Discussions By Condition: I cannot get a diagnosis.

Rib pain 4 years after lung removal and lung cancer treatment

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: peppernlm
  • March 12, 2007
  • 11:13 PM

I'm a 4 year lung cancer survivor. One year ago, I developed what is now chronic pain. I have 3 scars. 1) Along the left back rib area where left lung was removed. 2) Front chest area. Pericarditis scar. Surgery performed to remove 1 liter of fluid in pericardium - side effect of radiation therapy. 3) Left clavical area. Port insert and removal to aid chemo-therapy.
The pain radiates along the pneumonectomy scar, is constant under my left arm, the tissue surrounding my left breast, and a numbness over my heart, to the left of the pericarditis scar. I will often get a muscle spasm along the scar and up the left side of the spine.
Things that make it worse are: wearing a bra of any sort for long periods, lying on my back sleeping, lying on my side sleeping, touching the area, walking in bare feet, slouching, weight lifting at the gym, long periods (>1/2 hour) of walking. Things that make it better are: heating pad and leaving my home and just blocking it out mentally with lots of activity, however, this requires a bra, NASID'S which I use very seldom. My sleep is disrupted to the point of chemical dependency. I will go for several days with intermittent sleep and then give into one or two nights of Lunesta or Xanax for sleep. Otherwise, I'm up every one or two hours with muscle spasms that need heat, stretching or movement for relief.
My question is what are the underlying physiological causes that may occur so many years after the surgeries resulting in this type of pain? I lived 3 years after the pneumonectomy and 2 years after the pericardial operation with much less pain. Then another year goes by and my physical capacity is cut in half with pain, sleeplessness and associated weakness.
Most importantly, where do I go for diagnosis. I went to one neurologist and he just wanted to give me a shot for pain. I don't want relief until I have a good diagnosis. I'm at a loss as to try another Neurologist, Orthopedic surgeon, or rheumotologist. What do you recommend.
My internist sent me to the neurologist that just wanted to give me the pain med. I don't believe pallative meds are appropriate without at least attempting a diagnosis.

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10 Replies:

