹F) is considered to be safe. Importantly, when swimming or exercising in aqua fitness, the temperature of the water needs to be cooler than when one is just walking in the water.

It is important to get physician clearance before participating in any pool activity, and to check the sanitary condition of a pool. Interestingly, the bacteria that causes erysipelas (cellulitis) is not present in pool water, but is actually harbored on the skin. Intact skin preservation is of utmost importance.

Beyond safety concerns, one should ask the question: what types of exercises in water could be of benefit to lymphedema treatment?

Compression garments are generally recommended to treat lymphedema. These garments apply gradient force from higher to lower pressure. Hydrostatic pressure applies its force with an analogous mechanism to compression garments. Importantly, the pressure gradient by water exceeds the pressure gradient by compression garments. Hydrostatic pressure increases directly with the depth of water. When immersing in water, the addition of each centimeter of depth will increase the hydrostatic pressure by 0.73 mmHg (1.85 mmHg/inch). For example, the pressure on feet at a depth of 100 centimetres, would be 73 mmHg (more than a pressure applied by a class 3 compression garment). This pressure is pleasant and imperceptible. In addition, the pressure exerted on a body that is immersed in water is equal from all directions at every depth. This is of utmost importance as some parts of the body (i.e. chest, breast, genitals, ankles, wrist, fingers and toes) often do not experience equalized pressure by compression garment or by bandaging.

Lymphotome is a skin area that drains lymph fluid into regional lymph nodes. For example, the chest lymphotome drains the skin of the arm, front and back chest into the lymph nodes under the armpit. Excess lymph fluid has to pass through healthy lymphotomes and into functional lymph nodes. Immersion in water may be insufficient for treating lymphedema. Hydrostatic pressure lacks the ability to redirect the lymph fluid to healthy lymphotomes. Therefore, there is a need for supplementary exercises such as the Aqua Lymphatic Therapy (ALT) – the Tidhar method©.

ALT is based on the Casley-Smith remedial exercises and uses the same principles, yet in an aquatic environment. The method uses the anatomical principles of the lymphatic system and the force of the water to achieve the goals of lymphedema therapy. The water temperature ranges from 31°C to 33°C (78.8-91.4°F). This temperature enables slow movements in a safe way that will not cause increased swelling. The buoyancy force enables elevating of the limbs and thus performing exercises and self massage with minimal effort. The hydrostatic pressure of water increases lymph and venous flow, thereby protects the limb from swelling and reduces edema. Chronic lymphedema of the limbs can cause muscle weakness. The viscosity of water provides resistance to body movements. ALT uses different ways to minimize water resistance:

• Reducing the surface of progression (for example, in lymphedema of one arm, side walking instead of frontal plane walking)
• Moving through the water in a slow and gentle manner
• Exercising certain movements with flexed instead of stretched extremities
• Over time the resistance will promote strengthening as well.

The sequence of exercises in ALT is important. First, healthy lymphotomes are activated proximally with breathing exercises in order to clear the reservoir. Second, proximal movements of the thorax, abdomen and shoulder girdle are performed in conjunction with self-massage. Lastly, exercises are performed to clear the affected lymphotomes into the healthy ones by performing self-massage and movements that involve distant joints of the limbs (ankle, wrist etc)
ALT is usually performed in a group setting, in which people with similar conditions exercise together. Each session lasts 45 minutes. Once a week, meas- urements of limb circumferences are taken before and after each session to enable the participants to receive immediate feedback on their performance and on their progress between sessions. It is recommended to bandage the limb or to wear a compression garment immediately after an ALT session in order to preserve the volume reducing results of the treatment.

The ALT method was studied in a randomized controlled trial published in 2009, in which 48 women with lymphedema of the arm were divided into study and control groups. The study group participated in a weekly session of ALT and both groups were supposed to keep on performing self management therapy (included self massage, use of compression garment or bandaging and remedial exercises). The women were treated for 3 months and arm volume measurements, quality of life and self-management care were evaluated. Quality of life improved over the 3-month intervention in both psychological and social dimensions in the ALT group while the control group saw a decrease in quality of life over time.

There was a mean volume reduction of 54 ml after the first ALT session and a mean reduction of 98 ml after the last session. These differences were statistically and clinically significant. However, these reductions were not maintained over the study period. This could be due to low adherence (28%) with compression sleeve wearing. ALT was found to be safe as no woman experienced infection during the intervention period. On a similar note, ALT was found to improve strength, shoulder range of motion, pain and disability in a second randomized control pilot study (unpublished data; 2007).

