I was born with a chest wall deformity called pectus excavatum or "sunken chest" syndrome. When I was a child, my mother was told that it would have little, if any, affect on me later in life. As I got older I was diagnosed with severe reverse "S" curve scoliosis. I also had problems with my breathing as my lungs started to get bigger in my small, sunken chest. Of course my bones would grow, but with the sternum sunk in, there was not much space for the lungs and heart and other organs.
Pectus excavatum occurs in an estimated 1 in 300-400 births, with male predominance (male-to-female ratio of 3:1). Imagine that! I'm a girl, just my luck. Some patients with pectus excavatum experience chest and back pain that is usually musculoskeletal in origin.
Pulmonary function
Doctors have observed that many patients with pectus excavatum tend to become symptomatic during their teenage years or early in adult life. Patients younger than 10 years who have pectus excavatum do not typically experience symptoms associated with shortness of breath. I began feeling my shortness of breath and difficulties when in high school during heavy exercise gym classes. I even spent 7 years in the military with decreased pulmonary function.
Cardiac function (All of this info is technical and here for a reason. You will see soon why. Please read it, it is informative for my disease.)
Displacement of the sternum in pectus excavatum can produce a deformity of the heart, with anterior indentation of the right ventricle. Early pathologic studies demonstrated this finding, and a series of early case reports included cardiac evaluations for patients with severe symptoms. Angiographic studies have demonstrated the sternal imprint on the anterior wall of the right ventricle.
Several studies have demonstrated limitation of cardiac stroke volume in patients with pectus excavatum, particularly in the sitting, or upright, position. When patients with pectus remain in the supine position (lying flat), no significant impairment to cardiac function is apparent. Further evidence has suggested that operative repair of pectus results in normalization of the cardiac function.
Physical
The hallmark of pectus excavatum is the caved-in appearance of the anterior chest. As mentioned above, the severity of the defect and the asymmetry of the chest widely vary. Patients may present with a very mild form of pectus excavatum or their sternum may be almost touching the spine. Typically, the lower third of the sternum is more involved, and the upper third may appear fairly normal. A compensatory anterior flaring of the lower ribs at each costal margin is also common. Many patients have associated scoliosis, but this is not directly related to the presence of pectus excavatum. My pectus is severe towards the middle and bottom. It crushes my heart and lungs but I do not think it touches my spine. At least not yet.
Auscultation of the chest: Heart sounds are typically displaced to the left side because of displacement and rotation of the heart. A click sound of mitral valve prolapse may be present. Lung sounds are clear, but the lung sounds may appear diminished at both bases because of decreased pulmonary volumes.
Pectus posture: The term pectus posture refers to the position assumed by most patients with significant pectus excavatum. They appear to create an anterior curvature of the thoracic spine with the shoulders slumped forward. Whether this is a subconscious maneuver to hide the chest wall deformity or a postural defect directly related to pectus excavatum is unclear. Such positioning of the spine appears to accentuate the pectus excavatum and can generate spine problems related to poor posture and inadequate spinal support. Correcting this posture is quite difficult, even after successful repair of the pectus excavatum.
