Let’s talk about truncal Lymphedema, or what I like to call “That Junk in My Trunk.” Hey, we have to laugh, right? 🙂
My Lovely Little Lumps -Fergie
As of January 16, 2017, it has been a year since my truncal lymphedema diagnosis was confirmed. The new lympheversary where I received yet another gift from the one that seemingly keeps on giving as I tacked on yet another year where it appeared in a new place – 1994, 2007, and 2016. Lymphedema appeared in my trunk after having it 22 years in my legs. No rhyme or reason. No explanation whatsoever. Just a “Hey, I’m here! I’m moving in like it or not. Go figure it out!” My “LE” is like a bad roommate that just doesn’t want to move out and just keeps taking over more rooms in the house! Sigh.
What is Truncal Lymphedema?
The good people at Lymphnotes -DESCRIBING TRUNCAL LYMPHEDEMA do a great job of explaining it. The National Lymphedema Network also has a great paper on it. See below:
Presentation of symptoms in patients with truncal lymphedema can vary from obvious swelling, with or without discomfort, to no signs of swelling, but significant pain. The sensations can include shoulder discomfort or pain that is localized, or radiates across their trunk. Other sensations can be described as “feelings of fullness,” “heaviness,” or “tingling” under the arm. It is important to keep in mind that arm “tingling” can sometimes be confused with the numbness and tingling that is due to the surgical procedure and position in which the patient lies on the operating room table. Lower back pain can be reported if there is enough posterior LE that requires the individual to alter body stance for comfort. If the patient has peripheral hand neuropathies from Taxane chemotherapies, it is possible that their finger numbness might be worse with posterior LE. Signs of truncal lymphedema include swelling in the breast, fullness over the clavicle or fullness over the anterior chest, with bulging along the mastectomy or lumpectomy scar lines. Posterior view examination may reveal extra “rolls” of skin along the lateral trunk, or fullness anywhere along the scapular or upper back area… -Esther Muscari-Lin, RN, MSN, APRN, BC, AOCN. Source: Truncal Lymphedema By Esther Muscari-Lin, RN, MSN, APRN, BC, AOCN.
Before you panic too and wonder if this will happen, I will remind you that I have primary Lymphedema. This is an excerpt from the National Lymphedema Network.
People can be born with abnormalities in the lymphatic system. This type of lymphedema is known as primary lymphedema, which can impact any part of the body and may involve swelling in multiple limbs or body regions. – National Lymphedema Network
The first question – How Did I Know?
For a couple of weeks after the new year in 2016, I felt this heaviness in my back, a pins and needles type feeling. Some pain. More pain than usual. I also noticed that despite my best efforts, I wasn’t getting that much thinner relative to my activity and eating habits. The year started with a 5K. Yet, something was wrong. It was eerily similar to what I felt previously in my legs and ankles when I was Stage 1 there.
You know that sick feeling you get when basic intuition kicks in that you are about to receive some bad news, yet you try to push it to the back of your mind? I didn’t tell anyone, but I made an appointment for an evaluation. Maybe I didn’t tell anyone because saying it out loud would make it more true. In my mind, I labeled it as a “checkup”, but in my heart I kind of already knew. It was a weird sort of déjà vu.
The second question – How was it confirmed?
It was a Saturday. I was kind of in a rush to get it over with, so I made the earliest appointment possible, which was on the weekend. A certified lymphedema therapist (CLT) whom I had never met before did my evaluation. She told me she had 18 years of experience. I was asked to take off my shirt and not say where I felt my symptoms. Within a few moments, the CLT put her hand on the exact spot, and said “You have it here.”
My eyes were closed in prayer, but just then a lone tear escaped down my cheek. I wiped it away very quickly, since I wasn’t with my normal CLT. My mind started racing. As she continued to talk, her voice sounded farther and farther away and I was trying to rationalize how this could happen to me. I was doing everything humanly possible to manage my lymphedema. I felt like I was being punished for something I didn’t do.
Then I heard her say, “And we can’t wrap you…” All of my senses snapped back to the present moment.
What do you mean you can’t wrap me?
She said, “Well, you have to breathe.” Ah! Breathe. Breath. Oxygen. A basic necessity to human life. Okay, I get it. She continued, “Not much else can be done other than wear compression, exercise like you do..” As she kept talking, I realized I was being handed another life sentence with maybe even less of an arsenal to fight back with. Panic started to rise. I interrupted her speech again and said “If I can’t wrap, then I’ll do CDT again this year, KT tape, go to the pool more, reduce my stress, WHATEVER IT TAKES!” In that moment I didn’t know how I would survive with Lymphedema in 3 places.
I was scared. I was mad. I was in shock. A whole range of emotions flooded through me. Thank God a group of great friends helped me process it.
The following week I was scheduled with my usual CLT. My personal hero, friend, and confidante. The woman who helped me accomplish Stage 1 reversal with my legs.