Mrs. S had lymphedema of the left leg due to removal of inguinal lymph nodes and radiation after gynecological cancer surgery. She suffered from 23% volume increase in her lymphedematous leg as compared to her healthy right leg. After an intensive therapy of Complex Lymphatic Therapy (CLT) her lymphedema reduced to 3% volume difference and was maintained for 6 months. Following an allergy attack and a second tumor removal from her genitals, her lymphedema worsened and reached 17% compared with her healthy leg. Swimming 3 times a week and wearing the compression garment did not stop the exacerbation. She could not afford to take time off from her work once more for intensive CLT. Fortunately, 2.5 years later, an ALT program was launched close to her home. She attended the group sessions once weekly for 18 months. Furthermore, she wore a compression garment during the daytime between sessions and continued swimming twice weekly. In 4 months she reduced her swelling from 17% to 2% (-88%change) and maintained that for the rest of the year.

In summary, an aquatic environment is safe as long as it is being used in accordance with the principles discussed above. ALT is a method that can improve lymphedema and maintain the results of the intensive therapy. When summer comes dive in and take the pressure off your limbs!

Dorit Tidhar was trained in lymphedema therapy by Prof. Judith Casley-Smith in 1999 and was certified by her as a teacher in Self Management and Exercise for Lymphedema in 2003. Dorit designed a program of Aqua Lymphatic Therapy to help people who suffer from lymphedema maintain and improve results of conventional treatment. She is an active member of the steering committee of the Israel Lymphatic Interest Group of Physiotherapists. She has published five articles in scientific journals. She is now working at the McGill University Health Centre’s Lymphedema Clinic in Montreal as a clinician and instructor. She is coordinator of the educational program for lymphedema therapists and nurses in various subjects related to lymphedema.

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Thank you for this article Aqua Lymphatic Therapy ALT and Dorit  Tidhar  http://www.aqua-lymphatic-therapy.com/ If you wish to know more please click on this link…

Breathing before starting the exercises

Self massage in the water

Video to show an Aquatic exercise for Lymphedema of the legs.

Video to show Aquatic exercise for the arm.

It’s not just about the leg.. I’ve hit a wall!!

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ME!!

Well for starters I thought it was time you saw my face and not just my legs!!!

It is four months since my surgery, on 14th March 2013, to have Lymph Nodes transferred from neck to knee to treat the Lymphoedema in my left leg. Due to the nature of blogs you will need to go back to the archives for March to read the initial posts re surgery.

I started this blog because I wanted to document mine and others journey’s through this very new surgery, Lymph Node Transfer. When I looked on the Internet I could find no information from patients or on post surgery progress. The videos I saw seemed to say patients had the surgery and then everything was ok!!! Often without a timeline to give an accurate perspective. At first I was going to keep a diary, as the first surgery to a leg in Australia, however I thought… What good is a diary hidden in a drawer? ….. so my blog was born with the help of my daughter.

While you are here please explore the other posts, as there is a great deal of information about and for Lymphoedema. Non of this replaces however an assessment and diagnosis by a doctor, preferably one who understands Lymphoedema!! Also a Lymphatic therapist can set you on the right track for the use of Manual Lymph Drainage, bandaging and compression garments. It is important that compression garments are correctly fitted, so as not to cause more problems. There are some great videos which help you to do self massage and exercises at home.

However as we all know this is a 24/7 battle to keep limbs as best we can… Surgery offers a ray of hope, though at this stage it is very new, but it certainly brings a light to the future. I give no opinion on the surgery other than to document progress in an open and honest way and allow others to make their own opinions. I will say the results are slow and it can take up to two years for the transferred nodes to grow. Everyone has a different story, different results and different progress, every doctor has a different protocol. Results for nodes transferred to arms is different to legs given the larger area and the pull of gravity. My experience is with my leg so I would love to hear someone’s personal experience with a transfer to the arm.

So far we are following the progress of Sue, Jennifer, Lori, Jessica, Christine and myself. There is also an inspirational story of Amy through her Facebook page at http://www.facebook.com/pages/Ninjas-Fighting-Lymphedema/110454419138265?ref=ts&fref=ts Ninjas Fighting Lymphedema… A must “like.” Via the Internet we are able to support and encourage each other so as not to feel so alone. When surgery is new there are few people to ask or talk to so this little “leg club” is great, it is something I never realised would be such a help when I started my blog. What we share is an emotional roller coaster of hope and expectation!