Causes
The cause of pectus excavatum is unknown. It probably originates from a genetic defect that results in abnormal musculoskeletal growth. The cartilaginous portion of the rib is very likely the main source of this abnormal growth pattern. Abnormalities of rib morphogenesis and growth are the most likely causes of pectus excavatum and pectus carinatum. In pectus excavatum, the sternum is thought to be pushed in by abnormal growth at the articulation with the ribs and cartilage. Again, the exact mechanism that results in this abnormal growth pattern is not known. Increased work of breathing, as is observed in young patients during exercise or play activity, may contribute to the progression of the pectus deformity, particularly during early the teenage years. However, no scientific evidence supports such a theory. (Courtesy of eMedicine)
With all that medical mumbo jumbo said I come to my MIA status and why. (I am going to ASSUME a couple of weeks before my husband left this happened because it was the only time I really felt like crap.) I had been feeling overly tired lately and "off" so I decided to head on over to the doc and see what was up. I explained that I had thought I had a pulled muscle in my arm/shoulder and that the pain was in my chest too and it was making it hard to breathe sometimes. She didn't like my explaination nor did she like the way I looked. The nurse took my oxygen level because I was out of breath and it was 100%, my blood pressure was normal but they still wanted to do an EKG just to be "safe". I didn't care, I was just tired. Anything to lay down, it was easier to breathe and my chest didn't HURT when I was on my back. So they hook me up, do the test and the nurse looks at it, asks how old I am and then says she'll be right back. The doc comes in and says "No wonder you look like shit. Looks like you had a mild heart attack. Something going on in your life?" I explained to her about the hubby leaving and that I was a bit stressed out and all and I was like wait, what? And she said, oh it's probably nothing, let's do another EKG to make sure they put the probes in the right place. So the other nurse comes in, puts the probes in a different place, does the test and then just leaves me laying there still hooked up. By that point I am FREAKING out because she just LEFT. She comes back and says, ok, one more time. She does it one more time and then says "Yep, still the same, see?" And shows me the three tests that look totally normal to me. Like a graph with lines. Nothing. I know NOTHING about EKGs. They both come back into the room and say I have to go to the hospital RIGHT NOW and have more tests done to make sure I am not currently having a heart attack. I looked at them like they were on crack! I mean wouldn't I KNOW if I was having one?? Obviously NOT since I had already had at least one before that day.
So they order me a CT scan and chest xray to rule out anything abnormal in my lungs and off to the hospital I go. I was so scared. I got to my truck, called Mrs Paruser and said "I'm in trouble" and just started BALLING. Of course she was at my house shortly after I got there with her smiling face and her smiling baby. She came with me to the hospital and then went back to my house to be with my kids so I could go back to my doc for the results. Once I got the initial results of "not life threatening" I was so much better. I was given a few things to try to rule out the normal things like heart burn, acid reflux, asthma, etc but they didn't work. When I finally went back on Friday I was told I had some inflammation around my lungs and heart and was given some steroids to help with the inflammation and vicodin for the pain.
I have to have some pulmonary and cardiac function testing done now. I can, even at my age, have the surgery to correct the pectus IF that is what is causing my heart to "attack". All of the initial testing came back clear. No blocked arteries, nothing abnormal except for the fact there just isn't any room in there for me to GET sick if my body decides to. My heart is off to the side instead of in the middle of my chest. There is physical stress on it as well as all the mental and emotional stress I have in my normal, everyday life. Now I have to be careful because something triggered this and next time I just might feel it really good! Next time I might not be lucky enough to walk around just tired.
Pectus excavatum occurs in an estimated 1 in 300-400 births, with male predominance (male-to-female ratio of 3:1). Imagine that! I'm a girl, just my luck. Some patients with pectus excavatum experience chest and back pain that is usually musculoskeletal in origin.
Pulmonary function
Doctors have observed that many patients with pectus excavatum tend to become symptomatic during their teenage years or early in adult life. Patients younger than 10 years who have pectus excavatum do not typically experience symptoms associated with shortness of breath. I began feeling my shortness of breath and difficulties when in high school during heavy exercise gym classes. I even spent 7 years in the military with decreased pulmonary function.
Cardiac function (All of this info is technical and here for a reason. You will see soon why. Please read it, it is informative for my disease.)
Displacement of the sternum in pectus excavatum can produce a deformity of the heart, with anterior indentation of the right ventricle. Early pathologic studies demonstrated this finding, and a series of early case reports included cardiac evaluations for patients with severe symptoms. Angiographic studies have demonstrated the sternal imprint on the anterior wall of the right ventricle.
Several studies have demonstrated limitation of cardiac stroke volume in patients with pectus excavatum, particularly in the sitting, or upright, position. When patients with pectus remain in the supine position (lying flat), no significant impairment to cardiac function is apparent. Further evidence has suggested that operative repair of pectus results in normalization of the cardiac function.
