I just wanted to add a few more things to anyone going through this. I was told prior to surgery; after visiting Cedar Sinai Medical Center, and The Mayo Clinic in Rochester; and finally at the Cleveland Heart Clinic, that the surgery (pericardiectomy) has a high mortality rate and thus the reason I had postponed my surgery for so long. When I was diagnosed, I had a record breaking 11mm's of calcification on my heart and my heart was severely constricted. I am 44 years old; and the surgery was two years ago. I did NOT have to go on a heart/lung machine; and the surgery took four hours; and I was released from The Cleveland Clinic after five days. As others have reported, the surgery is no picnic, the tubes, probably being the worse part and having it done the way I did, under the breast; and through the ribs is a bit more painful than the sternum, (all surgeons I have found do it that way; and Dr. Lytle is the only surgeon that has perfected that technique). Although it is a bit more painful, due to going through muscle and nerves, and the sternum doesn't have that, it was worth it for me, being a woman, and not wanting the "zipper scar" down the middle of my chest. The bottom line is I was told I could die in surgery; and that they had not seen a patient with as much calcification as I had, so I was one of the worst cases any hospital had ever seen. With that being said, I AM LIVING PROOF that having a pericardiectomy with a SKILLED SURGEON can not only save your life, as it did in my case, my CHANGE your whole life. TWO years post surgery, its like it never happened. I want to give back to this forum, as it had given so much too me when I could hardly find anything on this topic; and was told how "RARE" it is. I no longer believe it is that rare, I just think it goes misdiagnosed so much. The bottom line is, if you have this, do not postpone surgery, the sooner you can have it done, the sooner you can lead a normal life again. This literally ran my life for over five years; and I was practically bed-bound due to the symptoms. A pericardiectomy is THE CURE for constrictive pericarditis......BUT ONLY IF you go to a SKILLED SURGEON that has performed these surgeries before. I have heard disasterious results going to surgeons who want to attempt the surgery, and have not done them before. That being said......The Cleveland Clinic was the answer for me; and my insurance covered 100% of the cost. The Mayo Clinic is another great hospital. I would have had the surgery there, but opted as I mentioned above with Cleveland, as he is the only one that goes between the ribs, under the breast, rather than having to saw open the ribs, and go through the sternum, and being a bit vain, I didn't want that scar. BUT, the scar is the least of anyone's worries with this problem, and both hospitals are incredible. Cedar-Sinai would NOT even operate on me, as my case was to severe, they refused to operate on me, which then lead me to Mayo, then on to Cleveland for answers.
I hope that I can help someone that is in the position I was in. Sick, afraid; and unable to find a surgeon that knew what he was doing. I live in Las Vegas, and went to over 10 surgeons that had no clue what to do; and thus the reason I traveled to the three other hospitals. Cleveland was the answer for me; and provided the results I mentioned above. A COMPLETE RECOVERY. The recent MRI results showed as if I never had constrictive pericarditis, and I am cured and living a normal, healthy life after a long road of sheer fear and stumbling through the system due to what they say is the "rarity" of this condition. I was on this forum for over two years, and its not rare. I still have thyroid problems, and wonder after being on this forum, if it has something to do with this condition, as almost everyone I spoke to that had this, had an underactive thyroid. Mine is controlled my medication; and that is the only problem that I am left with. Easily treatable with medication. Well, that is my story, and I just want anyone to know that finds this forum that their is hope and full recovery with a pericardiectomy and the SUPPORT OF THIS GREAT FORUM!!! Cathy