Before I finish, as I said in the title, I’ve hit a wall, not going forward or back but have reached a plateau! The doctor had said it was ok for me to start to swim again, but for a while I have been a little anxious about another infection, as this is why I stopped going to a pool in the past. However I found one that appears very, very clean and change rooms checked regularly, there is a pool nearer but it is not so well looked after, so I have been going to South Sydney Juniors. The best thing is that it is quiet and usually I can get a lane to myself, in the middle of the day, so no pressure to go fast. I spend thirty minutes, at least, walking in the water and treading water. This ensures that the legs are down and therefore the waters natural compression comes into play, more at the ankles and then less going up the body. This pool is also good as even in the shallow end the water is up to my arm pits thus stimulating the nodes in the whole body. I do enjoy the time spent with no compression or wraps on and I feel it helps my whole body to get stronger. After I drink plenty of water to help flush out the toxins from the body. Being in the water the limbs stay cool especially when it is to hot outside for walking…I know many of you feel a bit embarrassed to go to a pool but there are all shapes and sizes and once in the water no one sees you and everyone is focused on their own thing! Well I will see if this helps to get me over the wall and on to the other side!!

Anyone who has a story of Lymphedema I would love to hear from you either in the comments or by email helenbrd@bigpond.net.au if you are happy to share your story as a post just let me know. I hope to bring you further updates from everyone soon..

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Photo South Sydney Juniors

Lori’s story of Primary Lymphedema and treatment

imageToday Lori sent me her timeline of Living with Primary Lymphedema and the effect that it had on her life..it actually made me cry when I read how her life fell apart as the Lymphedema got worse over time. This is a very honest and open account and should be read and shared by everyone.. This is the face of Primary Lymphedema….

Lori’s Lymphedema Timeline….

“Approximately five years ago in 2007, I noticed extreme swelling in my left leg. I first sought treatment from my primary care doctor, and then was referred to a vascular physician. I underwent a CT Scan to rule out a venous clot. The vascular surgeon did not find a venous clot and sent me to another vascular specialist to try to determine the cause of my leg swelling. He performed an ultrasound and ruled out a vascular cause of the swelling, and referred me to a lymphedema specialist for what he suspected was lymphedema. I was diagnosed with lymphedema by Dr. Rockson at the Stanford Center for Lymphedema and Venous Disorders.

At the Center of Lymphedema, I was instructed in conservative treatment for lymphedema, which is very time intensive, and which I have been doing. The treatment involved the standard decongestive massage therapy with compression bandage wrapping, manual lymphatic drainage, pneumatic machine massage, and then compression garments during the day. I diligently did this for 2 years, and during that time, my leg swelling worsened to the point where I could not zip up my boots because it was so much larger despite my efforts.
I felt frustrated, and took part in their clinical trial with Keoprofen for six months. However, the medicine also didn’t help my lymphedema. During the six month trial, my leg swelling continued to overall increase! This was very discouraging.

Over the last three years, I have been wearing compression garments daily, using a gradient pneumatic sequential pump daily and wearing a night-time compression garment. In the last three years with all of these interventions, my leg swelling worsens. I can’t find a pair of shoes to fit my left foot. I had to buy two pairs of shoes, one pair a size larger to fit my left foot. A lot of my slacks didn’t fit because my left leg was too big for the left pants. My activities or rather lack of activities are dictated by my lymphedema. Forget skiing or ice skating as I couldn’t fit my foot into the boot in the winter. Exercising was always challenging with the compression garment bunching behind my knee and causing skin irritation and abrasions. Now, the throbbing and swelling and pressure precludes exercise.

My leg has really suffered in the spring and summer. It is very painful and uncomfortable with the warmer temperature when my leg swells even more. The swelling is unbearable and I minimize going outside. I try to spend my entire time inside in the air conditioning. The lymphedema has taken over my life. My whole day would be focused on what time I will wrap my leg and pump my leg as it very time-consuming, and I have had to decline normal social activities and interactions that most people take for granted.

