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Heart Disease (Expert Forum)
Familial Ventricular Tachycardia
This forum is for questions and support regarding heart issues such as: Angina, Angioplasty, Arrhythmia, Bypass Surgery, Cardiomyopathy, Coronary Artery Disease, Defibrillator, Heart Attack, Heart Disease, High Blood Pressure, Mitral Valve, Pacemaker, PAD, Stenosis, Stress Tests
Familial Ventricular Tachycardia
by Marcia K., Nov 10, 1999 12:00AM
I am having a problem & I am looking anywhere I can to find advice & direction. As you will see from my letter I am looking primarily for two things. One, the leading Doctor in one of the 2 fields related to my condition. And second, advice from someone as to how I can do intensive research on the Internet in fields which seem unclear & still in it’s infancy. I am under the care of competent physicians but I would like (with their blessings & recommendations) to take it to another level. If you have any advice on either I would really appreciate it.
Here is a short summary of my situation. I am a 29-year-old female. A day after giving birth to my 7th child I was found to have V-Tach with periods of torsade. An echo was taken at that time and was the results were in the normal range. After a severe episode of torsade another echo was performed. The echo showed a severely dilated left ventricle with generalized severe hypokinesis and an EF in the 30% range. Subsequent EP studies came back negative. The doctors whom I first dealt were the group that implanted the ICD. At first they thought the probable cause to have been Peri-Partum Cardiomyapathy. This belief was caused by the extremely weakened condition of my heart at the time. This group though does not have sufficient experience in Cardiomyapathy and therefore referred me to a doctor in another hospital who is experienced in this field. This doctor is convinced that it was not Peri-Partum Cardiomyapathy based on the fact that after performing another echo the heart had returned to normal. After a Peri-Partum Cardiomyapathy such a quick recovery is not to be expected. After hearing this opinion my doctors feel that we should pursue the possibility (probability?) of genetics. A strong indication of a genetic cause is the fact that I have a 30-year-old brother who has had trouble as well. Four years back he began having feinting spells. After extensive & exhaustive testing they found him to have Ventricular Tachycardia, also with a negative EP study. As a result an ICD was implanted. He did some genetic blood work (which seems to still be experimental). The genetic testing shed no light. The fact that I too had these incidences of V-Tach only increased the possibility that there may be a genetic predisposition in our family to V-Tach. These doctors therefore believe that our entire family should consider being treated as a precaution.
Do you have any suggestions as to how to find doctors specializing in the field of genetics that seems to be in an infantile state? I would also like to pursue the possibility Peri-Partum Cardiomyapathy. How would I go about doing my own research, on the Internet or otherwise?
Any help or suggestions that you make will be greatly appreciated.
Thank you,
Marcia
Here is a short summary of my situation. I am a 29-year-old female. A day after giving birth to my 7th child I was found to have V-Tach with periods of torsade. An echo was taken at that time and was the results were in the normal range. After a severe episode of torsade another echo was performed. The echo showed a severely dilated left ventricle with generalized severe hypokinesis and an EF in the 30% range. Subsequent EP studies came back negative. The doctors whom I first dealt were the group that implanted the ICD. At first they thought the probable cause to have been Peri-Partum Cardiomyapathy. This belief was caused by the extremely weakened condition of my heart at the time. This group though does not have sufficient experience in Cardiomyapathy and therefore referred me to a doctor in another hospital who is experienced in this field. This doctor is convinced that it was not Peri-Partum Cardiomyapathy based on the fact that after performing another echo the heart had returned to normal. After a Peri-Partum Cardiomyapathy such a quick recovery is not to be expected. After hearing this opinion my doctors feel that we should pursue the possibility (probability?) of genetics. A strong indication of a genetic cause is the fact that I have a 30-year-old brother who has had trouble as well. Four years back he began having feinting spells. After extensive & exhaustive testing they found him to have Ventricular Tachycardia, also with a negative EP study. As a result an ICD was implanted. He did some genetic blood work (which seems to still be experimental). The genetic testing shed no light. The fact that I too had these incidences of V-Tach only increased the possibility that there may be a genetic predisposition in our family to V-Tach. These doctors therefore believe that our entire family should consider being treated as a precaution.