Physical
The hallmark of pectus excavatum is the caved-in appearance of the anterior chest. As mentioned above, the severity of the defect and the asymmetry of the chest widely vary. Patients may present with a very mild form of pectus excavatum or their sternum may be almost touching the spine. Typically, the lower third of the sternum is more involved, and the upper third may appear fairly normal. A compensatory anterior flaring of the lower ribs at each costal margin is also common. Many patients have associated scoliosis, but this is not directly related to the presence of pectus excavatum. My pectus is severe towards the middle and bottom. It crushes my heart and lungs but I do not think it touches my spine. At least not yet.
Auscultation of the chest: Heart sounds are typically displaced to the left side because of displacement and rotation of the heart. A click sound of mitral valve prolapse may be present. Lung sounds are clear, but the lung sounds may appear diminished at both bases because of decreased pulmonary volumes.
Pectus posture: The term pectus posture refers to the position assumed by most patients with significant pectus excavatum. They appear to create an anterior curvature of the thoracic spine with the shoulders slumped forward. Whether this is a subconscious maneuver to hide the chest wall deformity or a postural defect directly related to pectus excavatum is unclear. Such positioning of the spine appears to accentuate the pectus excavatum and can generate spine problems related to poor posture and inadequate spinal support. Correcting this posture is quite difficult, even after successful repair of the pectus excavatum.
Causes
The cause of pectus excavatum is unknown. It probably originates from a genetic defect that results in abnormal musculoskeletal growth. The cartilaginous portion of the rib is very likely the main source of this abnormal growth pattern. Abnormalities of rib morphogenesis and growth are the most likely causes of pectus excavatum and pectus carinatum. In pectus excavatum, the sternum is thought to be pushed in by abnormal growth at the articulation with the ribs and cartilage. Again, the exact mechanism that results in this abnormal growth pattern is not known. Increased work of breathing, as is observed in young patients during exercise or play activity, may contribute to the progression of the pectus deformity, particularly during early the teenage years. However, no scientific evidence supports such a theory. (Courtesy of eMedicine)
With all that medical mumbo jumbo said I come to my MIA status and why. (I am going to ASSUME a couple of weeks before my husband left this happened because it was the only time I really felt like crap.) I had been feeling overly tired lately and "off" so I decided to head on over to the doc and see what was up. I explained that I had thought I had a pulled muscle in my arm/shoulder and that the pain was in my chest too and it was making it hard to breathe sometimes. She didn't like my explaination nor did she like the way I looked. The nurse took my oxygen level because I was out of breath and it was 100%, my blood pressure was normal but they still wanted to do an EKG just to be "safe". I didn't care, I was just tired. Anything to lay down, it was easier to breathe and my chest didn't HURT when I was on my back. So they hook me up, do the test and the nurse looks at it, asks how old I am and then says she'll be right back. The doc comes in and says "No wonder you look like shit. Looks like you had a mild heart attack. Something going on in your life?" I explained to her about the hubby leaving and that I was a bit stressed out and all and I was like wait, what? And she said, oh it's probably nothing, let's do another EKG to make sure they put the probes in the right place. So the other nurse comes in, puts the probes in a different place, does the test and then just leaves me laying there still hooked up. By that point I am FREAKING out because she just LEFT. She comes back and says, ok, one more time. She does it one more time and then says "Yep, still the same, see?" And shows me the three tests that look totally normal to me. Like a graph with lines. Nothing. I know NOTHING about EKGs. They both come back into the room and say I have to go to the hospital RIGHT NOW and have more tests done to make sure I am not currently having a heart attack. I looked at them like they were on crack! I mean wouldn't I KNOW if I was having one?? Obviously NOT since I had already had at least one before that day.
