When will docs ever REALLY listen and examine!

CTLMom
CTLMom Member Posts: 56
edited April 2020 in Pain

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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  • GlobalGal
    GlobalGal Member Posts: 63
    edited October 2019

    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.

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  • flashlight
    flashlight Member Posts: 698
    edited October 2019

    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.

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  • Daylightdancer666
    Daylightdancer666 Member Posts: 50
    edited October 2019

    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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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2020

    HI everyone,

    This is another example of a huge problem in the cancer industry. In June 2011 a study was released that the majority of women who receive lumpectomy and radiation will be in moderate to severe pain for a year. Was this ever explained to you by your doctor? Did they explain how much radiation would help you? In some women it only lowers the chance of their cancer coming back by 7%. Is that worth a year of pain...and is that right for your doctor to decide that for you by telling you you must have a treatment. Also, did he tell you that there is treatment? The only treatment is HBOT with is FDA approved for radiation pain and damage. MOst radiation oncologists do not know this. SO they give you a treatment that causes you pain, don't tell you how much it is helping you and then they don't even know how to treat it.

    I need your stories!I am currently writing a book on stage 1 breast cancer as I had a horrific experience that didn't need to happen.These ranged from gender bias where my symptoms and pain were not believed, resulting in unnecessary suffering and damage, to doctors having very little knowledge in their fields, for example Hyperbaric oxygen specialists that not only unaware that it is the only approved treatment for radiation damage, but even after giving them studies to support this, they still didn't believe me and refused treatment.

    On top of this, there is the industry's constant over simplification of guidelines (mastectomy or radiation and lumpectomy for every stage 1 BC case) and the over treatment of patients.In 2018 a study came out that 70% of early BC patients did not need chemo.Then why were they giving chemo patients that didn't need it!Why were they testing a treatment before it was administered! Women are never told how much each of these treatments will help them so they cannot weigh the benefits and costs to treatment.They are just told they have to do it.For example, some women will only receive a 7% reducing in the chance of their cancer coming back from radiation and this is according to the NCCN the governing body or cancer research. Shouldn't these women get to decide if that benefit is worth permanent damage and the possibility of severe side effects?)Then to top it off, there is no accountability in the industry (please read "Unaccountable" by Dr. Makary) and completely driven by money (please read "The Price We Pay" also by Dr Makary. Dr. Makary is a surgeon and teacher at Johns Hopkins Bloomberg School of Health)

    So I want to hear from you.Were you ever told how much different treatments will help you?Were you ever in pain and a doctor said it was in your head or it wasn't that bad?(Both of these were said to me.)Were you told about all of the side effects of treatments, before you started the treatment, such as a long-term safe effect of chemo is cardiovascular damage?Or that you would have permanent damage to your skin, muscles, ribs (and heart of it was done on your left side) from radiation?Post-cancer did you have issues and no doctor had the knowledge to help you?

    To all of my BC sisters I want to thank you for your time and we will get through this!!

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