I showed up very emotional, had a cry, and she said she was very sorry that this was my new diagnosis on top of everything I was previously dealing with in my legs. Then we got down to business. I asked “Is it really true that I can’t wrap?” In my mind, I had not accepted it yet. She said “Yes, it’s true. But that’s okay. We are going to be okay. We are going to work together to figure this out.” Cue the Rocky music soundtrack.Attitude is everything in managing chronic illness. You often have no control over how your body will turn against you, and simultaneously no idea how hard it is working for you to fight back or compensate. Keep reminding yourself that your body ultimately wants to heal itself. It’s the power of self preservation. Knowing that my legs and trunk are working hard to heal me, I feel empowered to control my attitude and reaction. Like my Dad said in January 2016…
You beat it in your legs. You can do it again. -Daddy
1 – MLD
The first thing that changed was the manual lymphatic drainage process. Specifically, the sequencing of the flow movement was changed, and the timing was extended to be able to turn over and perform on my back. Instead of 60 minute sessions, they were extended to 90 minutes. Sometimes we decided to wrap my legs, sometimes we decided to tape my back, and sometimes we decided to do tape on both. We made judgement calls on what was more swollen and which area needed focus. My services are done in a hospital. I am not a medical professional, so I will not attempt to explain the detailed process. What I do know is that both CLTs that worked with me in 2016 focused very hard on deep breathing and pushing hard on the lymphatics around my gut.
Here is a great video by a friend of mine that has truncal lymphedema and does his own routine at home – Truncal MLD
This was also the first time I experienced nausea and flu-like symptoms post MLD. When my trunk started to become decongested, my nose began to run and my ears popped for a few hours. Hours later this stopped just as suddenly as it had began. That week I felt like I had been hit by a truck. I had pains and aches all over my body, and I was completely stunned at how differently my body was reacting to truncal CDT versus lower extremity. In the same person no less!
Managing truncal has been a completely different experience from managing bilateral lower extremities, and there is a delicate balance in managing all 3 areas. Do not make assumptions that just because you have lymphedema in one place or treat lymphedema patients, that all people with it have the same symptoms. Even if it’s the same person. That was a huge mistake on my part, but I did not know until I experienced it first hand.
2 – Truncal Compression
This is probably the most frustrating aspect of having both truncal and bilateral leg lymphedema. Almost full body compression. There are all of these “RULES” you have to follow with truncal LE too. After going home and mulling over the rules, this is what I thought.
The Rules & My Inner Lymphie Goddess Responses
- No underwire bras
- What? Why? I don’t know about you, but me and my bra go way back. That’s my girl! Every woman has their certain type of bra that they like. Now you want to yank that way from me, LE? Boooo you!!!
- No racerback bras
- As an avid gym goer and of course novice 5K runner, say WHAT?!!! Try scanning the globe for a sports bra that does NOT have a racerback on the back. I dare you to try it. To find one that is “U” shaped. It seemingly defies all logic and reasoning. When you jump, the girls need support. Another boo for LE!
- You want snug but not “too snug”
- Um, what’s that supposed to mean? Snug but not too snug. A girdle? A waist trainer?
- You might have to sleep in a nighttime garment
- Oh. H___. No. On top of the Tribute for my legs, I now need upper extremity heat. Where am I supposed to sleep? An igloo?
- You have primary Lymphedema, so we really don’t know which products to recommend. You’ll have to make do.
- What is this? A game of I Spy? Ok, now I’m really mad, LE. But that’s ok! We shall see about that.
Pain – Truncal Lymphedema is PAINFUL
Types of pain I experience from having truncal lymphedema.
- A sensation of my rib cage being squeezed or sharp, piercing pain
- Heaviness in my back, like I am carrying a tool belt or fanny pack
- Pins and needles along the left side of my back at random times
For relief I will stick a large Solaris SP-20 Tic-Tac swell spot on my back underneath my compression camisole. It really does help!
The Hunt for Truncal Compression
The First Day
I will never forget the first day I went on the hunt for “Shapewear”, and it was not pretty. It took me three hours. I went to Macy’s and pulled all kinds of stuff from the racks. The salesladies ignored me completely. I needed something temporary to wear during CDT until I could reduce. Similar to trying to find shoes to wear with bandaged legs. Picture trying on about 20 different kind of girdles. I ended up leaving with 2 things.
Looking back, I wish I would have taken a picture of myself. After trying on so many “garments”, I was sweating and my hair looked like a bird’s nest. There was a huge pile of different garments on the floor. For comfort and “snug but not too snug”, I chose the Maidenform Flexee, only to find out the next week that I could have gotten on Amazon for 1/2 of the price.
Lymphedema Support Team
My Lymphedema Support Team consists of my online support group called the Lymphie Strong Inspiration Group and The Lymphedema Running & Fitness Club. I have known some of the members for years now. If I have a question, they are my go to resource. Whether you find one online or in-person, it’s important to find friends that understand first-hand what you are experiencing and are researching themselves on how to make improvements in living with this disease.
