(Breast) Surgery Side Effects
Lymphedema, Thoracic outlet syndrome, axillary web syndrome
A few months after my breast surgery and a month after my radiation, I was given an order to see a physical therapist to prevent lymphadema. I didn’t really question it, I just said ok and scheduled my first appointment. I went to physical therapy at Rehabilitation Institute of Chicago (RIC). I walked in to my first appointment and they started going through my lymphatic system. I didn’t even know it existed. What is the system and what does it do? I sat there looking at a chart of the human body. I think they talked about this before my surgery, but to be honest I really don’t remember. Everything was still all blurring together.
Physical therapy shoulder strengthening
LYMPHADEMA: The condition is caused by a blockage in the lymphatic system, part of the immune and circulatory systems. Lymphedema is most commonly caused by lymph node removal or damage due to cancer treatment.
The main symptom is swelling in an arm or leg that may be accompanied by pain or discomfort. *Mayo Clinic
Each visit to PT, I learned more exercises and stretches to ensure that fluids were flowing from my hands, passing through my right arm pit where there were no longer any nodes and heading towards my left side across my chest. I would return home with workout bands to stretch and I’d massage my arm, chest and neck. In addition to the exercises and stretches I had to go in and get a compression sleeve. Ok, now what is this? I seriously didn’t know what I was in for. Again, maybe they told me, but I just don’t remember (or maybe I didn’t want to remember all that my body was going to go through). I purchased my sleeve from a physical therapy clinic here in Chicago. It was neutral and did it’s job. A few weeks later I came across an arm sleeve and gauntlet company started by two breast cancer survivors that developed lymphedema. Lymphedivas creates elegant and comfortable compression sleeves. Check out their sleeves and request your free lymphedema guide here.
Every time I would go on a plane or workout I would need to wear the arm sleeve to ensure that there was no inflammation and that my arm didn’t swell up. Also I would need to ensure that all blood pressure and blood drawn was taken from my left arm so that there weren’t any issues with blockage in my arm. Time went on when I felt that the need for my sleeve wasn’t necessary, but something still was happening in my arm. Each time I would lift my arm up I would feel sharp tinkles up and down from my fingertips into my underarm. The rotation in my shoulder was very small. I was so excited to get back to yoga, but there were so many things I couldn’t do as well as I was so uncomfortable. What was going on here? I shared this with my doctors, but no one really said anything. Could it have been sore and tight from the surgery and then the radiation? Maybe I wasn’t explaining it correctly and they weren’t understanding what it was that I was experiencing. Every time I would go to yoga or try to do things I used to I would get very frustrated. I knew my chest was tight from these new things called implants in my chest and from the burning of my skin, but I didn’t think I would never be able to do arm circles again.
Fast forward 3 years and I was taking a Pilates reformer class with my favorite Pilates instructor. There were two weeks that for some reason no one else showed up for class and allowed for me to have a private lesson. It was one of the best things to have happened. I shared with Logan my breast cancer experience and how I was feeling in the chest, shoulder and arm. She worked with me on how to move around during the workout, but I was still super tight. One class she said to me you need to see my chiropractor. I have back issues and had been talking to my husband about seeing one anyway so I thought well now is the perfect time to go and get my body checked out.
What a relief! My chiropractor not only has been able to adjust my back and neck, but also was able to give me a name for what I was experiencing in my shoulder and armpit - Thoracic outlet syndrome (TOS). A group of disorders that occur when certain blood vessels or nerves are compressed. TOS affects the space between the collarbone and first rib (thoracic outlet). Common causes include trauma, repetitive injuries, pregnancy, and anatomical defects, such as having an extra rib.
The pain that came from him reaching in and massaging out whatever was going on in my armpit was horrible, but after a few months the rotation I had was almost back to normal and the tinkles were only slightly there. I couldn’t believe that I had experienced the pain, tightness and tinkles for as long as I did. Why didn’t anyone tell me that there was a chance of experiencing this after my breast surgery?
Well it was a few months ago and I had a Valentines Day #Giv-away. The lovely lady who won the caring crate is a previvor! I started following her more closely on Instagram and she wrote a post about Axillary Web Syndrome. I immediately was interested in what this was. WAIT! WHAT? I think this is what I had. Could it have been AWS? Could it have been TOS? I don’t really know but either way...this lesser known side effect needs to be addressed. I reached out to Jessica to share her experience.
“One of the lesser known side effects of breast surgery is axillary web syndrome. This condition involves the development of scarring or connected tissue under the arm. AWS, or cording, can be painful and limit the range of motion in the affected arm. AWS can take anywhere between a few days and several weeks to develop after surgery. Some people, like me, have even developed AWS months after surgery. At first I thought it was just a pulled muscle from kickboxing class, but it just kept getting worse. Doctors are not completely sure why some people develop it. One theory is that breast surgery may traumatize the blood vessels and connective tissue under the arm. This causes inflammation, which eventually hardens nearby soft tissue. In my case, this also caused a capsular contracture. Never heard of that either? I know. It's not that common, luckily. I had an additional surgery to remove the hardened capsule of scar tissue and my implant (this is called a capsulectomy), along with several of the larger cords, and then my implant was replaced. I was a Grade III contracture, which meant that my implant had visibly lifted and felt harder to the touch. AWS and capsular contractures can, and usually are painful. The skin feels stretched and tight, and usually limits movement in the affected arm. If the condition is mild and does not cause pain or affect range of motion, a person may not require surgery. In mine it did. But I had the combo of cording and contracture. In most cases, a doctor will recommend physical therapy to release the scar tissue. Things to look out for are changes in the shape, softness, or position of your implant; this could be a possible contracture. Discomfort when raising your arm(s), tightness in the skin (especially around the armpit), and visible rope-like scarring are all symptoms of axillary web syndrome. The good thing is that these can be treated! My intention is not to scare my Breasties, I just want to make you aware of things to be mindful of- we all know we are our own best advocates! Love you all 💜”
Thanks Jessica for sharing the knowledge you were given and what you have gone through. If you have any concerns about tightness or mobility after your surgery please ask your doctors about AWS or TOS! Don’t wait like I did to get help!