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Old 02-20-2017, 06:09 PM   #1
thinkpositive
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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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Old 02-20-2017, 09:02 PM   #2
Catherine
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Re: Any of you have Axillary Web Syndrome?

I have a limited amount of what you have. I need to stretch more and I need to get back to yoga too! Good luck with the PT.
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Catherine


Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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Old 02-21-2017, 01:29 PM   #3
supportwife
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Join Date: Oct 2014
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Re: Any of you have Axillary Web Syndrome?

Hi Brenda,

My wife started experiencing something similar since December in her left hand. Doctors did an MRI to see if they could see anything but there wasn't anything in her left arm other than mild lymphedenopathy. Interestingly she had lymph nodes removed from right side. They just said some weight training should help. At least now I have a name for this I will check with our doctor when we see her next.
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Old 04-15-2017, 10:49 PM   #4
LizzElliot
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Re: Any of you have Axillary Web Syndrome?

I have cords. Mostly on my right side. They subside and then make a comeback. I go to oncology PT when they get bad and the therapist will help move the cording. Stretching helps release. Swimming free or backstroke seems to help break some of the ties. Weird stuff.
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Old 04-17-2017, 09:18 AM   #5
snolan
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Join Date: May 2011
Location: El Paso ,Tx
Posts: 436
Re: Any of you have Axillary Web Syndrome?

I had cords I was working out one day doing ring rows and I guess hanging from my arms they popped. Aggressive stretching with our physical therapist should help decrease the effects. I still have to stretch 7 yrs out or my arm feels tight.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 04-17-2017, 06:12 PM   #6
thinkpositive
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Join Date: May 2014
Location: San Diego
Posts: 411
Re: Any of you have Axillary Web Syndrome?

Thank you all for your comments. My cords seem to have all stretched and/or popped. I did hot yoga for a while and that seemed to do the trick!
__________________
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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