Tietzes syndrome after radical mastectomy & reconstruction?

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?

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.

Dr B

Comments for Tietzes syndrome after radical mastectomy & reconstruction?

Average Rating starstarstarstarstar

Click here to add your own comments

Jun 04, 2014
Rating
starstarstarstarstar
Thanks
by: Erika M Vandiver

I appreciate the answer you gave me. I was fired from my job for missing too much time due to flare-ups of this. Since then I've noticed that the symptoms get worse with an increase in barometric pressure as well as over-use. I get severe migraines in addition to the nerve pain and numbness down both arms. I take amitriptyline to control the nerve pain (I'm allergic to Neurontin) and also cyclobenzeprene for muscle spasm issues. I also use hydrocodone to control the overall pain. However, even with those drugs and Imitrex for the migraines there are days when I cannot get out of bed at all.

I am taking the time to smell the roses though when I can. My 4 year old daughter (the one I was pregnant with at my breast cancer diagnosis) and her 6 year old brother are enjoying their mommy time. I homeschool them and even play around with some miniature horses to relax.

Hello Erika,
Good to hear from you again. Tough being fired on top of everything you've been through, but probablyh a blessing in disguise. One wishes all young mums could stay with their children as you are being forced to.

Research in Holland indicates that too much animal protein in the diet is the cause of them having the highest breast CA rate in the world. Move slowly over to more legumes in the diet; vegetable protein.

Making your own hummus for example from chickpeas is one great way. Type "quick hummus" into the Search at Chiropractic Help. I make it in four minutes flat.

Good luck, and thanks again for responding to the other lady's comment on your page.

Dr B

Dr B

Jun 02, 2014
Rating
starstarstarstarstar
Additional Comment
by: Donna B

I should have mentioned I had existing scoliosis.

Jun 02, 2014
Rating
starstarstarstarstar
Breast reconstruction and Tietzes
by: Donna B

Two years ago I had XX mastectomies followed with immediate breast reconstruction using the LD procedure. Prior to surgery I had 18 rounds of chemo.

Until today I've had no explanation for the spasms in my breasts, the tingling of my fingers, the diagnosis of bi-lateral carpal tunnel syndrome, limited mobility and debilitating pain. I have practically every symptom of Tietzes I read on this site.

For one and a half years I was on a quest for a diagnosis or reason. Doctors involved with my treatment act as if it's all in my head. Other doctors have shook their head in amazement and told me they have never seen a patient like me.

I've been told I could have the thorodasical nerves clipped and the problem would be alleviated. Honestly, I cannot mentally handle another procedure right now, especially one that may or may not work.

Where do I go from here?

Hello Donna,
Yours is a heart breaking story; keep in mind that the mastectomies have kept you alive. Or, in other words, despite these awful symptoms, that it was nevertheless the right thing to do.

You've written on someone else's page, and there is limited space and I've been unable to post my lengthy reply.

Could you please go the Tietzes syndrome page at C-H and copy and paste your question into a new blog.

Dr B

Click here to add your own comments

Join in and write your own page! It's easy to do. How? Simply click here to return to Tietzes syndrome.





Did you find this page useful? Then perhaps forward it to a suffering friend. Better still, Tweet or Face Book it.