I want to relate my strange past year and ask for recommendations that any of the forum veterans can offer. I am one of those dangerous people who type faster than I think, so I apologize in advance for my writing style and misspellings.
I am a 40 year old husband to a beautiful wife and father of two wonderful school kids. I live in a small town in Central Florida, about an hour and a half south of Orlando. I lost my job due to the problems listed below and am awaiting a decision on disability from the SSA.
In January of 2009, I had a bout of severe chest pain radiating down my left arm. I was admitted to one of the local hospitals and diagnosed with pericarditis. I was released a few days later. NSAID's and antibiotics seemed to clear things up and no damage was detected in subsequent testing. I was told at the time that it may recur, but that it didn't.
Jump to June 2010. I was again admitted to the same hospital after experiencing dizziness, chest pain, shortness of breath, and very high blood pressure after nearly passing out behind the wheel on my way to work. After some testing in the local hospital (Echo, EKG, CT Scan) and Tampa General (Cardiac MRI), I was diagnosed with disorder requiring the implantation of an ICD (defibrillator). The disease is referred to as Arrhythmogenic right ventricular dysplasia (ARVD) and is quite rare.
During the ICD implantation, my right ventricle was perforated and started to leak. The hole was discovered 24 hours later and I was life-flighted to Tampa for an emergency pericardiocentesis. After a few days at the hospital in Tampa, I was sent home with a clean(ish) bill of health.
During a routine echo a month later, it was discovered that the ICD lead had perforated my heart once again. I was once again sent to Tampa General, this time to have open chest procedure to replace the internal ICD leads with epicardial patches on the outside of the heart. I recovered relatively well and was released from the hospital in less than a week.
about two weeks after this last surgery, I was experiencing extreme pain in my chest that radiated down my left arm. The home pain meds did nothing to alleviate it, so I again went to the local hospital for relief. At this point, the doctors diagnosed pericarditis caused by the surgery (Dressler's Syndrome). A couple of days later, I was released and sent home to heal.
Over the next several months, I was in and out of the hospital with the same symptoms. I was treated with a large variety of medication includine Steroids, NSAIDs, narcotics (short term), nerve pain medication, colchecine, water pills, etc... I don't mention them all by name because I don't remember them and they didn't work.
In May of this year, I was fed up with being so miserable and went to visit the Johns Hopkins ARVD program and attend their annual educational seminar. The specialists at Johns Hopkins reviewed my case, including the original diagnostic MRI's and Echos. Their conclusion, backed up with a genetic test was that I most likely did not have ARVD and did not likely need the ICD. My original problems remain undiagnosed.
Several temper tantrums and new doctors later, it has been determined that my ongoing problems are probably due to either Pericarditis or irritation caused by the epicardial ICD leads. My new doctors are relatively confident that a combined surgery to remove some or all of my pericardium should relieve some of my symptoms. While I am open, they want to also have a biopsy taken of the heart to help determine what other causes could exist for my original symptoms.
My most immediate problem is that none of the doctors consulted, including the doctor who invented the epicardial ICD patches at Johns Hopkins, have ever heard of a surgery like this being done. Removing the pericardium is unusual. Removing epicardial ICD patches is even more so. Doing both at the same time may be unique.
The surgeon that performed the epicardial implant (not the one who punctured my heart) was recommended for the job. His name is Dr. Christiano Caldiera. He is mainly a transplant doctor out of Tampa General.
What I want to know is, does anyone else have a suggestion for a surgeon who has done all or part of this "unique" surgery? My preference is for the surgery to be done in Florida, but I will entertain travelling if it means using the best.