Hi RedBear... I made a profile to specifically talk to you. I was doing research because I still have a few odd feelings after my pericardiectomy. I am a 28 year old male from California. I too had Dr. Jae Oh take over my case and oddly enough had Dr. Schaff do the operation in Rochester. I would love to get an email address from you to talk a little bit more. Hope to hear from you soon and I figured out this forum correctly.
Cardiologists aren't knowledgeable about all aspects of constrictive pericarditis because it is so rare. My cardiologist didn't know about the head pressure thing either. She also didn't know about the research being done at Mayo and the Cleveland Clinic that argued for early surgical intervention. She in fact argued against a pericardiectomy because most of her experience was with patients that had constrictive pericarditis from radiation, and that tends to have the worst prognosis. (On the positive side - people that get a pericardiectomy because of constrictive pericarditis caused by a virus or bacteria tend to have good outcomes - that's you!) So I felt that I had to become my own specialist and advocate.
The surgeons removed almost my entire pericardium. There is some research that suggests this provides the best outcome, so in fact I chose the doctor and hospital that I did because they have been big advocates of "complete" pericardiectomies. Actually, I think that there may be a small amount of pericardium - maybe 10% - that is difficult to reach because it is on the back of the heart, but that rarely poses a problem. It turns out that the heart doesn't need a pericardium, but if enough pericardium is left, it can become fibrosis and constricting.
My doctor chose to do a median sternotomy (zip scar down the chest). For him, he felt that gave him the best access, but I know that other doctors prefer other methods. Since I already had a zip scar from earlier heart valve surgery, I didn't mind it. Plus, it fades to white over time. Initially the scar reminded me of a bad time, now, 3 years later, I just don't think about it.
I am surprised that the doctors recommended not having another child. A lot of people (fortunately myself included) make a full recovery following a pericardiectomy. The doctors told me that it took me a couple of years to get sick, and that after the surgery, it would take a couple of years for my body to recover... and it did take some time. And depending upon the severity, there may be some structural changes to the heart that never get 100% back to normal - perhaps that is the case with you. But if you are fortunate to recover back to your regular self, I can't imagine why they would tell you not to have another child. I wouldn't give up on this... I would speak to other doctors, and get specific rationales.
I'm trying to recall the exact numbers from Mayo... I may be off here, but I think that they do somewhere around 60 a year, and my surgeon did most of them - maybe 3 a month - but that's pretty unusual. I would make sure that your surgeon at St. Thomas's does enough, and has had good success, and perhaps ask if there is anybody that does more of them in London. I would also ask about a mortality estimate specifically for you, that takes into account that you are (1) young, (2) your etiology of constrictive pericarditis was viral or bacterial, (3) otherwise pretty healthy (I hope), (4) only partially symptomatic (you mention that you don't feel that unwell, and research shows that people in the early stages of the NYHA Heart Failure scale respond best to surgery). These are all positive things for you!
Best of luck. I know things seem dark now, but there is a good chance you can get back to normalcy, and this might become just an unpleasant memory.