A major concern of mine is developing a life-threatening infection. I check my skin, especially where the garments rub my skin, like around the knee and ankle. A few months ago my leg split open on its own. I noticed a trickle of blood running down my leg. This was a small cut, but it was scary for me. I worry about developing cuts, insect bites, and a horrible infection. I take a risk every time I shave my leg.

As I get older, my leg will continue to get bigger and bigger. Sometimes I wake up crying, wondering how I will deal with this the rest of my life? This disease is unforgiving and making me depressed. I can’t enjoy family functions because I can’t stand or even sit for any length of time without it starting to throb. This disease has taken over my life. And my left leg continues to get bigger, and swell, and get bigger, and swell.

In the last six months, I have been seeking treatment at Washington Hospital in Fremont, Ca. The lymphedema clinic took more measurements of my leg, and informed my that I had approximately 900 ml of fluid in my left leg. I also had a lymphoscintigraphy which revealed no lymphatic activity in my left leg! The radioactive nuclide never made it up my leg after several hours. I also had an MRI of the lymphatics which confirmed the massive edema and no lymphatic flow of my lower leg.

In September, 2012, Dr. Rockson evaluated my lymphedema and determined that my medical condition had substantially deteriorated. My profession is an elementary school teacher (2nd grade). He recommended that I undertake an indefinite leave-of- absence to restore my health because standing on my feet teaching became unbearable.

As it stands now, I can’t work and am on disability. I need to go back to work to help support my family. I’m the mother of four children and two are in college.

In early April I met Dr Vasile is a reconstructive surgeon in New York, who specializes in microsurgical lymph node flap transfer for lymphedema treatment. I chose Dr. Vasile because she works very closely with Dr. Becker, who pioneered the lymphnode transfer surgery. I had exhausted conservative therapy, and this was my chance to cure and/or halt the progression of lymphedema. There are very limited basins of lymph nodes that can be used for this surgery, and thus a very limited number of chances to get this right.

On May 29, 2013 I had my surgery. I remember waking up very happy and relieved it was over. I stayed in NYC for five days to recover and see Dr. Vasile on post-surgery day two. After surgery Dr. Vasile and Dr. Becker told me not to put any pressure on the incision site which is adjacent to my left knee, on the right side, about two up from my knee. I also have an incision under my arm (four inches) where lymphnodes were taken out. I was bandaged just up to the knee with no compression. My instructions were to STOP using the Flexitouch pump and to have manual lymph drainage with my Lymphedema therapist and keep all pressure off the incision site for one month. Dr. Becker wanted me to start swimming as soon as my incision closed and the JP drains were out. My knee began to swell like crazy and I called my doctor and asked if I could use my Tribute garment and just wrap with compression up to the knee. She agreed, and I began using the tribute nightly. I started swimming about two weeks after my surgery and felt better after being in the pool.
Last week I had my first manual lymph drainage session with my lymphedema therapist. She compared measurements to our last session which was five months ago. My calf had gone down in size, but other parts of my leg had increased. She reported her findings to Dr. Vasile who said this was perfectly normal. My therapist has told me to try treading water for 15 minute periods instead of swimming. I have been working on this for the past week, and feel better when I am in the pool and treating my leg to the natural compression of the pool. I wear my compression thigh highs from Jobst during the day.
Overall I can say the lymphnode transfer was a blessing from God. I felt that God led me to Dr. Vasile, and He guided her hands during the surgery, along with the hands of Dr. Becker, Dr. Chen and Dr. Levine. Being under general anesthesia was very scary for me, but the Lord was in control of it ALL. I give God all the glory and praise in my situation! I will be healed as much as the Lord is willing and I will be satisfied with what he has in store.” Lori

Thank you Lori for sharing your story with us… It can only help to give a voice to Primary Lymphedema and the impact it has on everyday life.

I need to add a footnote to this with regard Primary Lymphedema and surgery.. It is very important that the whole lymphatic system is checked to ensure suitability and that the removal of nodes for the transfer does not cause more problems. Lori had MRI in NYC at Weill Cornell which mapped the nodes in her body. Other than her left leg the nodes were normal so surgery could go ahead. Every person is different and in writing this blog I do not replace a medical assessment and a plan for treatment. A connection with a Lymphedema specialist or therapist is essential. Lymphedema is a serious condition which can become worse if not treated properly. Surgery is very very new and all of us that take it on are really “guinea pigs” testing the water for the future. There are no guarantees at this stage but we hope that one day it will be more main stream treatment..
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