  • Hi Pepper,The first thing that came to my mind was some kind of adhesion of scar tissue. But I don't know why it would have waited so long. The second thing that came to mind was maybe you got a rib out of place, and it is mixing with all your previous issues in that area, and causing a great deal of pain.You might have something seriously wrong, but I am no specialist in that area, and can't think of what, but if it were me, the first specialist I'd go to would be a really good chiropractor, who has specific experience dealing with people who are post-surgery. This may not fix the problem, but if it does, that sure would be an easy fix. Another possibility might be a pain specialist, also called a physiatrist (not a psychiatrist!) who are good at diagnosing pain, and helping deal with it. Sometimes pain is a good way to know something major is wrong that needs fixing. But often pain is something essentially benign, that just needs to be dealt with. Meanwhile, maybe someone else has another idea for a more "mainline" medical doctor, in case it is telling you that something inside there needs medical treatment.Good luck...it sounds quite debilitating. I hope you get it figured out soon.Best,Shulamit
    Anonymous 42,789 Replies Flag this Response
  • Hi Pepper,I had a lung removed last year and I get a radiating pain from the top of the scar up into my neck. There are usually two causes, either I overdo working or the cold. When I have overdone my chropractor can relieve the pain.I know what you are saying though, sometimes there is just no relief, but thank God I am here to feel the pain. Try a good chroprator, it makes a world of difference.
    Jennysredrose 1 Replies
    • November 12, 2007
    • 03:36 AM
    • 0
    Flag this Response
  • I have had my lung removed 8 months ago and have a lot of pain. My doctor has me on oxycontin and oxycodone. I am hoping to rid myself of this pain soon. He wants to to have a scan done. Had a ct scan done and every thing was good. I have the exact pain as you and it is driving me nuts. I hate being on these pain pills but I have no choice.
    Flagstone 1 Replies Flag this Response
  • I'm a 4 year lung cancer survivor. One year ago, I developed what is now chronic pain. I have 3 scars. 1) Along the left back rib area where left lung was removed. 2) Front chest area. Pericarditis scar. Surgery performed to remove 1 liter of fluid in pericardium - side effect of radiation therapy. 3) Left clavical area. Port insert and removal to aid chemo-therapy. The pain radiates along the pneumonectomy scar, is constant under my left arm, the tissue surrounding my left breast, and a numbness over my heart, to the left of the pericarditis scar. I will often get a muscle spasm along the scar and up the left side of the spine. Things that make it worse are: wearing a bra of any sort for long periods, lying on my back sleeping, lying on my side sleeping, touching the area, walking in bare feet, slouching, weight lifting at the gym, long periods (>1/2 hour) of walking. Things that make it better are: heating pad and leaving my home and just blocking it out mentally with lots of activity, however, this requires a bra, NASID'S which I use very seldom. My sleep is disrupted to the point of chemical dependency. I will go for several days with intermittent sleep and then give into one or two nights of Lunesta or Xanax for sleep. Otherwise, I'm up every one or two hours with muscle spasms that need heat, stretching or movement for relief. My question is what are the underlying physiological causes that may occur so many years after the surgeries resulting in this type of pain? I lived 3 years after the pneumonectomy and 2 years after the pericardial operation with much less pain. Then another year goes by and my physical capacity is cut in half with pain, sleeplessness and associated weakness. Most importantly, where do I go for diagnosis. I went to one neurologist and he just wanted to give me a shot for pain. I don't want relief until I have a good diagnosis. I'm at a loss as to try another Neurologist, Orthopedic surgeon, or rheumotologist. What do you recommend. My internist sent me to the neurologist that just wanted to give me the pain med. I don't believe pallative meds are appropriate without at least attempting a diagnosis.When surgery is done for Lung Cancer, surgeons need to go in between the ribs in order to get at the Lung Cancer. Unfortunately, the only way to do that, is by cutting through the nerves that are between the ribs. When nerves are cut, they hurt for a long period of time. The reason for this is because nerves grow very, very slowly. For this reason, the place where the nerves were cut, will continue to hurt for a long time - even years after the surgery. Some mild pain medicine from your doctor can help with this until little by little the discomfort is more bearable. I hope this helps.
    Anonymous 42,789 Replies
    • August 12, 2010
    • 08:34 PM
    • 0
    Flag this Response
  • I have had the majority of my left lung removed, and my surgeon decided to use the cerfolio technique and wrap the remaining portion of my top lung in the muscle that lines the inside of the ribs. I always have some discomfort in my muscles in the area and did have some intense muscle spasming to the extend I could not raise my arms or lift myself out of the tub. I was prescribed a muscle relaxer and went through physical therapy and obtained a TENS unit. I agree with not wanting to stay on pain medication. My chiropractor helps also.
    Anonymous 42,789 Replies
    • August 18, 2010
    • 10:13 PM
    • 0
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  • I agree with the person who said it is nerve pain. My pulmonary doctor told me that the chronic pain I am in from having the lung lining removed, and a rib removed also from pnuemonia that I had, are from the nerves being cut. She told me the pain will outlive me. My surgery was 3 years ago. Lidoderm pain patches help greatly (for me). I was also on morphine for almost 2 years along with vicodeine which I am still on. The pain gets so intense I have to take somethhing to ease it. I only take it when absolutely necessary. Godd luck to you.
    Anonymous 42,789 Replies
    • October 29, 2010
    • 01:55 PM
    • 0
    Flag this Response
  • Hi everyone, just been having a look at some of the posts. This information is really helpful to me. I also had a large section of my left lung removed due to pneumonia, empyema, and also a pneumothorax. This happened to me around 19mths ago and I am only 32yrs old. The pain was horrific and I still have pain now. I was in hospital today because the chest pain I have been having has been really unbearable. I have been put back on a high dose of pain relief. It's just really helpful to speak with others who have experienced this also.
    Nichola 3 Replies
    • February 28, 2011
    • 11:17 PM
    • 0
    Flag this Response
  • I have had my lung removed 8 months ago and have a lot of pain. My doctor has me on oxycontin and oxycodone. I am hoping to rid myself of this pain soon. He wants to to have a scan done. Had a ct scan done and every thing was good. I have the exact pain as you and it is driving me nuts. I hate being on these pain pills but I have no choice.Really feel for you! Being on pain relief all the time is hard because some of the medicines are so strong they leave you feeling wiped out completely.
    Nichola 3 Replies
    • February 28, 2011
    • 11:19 PM
    • 0
    Flag this Response
  • Really feel for you! Being on pain relief all the time is hard because some of the medicines are so strong they leave you feeling wiped out completely.Just had 3rd of lung removed 7 weeks ago. Nerve pain is driving me crazy. After readingall the blogs I know how bad you all feel. I hope that your pain gets better and that I ambeing impatient
    Anonymous 42,789 Replies Flag this Response
  • Just had 3rd of lung removed 7 weeks ago. Nerve pain is driving me crazy. After readingall the blogs I know how bad you all feel. I hope that your pain gets better and that I ambeing impatientAh sorry to hear you have been through surgery. Meditation really helped me. Their is a book I read by a guy called Gregg Braden called 'The Spontaneus Healing of Belief' it really helped me.x
    Nichola 3 Replies Flag this Response
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