Do you have any suggestions as to how to find doctors specializing in the field of genetics that seems to be in an infantile state? I would also like to pursue the possibility Peri-Partum Cardiomyapathy. How would I go about doing my own research, on the Internet or otherwise?
Any help or suggestions that you make will be greatly appreciated.
Thank you,
Marcia
Doctor's Answer
by CCF CARDIO MD - CRC, Nov 12, 1999 12:00AM
University of Texas, Southwestern in Dallas has a very strong genetic cardiology program and you may look into them concerning this condition. Here is some info on peripartium cardiomyopathy and some other resources your library can help you obtain.
Post-Partum (or peripartum) cardiomyopathy is a relatively rare form of heart failure that affects women during or following pregnancy. Establishing a diagnosis requires 1. The absence of a determinable cause for cardiac failure, 2. Absence of preexisting heart muscle disease, and 3. Time limitations of onset of illness from the last month of pregnancy to the first 5 post-partum months. Peripartum cardiomyopathy complicates 1 of 1300 to 4000 deliveries in the United States. This condition may affect women of any race, age, or number of prior deliveries; however, older, multigravida, African American and twin pregnancies are thought to represent predisposing features. The cause is unknown.
The treatment is standard heart failure medication (diuretics, digoxin, ACE inhibitors) and in severe cases heart transplant. Approximately half of patients with this diagnosis will return to normal within 6 months. Of those who do not return to normal the prognosis is poor with an average survival of 4.7 years after diagnosis (without transplant). Repeat pregnancies are not recommended for women who have had peripartum cardiomyopathy. You can find additional information in the following articles. (your local medical library should be able to help you find these).
Lampert, MB Lang RM. Peripartum cardiomyopathy. Am Heart J 1995; 130:860-870.
Huerta EM, Erice A, Espino RF, et al. Postpartum cardiomyopathy and acute myocarditis. Am Heart J 1985; 110:1079-1081.
Post-Partum (or peripartum) cardiomyopathy is a relatively rare form of heart failure that affects women during or following pregnancy. Establishing a diagnosis requires 1. The absence of a determinable cause for cardiac failure, 2. Absence of preexisting heart muscle disease, and 3. Time limitations of onset of illness from the last month of pregnancy to the first 5 post-partum months. Peripartum cardiomyopathy complicates 1 of 1300 to 4000 deliveries in the United States. This condition may affect women of any race, age, or number of prior deliveries; however, older, multigravida, African American and twin pregnancies are thought to represent predisposing features. The cause is unknown.
The treatment is standard heart failure medication (diuretics, digoxin, ACE inhibitors) and in severe cases heart transplant. Approximately half of patients with this diagnosis will return to normal within 6 months. Of those who do not return to normal the prognosis is poor with an average survival of 4.7 years after diagnosis (without transplant). Repeat pregnancies are not recommended for women who have had peripartum cardiomyopathy. You can find additional information in the following articles. (your local medical library should be able to help you find these).
Lampert, MB Lang RM. Peripartum cardiomyopathy. Am Heart J 1995; 130:860-870.
Huerta EM, Erice A, Espino RF, et al. Postpartum cardiomyopathy and acute myocarditis. Am Heart J 1985; 110:1079-1081.
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A good first step is a new WEB site funded by the National Institute of Health(NIH) which grew out of the Human Genome project(i.e. Mapping the entire Human Genetic Blueprint or Genome.) The URL is as follows: http://www.geneclinics.org
Some other pointers are: Ask your doctors what type of genetic disease they suspect(i.e. Autoimmune, Muscular, Connective Tissue, Organ/Gland/Nerve); Are other body systems affected besides the heart; Are there any studies going on that are looking for families to participate because they suspect a genetic component to the disease; Are any genetic tests such as PCR(Polymerase Chain Reaction) or ELISA available; Do they suspect a simple(One or more gene defects/mutations and always resulting in expression when present.) or more complex(involving many Genes/Chromosones and impacted by other diseases, exposure to toxins/radiation, etc.for expression.)genetic disease; Do they think it is Cardiomyopathy(If they do this URL has some info-http://www.aarda.org/). I hope this is helpful.
Sincerely,
Ginny
Please forgive me for posting so many times. I am really concerned and wonder if I will be ok. I posted a question on the 9th of November (however its under the 8th). I am really nervous and worrying myself sick. My name is Jaden Pace. Thank you so much for your time