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swyer-james syndrome

about the year 2004, i started experiencing breathing difficulties. i visited various doctors and the doctors response was i was fine. my breathing problems worrsened with sharp pains to the central and right side chest. visited more doctors.  ptf results 1 test 50%, 2 test 30%, third test 29%. chest x-ray negative. the doctors never show me the results and i was advised i was fine (at the time i did not understand pft results). 2008, pft 38% on good day. a doctor finaly agree to do ct of chest. the results puzzled the doctor. i took ct scan dvd to other doctors.  impression- swyer james syndrome. the doctors are confussed. as a child i was never sick. i was always physically acitve, playing various sports including tennis, handball, football, baseball, track and field, etc,.the only time i was sick for more than 2 days was during the year 2002. at the time i was assigned to waste landfill for investigative purposes. i visited a doctor in 2002. pft 47% treated with antibiotics and inhalers. i have no prior history of asthma or breathing difficulties. can some one help with advise on life with swyer-james syndrome? the doctors are advising removal of right lungs. would antibiotics slow down or stop this syndrome? please respond!!!!  thanks.
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242588 tn?1224271700
MEDICAL PROFESSIONAL
What you describe is somewhat confusing; specifically the PFT results you cite of “50%, 30% and 29%”.  Without further information, I have no way of knowing exactly which PFT result is described by these percentages.  But, whatever it is, if it describes one of the major functions such as Vital Capacity or FEV1 or the ratio of the two, it is grossly abnormal.  Part of the confusion is your having abnormal PFT’s with a “negative chest X-ray, negative presumably meaning normal.  One problem is how to reconcile these abnormal tests with “the doctor’s response was I was fine”.  

Swyer-James is rare and is one form of Hyperlucent Lung Disease, that can be either congenital or acquired.  That you were able to actively participate in sports suggests that the form you have is acquired.  Not all hyperlucent lungs are of the originally described  Swyer-James (McCleod) type, often associated with a small or absent pulmonary artery.  Some hyperlucent lungs are the result of obstruction (for example, a tumor) of a large bronchus and thus, potentially reversible.  Before you agree to removal of your right lung, you should definitely seek a second opinion at a major clinic (such as the Mayo Clinic) or a major lung hospital (such as National Jewish Health in Denver, Colorado).  Even if non-functional, your lung, if not repeatedly infected, may not have to be removed.  Such consultation will be well worth the time and money and might even demonstrate that all or part of your right lung is salvageable.

This is important because this is a rare condition that most doctors, even lung specialists (pulmonologists), may never see in their professional lifetime.

Good luck
Helpful - 1
Avatar universal
Thank you for your response to the post on 04/10/09, robert8430. To further clarify the PFT  test results: 1st test in 2002, FCV=45%, FEV1=52%..... 2nd test in 2007, pre-drug, FVC=52%, FEV1=50%, post drug, FVC=31%, FEV1=29%..... 3rd test in2007, pre-drug, FVC=34%, FEV1=29%, post drug, FVC=35%, FEV1= 28%..... 4th test 2008, pre-drug, FVC=75%, FEV1=75%, post drug, FVC=68%, FEV1=64%..... 5th test 2009, pre-drug, FVC=39%, FEV1=38%, post drug, FVC=30%, FEV1=31%..... 6th test 2009, pre drug, FVC=50%, FEV1=51%, post drug, FVC=30%, FEV1=33%..... The current doctor is confused by the PFT results. Particulary to the no response to bronchodilators. He ordered a VQ test, which show good flow to 90% of RT lung w/ no embolism. The doctor stated, there is no obstruction of the bronchus. I have minimal coughing or mucus. I still have strong chest pain to rt/center chest radiating to rt upper back.The breathing difficulty + pain has reduced my physical activity to very slow walk with distance no more than 500 feet.These pain intensify with cooler weather. My doctor agree with your post not to remove the rt lung. I am currently refered to Columbia Hospital in NYC. Thank you again. Hope to hear from your staff.              
Helpful - 0

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