Pericarditis post-pericardiectomy

[selina262]

Hello to all of you who are suffering or have suffered from pericarditis. I am a twenty one year old female and have had pericarditis for three years, undergone a pericardial window and a complete pericardiectomy, Three years ago I began having chest and right shoulder pain. After several months of this, I could no longer lay flat when sleeping without significant pain. My doctor, at the time, diagnosed with me with anxiety and shoulder inflammation and prescribed Lexapro and Celebrex. I noticed a bit of relief with the Celebrex, but did not continue taking it. Nine months after the start of the pain, I woke up in the middle of the night in the worst pain of my life (up to that point). Several minutes later I passed out for approximately one minute. One month later I passed out twice in one week for unknown reasons. I went to a new doctor after I started vomiting and the pain was unbearble. He did a chest x-ray and saw what he believed was an enlarged heart and sent me by ambulance where I underwent an emergency pericardial window where 500 cc of fluid was taken off my heart. They told me I had cardiac tamponade and heart failure. I recovered, but continued to have persistent bouts of chest pain, arm pain, back pain, jaw pain, shoulder pain. The chest pain worsens on inspiration, leaning over, moving, lying flat, laughing, swallowing....I feel tired. I have tried Prednisone, Indocin, Colchicine, Ibuprofen, and Alieve. For pain I have tried hydrocodone, Fentanyl, and now am taking Lyrica. One year ago I had a complete pericardiectomy at the Mayo Clinic in Rochester Minnesota (we live in Texas). It went well, but I continue to have "pericarditis-like" symptoms. It is very painful and disrupts every aspect of life. If anyone has any ideas on alternative treatment options, alternative diagnoses, or a similar story, please share it with me. I am desperate. Thank you....


This discussion is related to Persistent Pericarditis.

[BigRedDog24]

Hi Francee and Selina! Wow 6 years later but this is the first post ive found with Pericardiectomy survivors who had the operation young like me. Im 24 and in the UK. I had a total pericardiectomy 5 weeks ago after 6years of undiagnosed constrictive pericarditis. Im really curious to see how youre both doing 6 years later? Did you manage to sort out your post-op symptoms? How has the op affected your life since 2010? I cant wait to be able to exercise again. Oliver x

[francee1679]

Hi! I am 27 and have had undiagnosed pericarditis for almost 10 years. I was diagnosed October 2009, and throughout the year dealt with the inflammation with Indocin, Prednisone and Methotraxate..all with failure. I had a pericardiectomy 3 months ago in August 2010, and this past week have again felt percarditis-like pain. My doctor is trying colchicine and extended-release indocin. I'd love to know what is causing this newfound pain. I was doing so well for 3 months, and I thought this journey was over. I am otherwise healthy (no infection, no disease)..so I believe my condition is idiopathic. Let me know if you hear any news!