Malignant Heart Arrhythmia's

[Mom2four85]

Thank you in advance for your time.  

How do I go about finding a proper diagnosis when dr's I've been to only treat the immediate symptoms and won't take the time to go over my entire case?   I know I have a very complex case and was told by my last cardiologist I expected too much from him, I dread finding a new doctor in Jan, which will be limited by new insurance.

I tried 5 or 6 different BB's and Midodrine; they left me incapacitated for over a year, I took myself off and started feeling somewhat better, but still with problems.  Even with meds & a pacemaker/ICD I still have shortness of breath, fatigue, "choking" feeling, arrhytmia's, VT runs, chest pain, bp/hr rollercoaster rides, LE and abdominal edema

This is what I have wrong that testing or surgery has found, any suggestions?

Very frequent complex ventricular ectopys (54,000+ before ablation; 10,000+ 3 months after)
Multi focal PVC's (which narrows substantially with exercise, widening again in recovery 180 ms to 80 ms)
Long runs of Polymorphic VT (VFib'd 3 times during EPS; near RV Apex & HIS)
PAC's (developed after ablation)
PSVT
Nonspecific T wave abnormalities
Bradycardia
Fainting w/no palpable pulse; Neurocardiogenic Syncope/Orthostatic Intolerance (NCS/OI)
Moderate OSA
BP - 130/70 - 150/90 during exercise stress test
Mild Tricuspid & Mitral valve insufficency
Concentric left ventricular hypertropy
EF 40% per cardiac cath
Non-Ischemic Cardiomyopathy
Dilated left atrium with normal left atrial pressures
Cardiomegaly of the heart
Vascular crowding
Incomplete RBBB (started 4/27/2007)
One EKG will be QT internal too short for rate, then I'll have prolonged QT's
Decreased LV Mass 105; LVEDV - 100 & LVESV - 30.5
Increased  LV Wall Thickness - 12
Decreased Cardiac Index  - 2022
LV (5.1cm) and RV (3.7cm) end diastolic midchambers
RV end diastolic midchamber lateral wall (4mm)
Moderately Increased Left Ventricle EDP - 34
Mild systemic hypertension

I really need to find out what is causing all this.

[Mom2four85]

Thank you for the response.   Sorry to sound so frustrated but I have gone through 4 cardiologists, 2 Ep's & 2 pcp's in less than a year trying to get answers.  

One cardiologist told me he had no answers and would do no further testing, my original EP basically fired me after I filed a lawsuit where he was called as a witness against my insurance company.  My last cardiologist told me I expected too much of him and medicine and I should just be happy I'm alive and would not look into my cardiomyopathy or treat it and worsening symptoms of LE edema; he told me the edema was due to gaining weight; even though at points during the day I have NO edema at all.

I did have a Cardiac MRI to test for ARVD,  it says there is no evidence pointing to ARVD, but also says LV is limited due to wall motion degredation and patient movement since I couldn't complete the test - inconclusive results and it says further testing needed.

I'm a 43 yr old female, and have suffered bouts of syncope since age 9 which no doctor took seriously until last year.  My EP at that time told me it was extremely rare for a patient's heart to stop during a syncopal event, which is what happened during my TTT.

Dr. Ramon Brugada looked at all of my info and said no for Brugada, ARVD I assume can be ruled out since the MRI says no evidence of it; as well as other things listed.

I don't know where to turn next or what to even ask for, so I will find a PCP and start there and hope they care enough to do something.

[CCFCardio MD2]

I'm sorry to hear you're having so much difficulty.  Your workup sounds very extensive already.  It sounds as if you need a physician you trust that can closely follow and coordinate your care.  This will help prevent unnecessary testing from multiple specialists.  One other test I could recommend is an endomyocardial biopsy if this has not been performed.  I don't know your age but infiltrative diseases can behave this way, such as sarcoidosis, amyloidosis, hemochromatosis.  Cardiac MRI can often see these conditions and it sounds as if you had one. Stay in close contact with your electrophysiologist as arrhythmias are their area of expertise.  You may also warrant work up for a pheochromocytoma, a hormone producing tumor that can cause spikes in blood pressure.

Best of luck

[Mom2four85]

also: I have had numerous EKG's & blood tests, Echo, Holter Monitor, exercise stress test, Tilt table test, sleep study,  EPS w/ablation, CTA, Xrays,  Cardiac Cath; MRI & PM/ICD implant; luckily the plumbing of my heart is good strong and showed no angiographic evidence for CAD.