by Big Mike
(Massachusetts)
by Erika
(KY, USA)
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?
Comments for Tietzes syndrome after radical mastectomy & reconstruction?
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I went to my chiropractor to be treated due to mid back pain between my shoulder blades. The last time he gave me treatment, he lifted me and adjusted my back and my vertebrae popped. I have been experiencing difficulty in swallowing, back and shoulder blade pain along with pain along the right side of my neck into my scapula. Most of the pain however is to the right of the breastbone and feels that it radiates through to my back.
I do have a history of hiatal hernia and acid reflux. I have since changed my diet over the past week and am swallowing a little better but still feel like I have something stuck in my throat at times. I am going to see a gastroenterologist tomorrow. I am beginning to worry if there is a tumor involved. I had an endoscopy less than a year ago and would hope that a tumor would not grow in the esophogus that quickly.
I do experience some arm weakness and tingling of my right arm when I sleep. I have been trying to sleep elevated in the evening and am currently taking 2 capsules of dexilant. The breastbone and back situation sounds similar to Tietzes syndrome but am quite concerned. Thank you for the information that you have provided.
by Katya
(Western, WA)
When my 2 oldest children were small (& I still smoked occasionally) I suddenly one day sitting & laughing on the couch with 1 of them developed ingratiating, crushing upper chest pain; centered at & above my sternum (7-8 yrs ago). I lay on the floor in a fetal position, until the paramedics took me to the hospital. Each episode was sudden & with non-stop crushing horrifying pain. It generally brought me to my knees as the pain was so horrid that I was physically unable to stand or hold myself up, but no position was/is ever comfortable. At that 1st hops visit & several subsequent ones, the dr.s told me I had everything from heartburn (which I emphasized had never been a problem except when I was in late pregnancy, also I hadnt always eaten anything within hours of an attack), they told me I was having a panic/anxiety attack (though my pain was in no way psychosomatic, plus my life was relatively happy & many times these attacks started when playing or relaxing with family), they even suggested gall bladder problems or other stomach upsets though that clearly wasnt where the pain was. Generally they left me in a room for hours while I was too incapacitated to cry out for help, they refused to give me pain meds or any anti-inflammatories, & they tried everything from anxiety meds to anti-nausea or heartburn meds (which of course didnt work). Finally after nearly 2 yrs of these trips to the same ER, an intelligent Dr appeared one day & listened to me & said he though I had costrochondritis! He said the fact that the first episode happened after a serious cold with bronchitis, that I had immunological diseases in my family, that I did house-keeping & heavy landscaping for a living & that I smoked, plus being female (& that they had repeatedly ruled out heart or digestive problems with tests) - made Tietze most likely. I know enough now from what he told me to avoid having an attack but once or twice a year. I dont smoke which really aggravates my chest, I watch for any mild creeping upper chest pain. My biggest problem now is that a severe cold or flu with vomiting is likely to bring on an attack. Steroid inhalers lower my immunity & generally cause me to end up very sick later even if I only used them a few days to ward off an attack. The swelling is helped with ice-packs, but I often feel like I cant breath properly during an attack. I usually still end up in the ER for pain control & a shot of steroids tho.
by FRANCES FABRI
(NAPLES FLORIDA USA)
I had tietzes syndrome in 1998. florida hospital got 5 doctors together and said i had tietzes syndrome. they gave me indocin at 25 mg for 3 times a day for 2 months. i was cured and i had suffered for i year with the tietzes syndrome. indocin is a cure.
by Deborah
(New port richey, Florida)
My pain started with a loud pop in my chest. so loud i thought someone had shot me. that was a year ago. i am still having pain tho not as severe as in the beginning but i still am sleeping in a sitting position in my bed w/about 25 pillows, any other position gives me horrible pain...i have found no relief or answers.
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