So they order me a CT scan and chest xray to rule out anything abnormal in my lungs and off to the hospital I go. I was so scared. I got to my truck, called Mrs Paruser and said "I'm in trouble" and just started BALLING. Of course she was at my house shortly after I got there with her smiling face and her smiling baby. She came with me to the hospital and then went back to my house to be with my kids so I could go back to my doc for the results. Once I got the initial results of "not life threatening" I was so much better. I was given a few things to try to rule out the normal things like heart burn, acid reflux, asthma, etc but they didn't work. When I finally went back on Friday I was told I had some inflammation around my lungs and heart and was given some steroids to help with the inflammation and vicodin for the pain.
I have to have some pulmonary and cardiac function testing done now. I can, even at my age, have the surgery to correct the pectus IF that is what is causing my heart to "attack". All of the initial testing came back clear. No blocked arteries, nothing abnormal except for the fact there just isn't any room in there for me to GET sick if my body decides to. My heart is off to the side instead of in the middle of my chest. There is physical stress on it as well as all the mental and emotional stress I have in my normal, everyday life. Now I have to be careful because something triggered this and next time I just might feel it really good! Next time I might not be lucky enough to walk around just tired.
If you got this far, thank you for reading. If YOU have a story or know someone who does, please feel free to forward their story and a picture of them to me for another Awareness Wednesday to goudegirl03@aim.com
8 comments:
I am really sorry that you have had to go thru this. Thank goodness for your friend being there to help out.
Hang in there honey, because you do have a really strong, beautiful family and you'll all be together again as soon as it's possible. Just take one day at a time. Easier said than done, right? But really, the good news is that your tests are all pretty good, you can have have a procedure in the future if you need/want to and you are dealing with it, processing it all, getting it out.
Whatever things you really enjoy that relieve stress of course are what's important to try and do... reading, yoga, meditating, vegging in front of mindless t.v. WHATEVER those things are, just try and DO them as often as possible.
I was in the ER last weekend myself. Turned out to be an inner ear virus but I really understand what it is like to not feel well with different issues. I've been thru heart testing for assorted reasons too and it's all very scary at times, I really do know!
But there are people who do care, who understand. So just try to take things slow.
Thinking of you, wishing you the best.
Hug, Mary
That is beyond scary! I can't imagine how you felt laying on the table while they were taking EKGs. My husband had a mild heart attack a few year back--I can never remember when because I blocked it out. He's an RN now and I still freak when anything related to his heart, chest etc. happens. I have to say that you are really up on what is going on with yourself as far as the pectus excavatum stuff, and this new thing is scary but you've done scary before so I'll bet you will handle it okay. I can tell:) I also have to say that it's very cool that you have Mrs Paruser there for you. She sounds awesome:) By the way, I found you through BATW-- I'm not just a completely lame stranger!
In pectus excavatum, the connective tissue that joins the ribs to the breastbone is overgrown, causing the sternum to curve inward. This gives the chest a hollow appearance. Pectus excavatum can impair cardiac and respiratory function, and cause pain in the chest and back. Know more http://complimentarymedicine.tv/story_1595.html
Alright I'm not a mom or anything but here goes. I've had PE since around the age of 15 (I'm 19 now), and had The Nuss Procedure done 2 years ago. What sucks is that even though I have two titanium bars pulling up my chest wall, I still feel the pressure on my right rib cage (which is still sunken). It's a terrible feeling. I get anxiety, loads of difficulty breathing, and my stress level is through the roof, even when nothing is going on. Before I had surgery done, I never had any trouble breathing. But then again, I was younger, and my lungs probably weren't fully developed, which means I wasn't feeling any pressure. NOW, however, it's starting to become a problem. I used to be a dedicated martial artist and enthusiastic athlete. Now I can't even sit on this chair without having a hard time getting air into my lungs. It really sucks. I don't know what to do. I've already had surgery, but for some reason I feel like it didn't help much I'm doing breathing exercises too, but the effect is extremely minimal for the amount of effort I put into them. My doctors have all told me that I'm perfectly healthy, just like you. Maybe it's a psychological issue? I don't know. All I know is that I'm different now. I can't relax at all, and I'm always consciously breathing...sounds like I'm possessed or something haha. I haven't come up with any good ways to help my breathing, so I hope this doesn't further depress you or anything...but I understand what it's like.