Rebuilding My Lymphedema Toolbox
Let me once again begin by saying this is MY personal toolbox. There are no guarantees whatsoever expressed or implied as to whether or not it will work for you. I have primary lymphedema and have had it a very long time. No medical advice is being rendered, so follow-up with your own doctor or therapist before making any changes. I’m not a doctor, no do I play one on TV. I’m joking, but seriously this is the internet. Use common sense on things you try to help manage your lymphedema.
- Proper sleep – No change. I still aim for 7 hours a night.
- Proper hydration – No change. I still have the same water drinking goal.
- Exercise in compression & Exercise in water
- Adherence to the Do’s & Don’ts of Lower Extremity Lymphedema – I think this goes without saying.
- Awesome LE therapist – No change except 2 rounds CDT: Jan – April & Aug – Dec 2016
Stepped this up by adding tools to try to reach my back.
Massage Stick Roller
The one I have is a Gaiam Pressure Point Massager (Blue), and I use it to roll my back similar to these pictures below. It provides much needed relief when I’m having a bad day. 😦
As I have stated before, I dry brush every single morning in the same manner I perform self mld. Begin by sweeping the collarbone area and then finishing with the rest of the body. Ecotools bristle bath brush – You can find this at any drugstore or big box retailer. It’s probably the cheapest thing you can buy for lymphedema management. I kid you not.
Compression Garments 23/7
Ah, a Lymphie list is incomplete without a list of garments.
- Vest and full pants nighttime garment
- YES, this is very hot to wear.
- Yes, it’s very EXPENSIVE.
- Yes, I fought my previous insurance for it with various appeals.
- YES, there are other alternatives. You choose the one that works for your budget and insurance.
- It keeps me reduced, so I made the sacrifice. Don’t judge me, and I won’t judge you.
Juzo Custom Thoracic Vest
Next is the custom Juzo Thoracic Compression Vest for daytime compression wear. My doctor wrote a prescription for this. I was measured and surprisingly it was approved without issue. It did take 3 tries to get the fitting correct but well worth it. The garment has a zipper and internal fish eye hooks. Yes, once again it is hot and the fabric is thick. The main thing is IT HOLDS me. I use it mainly for work.
JoviPak Bellisse Bra
Depending on what I wear to work, I might use this Lymphedema Bellisse Comfort Compressure bra. My doctor actually suggested this. I have 2 of them.
On days when it is super hot outside, I might opt for wearing the Wear Ease garment tank, which can be found at Wear Ease Compression Camisole. Again expensive, but they do have Flash sales from time to time. Subscribe to their email list to get notifications.
For the gym, I am currently using the Bioflect® FIR Therapy Lymphedema Support Micromassage Compression Vest Tank Top , but it has been unavailable on Amazon for awhile now. The material is similar to the Solidea type garments if you have ever tried those. Another good one is SlimMe By MeMoi womens High impact sports Shaping Tank. I’m always looking for good suggestions on gym wear, so please drop a comment below if you have any great suggestions.
If you haven’t tried to tap the power of Kinesiology Taping for Lymphedema, I highly suggest you do. Be sure to ask your certified lymphedema therapist if they are certified in taping. This is a huge tool for me, because I cannot reach my back. Below you will find an example of my legs and back. Google search “Kinesio tape for Lymphedema” and you will find all types of examples in the images. There is also a book called Kinesio Taping for Lymphoedema and Chronic Swelling – Kinesio Taping Manual. I also have a self-made video on this blog.
Rebounding (mini trampoline)
Many people find a huge benefit from rebounding. I have the following mini trampoline that I bought at Wal-Mart – Gold’s Gym Mini Trampoline. Trampolines are like anything else. They go from low end to high end. Choose one that fits your budget.
Vibration therapy is thought to be beneficial because the theory is that it “shakes the sludge” of your lymphatics. I don’t understand all the science behind it, but I do know that I jump on the one at my gym every chance I get. I stay on for about 30 seconds at a time. Some therapists have one in their offices and put patients on after MLD is done. I tend to do it after I exercise. Vibration platforms go from low end to high end in the thousands of dollars range. Hard to say which is best.
When my father was dying of cancer, the pool was my lifesaver. I had very little time for self LE care during the summer of 2016. Here are some sample videos. You don’t have to be an Olympic swimmer! Just jump in, have fun, and do your thing.
I am currently experimenting with diet modifications by using the ketogenic diet. You can find more information in the Lymphedema and the Classic Ketogenic Lifestyle group on Facebook. Here are a couple of books I use as references.
Now here I am, 15 months later. So far I have survived. Will I ever be naturally thin again? Probably not. I know I have to battle swelling in my trunk and legs until a cure is found.
Thank you for sharing the journey and learning curve with me. One day at a time. Don’t foget to #movethatlymph ❤