I have spent considerable time researching my condition - spontaneously collapsing lungs ("spontaneous pneumothorax") caused by congenital blebs - referred to as "bleb disease", "blebs disease", "congenital blebs disease" and even "bleb pop disease."
I have read hundreds of stories from people whose lungs have collapsed. Overwhelmingly, two themes unify our experiences: 1. Physical pain and 2. Psychological Impact
In this chapter, I discuss physical pain, which I break into three categories:
Those who suffer from our condition have likely experienced intense physical pain caused by any or all of the following: a lung collapse, a chest tube insertion, any corrective lung surgery (pleurodesis, pleurectomy, thoracotomy) and the accompanying recovery.
My own lung collapses were almost always marked by an acute, sharp pain that began in the back of my lung, in the shoulder blade area. Over the course of seconds or minutes, the pain usually spread around to the front of my chest, and sometimes into my neck, shoulder, or down my arm. The magnitude of the pain was usually alarming and I always knew right away that I needed to get to an emergency room quickly.
The first step in treating a collapsed lung is usually a chest tube insertion, which is also very painful and unforgettable. The patient is awake during the procedure and although novacaine is administered, it does not reach deep enough to effectively numb the pain. Also, it is difficult to fit a chest tube between two ribs and into the chest cavity. Lastly, the patient is at the mercy of the resident in the ER, who may or may not be experienced at inserting chest tubes. In retrospect, I often wonder why pain medicines were not administered before or during a chest tube insertion.
If a chest tube does not solve the problem and further surgery is needed, the options are also difficult. The main solution to fixing a repeated lung collapse is to scrape and scar the surface of the lung with a scalpel (a “physical pleurodesis”), or to burn the lung with antibiotics or other agent (a “chemical pleurodesis”), or to tear out the lining of the lung (a “pleurectomy”). I have undergone two physical pleurodeses, one chemical pleurodesis, and two pleurectomies. Each surgery caused significant pain and numerous complications, as chronicled in Part I of this website. Lung collapses and lung surgeries are notoriously painful because the lining of the lung (the “pleura”) is extremely well enervated and is highly sensitive to any disturbance. After lung surgery, two chest tubes are left in place for several days, adding to the discomfort of the surgery pain. The aforementioned surgeries are well known as brutal among pulmonologists and thoracic surgeons, but for now they are the only options available to treat recurring lung collapses.
Secondary (Chronic) Pain:
Unfortunately, the acute and distressing pains from an initial lung collapse and lung surgery are not the only type of physical pains encountered. Once the patient recovers from a chest tube insertion or a lung surgery, he or she often has continuing, chronic pain, due to the physical trauma of the surgery.
An article published in the European Journal of Cardio-thoracic Surgery reports that chronic pain is statistically very common after surgery to repair a collapsed lung. The article “Incidence of chronic pain after minimal-invasive surgery for spontaneous pneumothorax”, by Passlick, Born, Sienel, and Thetter, followed 60 patients who underwent a VATS Pleurodesis or Pleurectomy. Five years after the surgery, 31.7% of the patients still had chronic pain. The study also states “In the thoracotomy group the incidence of chronic complaints was 51.8%”.
The incidence of chronic pain after undergoing *one* lung surgery is very high, and unfortunately, many patients have to undergo two or more of these surgeries. I have undergone five of the above-mentioned pleurodesis and pleurectomy surgeries. The risk of chronic pain for each surgery is 31.7%. Multiply that number by five (one for each surgery I've had), and there is a 158.5% chance that someone like me will have chronic pain.
In my view, chronic pain falls into a category of its own, a separate casualty of suffering from collapsed lungs. Once the lung has been “fixed” through surgery, chronic pain sufferers are then directed to a completely new team of doctors and health care specialists in the field of Pain Medicine. Now that the lung problem has been resolved, it feels as though the patient is left with an entirely different problem requiring new doctors, treatments, medicines, and a distinctly new course of action. Unfortunately, chronic pain following a collapsed lung / lung surgery is sometimes serious or debilitating, and in some cases greatly limits the patient’s quality of life.
In high school, a classmate of mine, Greg, suffered a collapsed lung and had a chest tube inserted. He quickly returned to good health, but one year later, Greg experienced the exact same pain as during his first collapse. He rushed to the hospital, but a chest X-ray showed that his lung in fact was not collapsed. He was bewildered by the experience, as was I when I heard his story. Since then, I have heard this exact phenomenon described by scores of individuals, and I later experienced it myself on several occasions.
It is a confusing and frustrating situation. It feels as if your lung has collapsed, but an X-ray shows that it has not. Doctors neglect to offer any possible suggestion, tell you that your lung is “fine”, and send you home, confused and thinking that your mind is playing tricks on you. Deep down you know something is wrong with your lung, but nothing can be done about it.
One possible explanation is that a bleb has leaked air, *without* causing a lung collapse. This can and does happen frequently to people with our condition. If a congenital bleb (weak spot) leaks air, it will cause significant chest pain, even if the lung has not collapsed. I mention this because I know there are many people out there who are frustrated by what their doctors might describe as “unexplained pain”. For years I felt gurgling in my lung, followed by chest pain and pressure, and I knew my lung was leaking air. Unfortunately, ER doctors dismissed my complaints because a chest X-ray showed no collapse. I wish I had known at the time that I likely had actively-leaking blebs. When a bleb breaks, it leaks air from the lung. If the lung has already been surgically scarred to the chest wall, the escaping air will likely have no effect on the lung. Instead, the air will follow the path of least resistance. Air may enter the center of the chest (the media steinum), or seep into other areas of the chest cavity, up into the neck or just below the skin tissue in the collar bone / clavicle area. Regardless, if you have actively leaking blebs, you will have significant pain.
I once exchanged emails with a thoracic surgeon who had published many papers on chronic pain caused by lung surgery. He said he saw patients with “leaky lungs” quite frequently. He explained that doctors often miss this diagnosis because an air leak does not show up on an X-ray unless there is a collapse of the lung (or unless a very, very large quantity of air has escaped). He also said that even if a doctor realizes that there are actively leaking blebs, not much can be done, because surgery is not warranted unless the lung is collapsing. Even though I was disappointed that nothing could be done to help, I felt better knowing there was indeed a plausible explanation for my “unexplained pain”.
Lastly, you should also be aware that a small lung collapse is very difficult to spot on an X-ray. I once had a 5% lung collapse that an ER doctor couldn't see on X-ray (the radiologist later spotted it). I also had a 40% lung collapse that an ER doctor did not see on my X-ray (in that case the ER doctor ordered a CT scan which showed the huge collapse). Any air leak or small collapse can cause terrible pain. There's not much doctors can do to help though. In such cases, I was told to rest and hope the lung healed on its own.
I have a feeling there are a lot of people out there with a history of collapsed lungs who now experience random episodes of “unexplained pain” and I empathize greatly with all of you.
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