Good luck.
I'm working incredibly hard to correct my pectus excavatum naturally through exercise. After 3 years, I'm seeing significant results. See more of my story and photos here: http://pectuscorrectus.blogspot.com/
Wow! It's really nice to hear from someone else who understands the crazy side effects of PE. I'm 22 and a girl with moderate to severe PE and have been having heart palps and breathing issues related to it. Have mild scoliosis toi because of it.
Few people, even doctors, get what this is let alone get how it effects a girl's emotions. Going through the process now of setting up the Nuss procedure. Scared outta my mind, but will do anything to alleviate the heart lung stuff.
Hope your health has improved and stress had gone down!!
Hi, I realize this is an old post, and am not sure you will read this, but here goes...I am 46, mom of three little kids, high-stress, etc...But fit, thin, blah blah, not a typical "heart-attack" risk. But I had PE as a child which was repaired in 1971 with the Ravitch procedure. My PE was SEVERE. I was unable to run, or even walk upstairs as a child without nearly passing out, I couldn't get enough air. Operating was not "optional," it was a must for me to live anything resembling a normal life. Fast forward to my 17th year--I go in for jaw surgery (I had a few skeletal abnormalities, jaw too), and before they put me under, the anesthesiologist who'd asked for chest x-ray came running down the hall to say I had enlarged heart. Turned out I did NOT, it's just that my heart is deformed b/c it was squashed between my sternum and spine for 6 years. It is flatter and wider than normal. Fast forward through three relatively normal pregnancies (some palpitations, nothing major) to now, and I am suddenly having bizarre symptoms that are VERY scary. The other night, I thought I was going to die. I woke up very thirsty, went to get water and shortly after drinking it, I became very sick feeling, nauseous, lightheaded, tingling in my arms, and a feeling I would faint. This was quickly followed by a panicky feeling out of nowhere that I was going to die, imminently. I got up to get my husband and collapsed on the floor, but once I got there, lying flat, I felt better, like my blood pressure was getting more "normal," so we didn't call 911. I thought it was dehydration, too much wine with dinner, maybe hypoglycemia....But the whole next day I felt AWFUL, exhausted, still nauseated, no appetite, tight chest/trouble breathing or so it seemed, but hard to tell if it was anxiety or real. Went to Dr.--not my regular doc, she was not in--and she said I had anxiety, or maybe just dehydration. I practically had to beg to draw blood. I told her I felt really unwell, she said I just fainted from "unknown causes," called it "vasovegal" response triggered by drinking too much water too fast. HUH? Anyway, that was Sunday morning. It's now thursday. I've felt awful all week, and today I took my little girl to Target, and about 15 min after arriving, I got confused, disoriented, lightheaded and wobbly on my feet, like I had to lie down IMMEDIATELY or I would faint. I felt my blood was NOT going where it needed to go. I lay down right in the aisle. About 10 min later, I started to feel more normal, but again, afterwards, and even now, hours later, I feel just dreadful.SUPER tight in my chest. I know this sounds weird, but I was almost sure I had a heart attack the other night, but the dr. almost laughed at me for suggesting it, didn't even think to send me to card. But today, I called my regular dr. and she put in a "stat" order for a table-tilt test tomorrow with a cardiologist, so I guess I'll get to see one, but I really want to demand an EKG. I'd LOVE to be wrong, believe me! But do you think I'm crazy? I just don't 'feel like my heart is pumping right, and no one believes me! Any thoughts/tips based on your situation and the years since? Thanks for your help!
Deb- are you still reading this blog? I have similar PE issues and the wierd feinting heart symptoms. I am getting all this evaluated at this time. Surgery to correct the PE seems extreme- but symptoms continue to plague me. I'm female 51, failed Ravitch procedure in 1969.
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