Tietzes syndrome after radical mastectomy & reconstruction?
I was diagnosed with breast cancer (BRCA1 Stage II - 2.5cm tumor in axilliary-breast area) at the tender age of 28 while I was 20 weeks pregnant. I underwent chemotherapy while pregnant and delivered a healthy baby girl on Thanksgiving day of that year.
I did another round of chemo followed closely by a bilateral radical mastectomy and immediate implant/expander reconstruction. During the reconstruction my pectoral major muscle was dissected away from my sternum in order to place an implant/expander under the muscle.
That's when it all began. As my expanders were expanded and my pectoral muscle stretched I noticed pulling, heaviness, and pain in my collar-bone and chest wall. My medical care team indicated that discomfort was normal during expansion and dismissed it. I was told that having the expanders changed for implants would relieve the "normal" pain from the expanders & I'd feel 100% better after surgery.
I had the surgery & if anything, the pain increased. The discomfort was so bad that I not only sought a "pain management" doctor, but also chiropractic care.
The "pain management" consisted of steriod injections into my costosternal spaces, oral narcotics, and gentle muscle relaxers. I asked for physical therapy or exercises to perform myself to help the pain, but no one was willing to listen. Because I work full time, I was unwilling to take the narcotics during the day, plus they've never seemed to help me.
The chiropractor was able to give me some relief, but not consistently or for any length of time.
At some point during this I began having nerve symptoms (burning, tingling, pins & needles, numbness, etc) as well as circulatory issues (absent or limited pulse upon certain shoulder movements and cold fingers/hands) most notably on my left (tumor) side. So I sought more medical care & my options were narrowed to 1) living with the pain, 2) having surgery with no implants/expanders/breasts, 3) having surgery to change the implants to smaller ones, or 4) having surgery of another type of reconstruction (autologous). I sought another medical team & the options were primarily the same. I chose autologous reconstruction even though it was more difficult because it would be the most 'natural' looking, feeling, and maintaining reconstruction.
After the successful surgery I was referred to a "Supportive Care" physician within the cancer center. He was very helpful and immediately suggested PT as well as some other testing for Thoracic Outlet Syndrome. It has been 9 months of PT (both with a therapist & at home) as well as a 1st rib resection to alleviate the circulatory problems.
At this point, the nerves in my left arm will probably need at least 3 years before I know whether the damage done to them is permanent or just temporary. However, the pain in my chest wall and sternum is debilitating. Is this Tietzes Syndrome on top of my TOS?
Gosh, Erika, you've had a tough time.
Firstly, Tietze's syndrome is not uncommon after breast reconstruction. Do you have tenderness if you have press on the joints between the ribs and the sternum? Is there visible swelling of any one of these joints?
Tietze's sometimes affects the sternal-clavicular SC joint, in which case a Thoracic Outlet Syndrome TOS may occur. Pain and tingling in the arm, characterised by worsening when you lift the arms, as when in hanging washing. Or, perhaps you had a cervical rib, or both.
Obviously I cannot examine you, so all is speculation. I gather chiropractic help has given some relief, so the obvious is to continue. My experience is that heavy PA adjustments may aggravate the condition, but "anterior thoracics" will relieve. Perhaps discuss this with your chiro.
You've had a rough time. I would recommend moving over to a part time less stressful job, smell the roses, and keep active. I wish I were nearer!
I hope this has contributed.