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Topic: When will docs ever REALLY listen and examine!

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Oct 17, 2019 09:17AM

CTLMom wrote:

I'm wondering how many are currently or have had trouble getting thoracic back pain diagnosed. I have been suffering with mid back muscle and nerve pain that wraps around my left side for over 3 years now. I have posted my story on several threads on this site. I've been diagnosed with radiation fibrosis and adhesions from lat flap reconstruction surgery which contribute to my ongoing pain. I have had a recent bone scan to rule out any cancer concerns which came back clean. I have been to two pain doctors and am also being seen by a cancer rehab specialist. Physical therapy keeps me from not being able to move as freely as I do. I am a researcher and have found that intercostal neuralgia causes many of the symptoms that I have but no one has suggested it except my physical therapist. I find doctors are very quick to suggest nerve meds of various sorts (a couple of which I tried with awful side effects) without really doing a through physical exam. Before I agree to take something else that alters my brain chemistry I would like to know what is causing my pain. Has anyone had or heard of using a Magnetic Resonance Neurography to examine peripheral nerves? I would like to suggest this to my pain doctor but one doctor already has said she never heard of it. I'm honestly looking for any suggestions. This so tiring and I'm sick of being in pain every day of my life with no one offering any real insight. Today is especially painful which has let to my increased frustration and venting here. I know I'm not the only one that is dealing with this! Thanks for listening!

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Oct 17, 2019 09:58AM GlobalGal wrote:

A battalion of physicians, including primary care, neurologists, cardiologists, hematologists, and ER doctors, all failed to diagnose my spouse's severe back pain, originally lumbar with excruciating sciatica, then horrendous thoracic pain. They ran every test under the sun.

While hospitalized, an internal medicine PA was on the phone with radiology trying to figure out what additional scans to order when an infectious disease doctor, completely unrelated to this case, happened to walk by, heard the PA on the phone, and commented, "If there are splenic infarcts (my spouse's spleen was enlarged with some microscopic dead spots), then assume infectious disease until proven otherwise."

That off-hand comment, dear reader, saved my spouse's life!

No one had even considered infectious disease because my spouse was not running a temperature and his white blood cells were not elevated. But he did have a replacement biologic heart valve, which are prone to endocarditis (heart infection).

They finally ran blood cultures and did a trans-esophageal ultrasound which showed bacterial vegetation growing on his replacement aortic heart valve, which then showered tiny septic emboli (blood clots with bacteria) to his spleen and left kidney, along with the development of discitis (bacterial inflammation) of both the thoracic and lumbar spine.

He's now on 12 weeks of IV antibiotics.

Apparently, some 10 percent of endocarditis patients do not run a fever.

Untreated endocarditis is always fatal.

Bottom Line: Sometimes severe back pain is due to something else going on in the body.

De novo stage IV metastatic breast cancer with metastases to 3 central lymph nodes in neck following complete thyroidectomy for papillary thyroid cancer WITH NO PRIMARY BREAST CANCER IDENTIFIED and NO OTHER METS (so far) Dx 3/20/2019, Stage IV, metastasized to other, ER+/PR+ Hormonal Therapy 6/4/2019
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Oct 17, 2019 11:59AM flashlight wrote:

Hi CTLMom, I don't think I have radiation fibrosis as yet, but I have left sided chest pain that radiates around my side up to my left shoulder blade with a sharp, shooting pain daily. I will check with my doctor about the intercostal neuralgia. Years ago I suffered with Costochondritis and received chest cortisone injections that helped. My doctor said the way the nerves run you could be hurting in the back from an injury/swelling in your chest. I am sorry I don't have any information for you and hope you get some answers soon.

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/27/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 17, 2019 08:37PM Daylightdancer666 wrote:

I had back pain got few years given naproxin one time diazosm til I eventually got diagnosed with secondary breast csncer and it's all in bones plus crushed vertebrae..

I'm on better pain relief now slow release morphine 20ng twice daily and 200mg twice daily pre gablin I have paracetamol four times daily but recently been having oral morphine truce day break through pain x

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Apr 27, 2020 08:24AM Marie123123 wrote:

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“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

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