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Old 02-20-2017, 06:09 PM   #1
thinkpositive
Senior Member
 
Join Date: May 2014
Location: San Diego
Posts: 411
Any of you have Axillary Web Syndrome?

I was recently diagnosed with axillary web syndrome. Wondering if anybody else has this and what type of treatment they received.

My left arm has had limited range of since I had my mastectomy a few years ago. It wasn't THAT limited and frankly, I thought that this was a normal side effect from having the surgery. After doing hot yoga for over a year, it seemed my range of motion returned to normal. However, I haven't practiced yoga in the past 6 months.

My left arm has been hurting me lately and my range of motion is more limited than it has ever been. It is also a bit swollen. The weirdest thing is that I have these tight cords in my elbow crease and what looks and feels like a guitar string under my armpit which runs down my arm.

I went to my doctor and oncologist and they had no idea what it was. They did several tests to rule out blood clots or something more sinister. They still didn't know what it was. I then asked google "what is it called when you feel like you have guitar strings in your armpits?" This is where I found Axillary Web Syndrome.

Axillary Web Syndrome is a side effect that some of us get when we have lymph nodes removed. It basically is like having a rubber band going from your arm pit to your elbow or wrist. It keeps getting tighter and limits your range of motion.

My doctor agreed that I do have this syndrome and is planning on sending me to physical therapy. She also encouraged me to get back into yoga. Have any of you had this syndrome? What worked for you?

Any ideas or suggestions would be welcomed!

Thanks,
Brenda
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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