| Author | Message | ||
     Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Gina Garan wrote Hi Dr. Kantars, I notice you wrote "We use ICD implantation in our center only for patients with previous cardiac arrest or syncopes during betablocker treatment" In my experience, this is too restrictive and is probably based on financial reasons, not medical reasons, and it is changing. Since by far most people do not survive a sudden cardiac death event, and for many people with CPVT the first (and only) "symptom" of their condition is SCD, more centers and insurance companies will implant ICDs and cover them for persons with CPVT diagnosis and first degree relatives with SCD, which seems totally appropriate and life saving to me! You simply cannot tell people they must survive an SCD when perhaps 5 to 10 percent to slightly better in some places of the these patients will survive a sudden cardiac death, which for many of them is their first (and fatal) indication of their arrythmia. So they are not on beta blockers, they are not fainting ever, but their first event might be their last. This is why people are forced to doctor shop, to find someone who is interested in saving their life, and fortunately, there are many, many, many providers who will help them. Still it means that persons less able to navigate the health care system are receiving less care. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
I am not happy to your implications of financial motives affecting my and others doctors choice of treatment, and I have to answer a little bit more harsh that I normally do. I live in Denmark which have a health system financed by our goverment. No one rich or poor have to pay a dime for an ICD (except tax). That means that every ICD I want to prescribe is implanted. Financial considerations does not matter. My wage is also constant and does not depend of how many ICD's I prescribe. Some facts have to established. ICD's could also be dangerous, and actually kill people althoug seldom. To justify an ICD implantation, one have to ensure the benefit outweights the risk. According to the international guidelines of sudden cardiac death determined by the most famous experts in both US and Europe the only indication in LQTS for which there is evidence and/or general agreement that an ICD is useful and effective, is secondary prevention after previous cardiac arrest. Our use of ICD treatment when betablockers fail is according to the same guidelines: conflicting evidence and/or a divergence of opinion about the usefulness/efficacy of ICD treatment. Following our indications we have a fairly aggressive policy with many implants. Remember that 1/3 to 1/2 of the LQTS patients will never experience any symptoms at all in their whole lifetime and will be treated unnessecary. The risk of a cardiac arrest for an untreated Long QT patient is less than 1% per year, and betablockers could be very effective depending of the genotype. There is some special indications of ICD which could be warranted for example LQTS with deaf muteness (Jerwell Lange Nielsen) and symptoms. Maybe the rare SCN5A (LQT3) genotype where betablockers not seems to be so effective. Off cause there is discussions even between experts but there are based on scientific facts. You are welcome to have you own opinion of which patients who will benefit of ICD. But then you have to document your opinion with hard scientific data. | ||
| Michele Charlesworth |
I have long qt and have had it for six years. Following a cardiac arrest I found this out. I was only 27 years old at that time. I then got my ICD and was told that the chaces of it happening again where very slim. I was put on a beta blocker. Within 3 months I had another cardiac arrest while driving, the first one I was driving also. The first time my husband was with me and gave me cpr until the paramedics could get there. The second time I was alone and I woke to a man banging on the window of my car screaming at me because as he stated "you just nodded out, what's wrong with you" Luckily there was no accident but I went back in the hospital and an anti arrythmic was added. Well months later I had 3 or 4 in one day. At that time I was upgraded to a dual chamber pacing ICD. This seemed to help it settled down for a while but it came back. I had some more shocks we tried more meds nothing was working. I got my new ICD in Sept 2003 nd I was ok for a while but aI had several self terminating and now I just had another shock about 3 weeks ago. And they found I also am having AFIB. Help! But now I find that my daughter also has it. She is 12 years old. She's on Nadalol and is completely restricted from any sports. She has holters and stress tests and her pediatric ep wants to hold off implanting the ICD until she's been through puberty. My ep feels she definately needs it based on what happened to me. Do you have any advice? Thanks | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
It is a very difficult question and Since I dont have all information I cant answer your specifically. Even if I had it still is impossible to give the perfevt answer. Generally we dont implant ICD's in Denmark unless either the patient had a cardiac arrest or faintings despite betablocker therapy. Family members with a cardiac arrest is always terrible, but several studies show that it does not affect prognosis. Its the patients own history which matters. Genetic screening could add important information. This help you not much. The problem is that we first know the answer 70 years later. If your daughter had lived a normal life without any symptoms betablockers was adequate. IF implantation of an ICD leads to severe complications (remember that even ICDs can kill), an ICD was not the right choice. However if your daughter experience a Sudden Cardiac Death due to LQTS an ICD was a perfect choice. Without knowing the future, you cant give the perfect answer. Whatever you choose can be wrong or right. You have to evaluate if your daughter have syncopes, how long her QTc is, what mutation she has, and even then your EP is on your own. You have to trust him, or get a second opinion in one of the specialized centres of Long QT in your country. By the way, regarding your own case have you discussed the possibility with your EP, to have a small operation cutting the nerves on the left side to the heart. (Left stellectomy) We use it now very seldom in DEnmark, but the only indication here is patients with repeatedly appropiate shocks despite betablocker therapy. It seems that you fulfill these criteria | ||
| Michele |
I had my blood drawn almost 2 years ago for the gene and still have not heard. I have not asked my ep about the stellectomy but I will. Thank you I am from the USA. | ||
| Alexa |
As someone who is bi-cultural and has lived and worked both in Europe where there is a comprehensive health care coverage, and in USA which lacks this but has an extensive system of medical litigation, I found the exchange between Dr. Kanters and Ms. Garan very important. I am a medical ethicist and the debate about the role of money in medical decision making is illuminating for patients. The patients who visit this excellent discussion board for education should be educated also about the money factor and their discussion does just that. While it is not directly related to LQT, the money factor should be discussed as well. Dr. Kanters and Ms. Garan come to the issue from two very different systems, with two different perspectives and each has a very honest stance. In Europe, due to comprehensive coverage, money plays little role in making medical decisions for individual patients although it does play a big role at the level of government when decisions about scarce resources are made into policies and decide who gets what treatment, and consequently, who lives and who dies. So health care in Europe is not immune to the pressure of money, it just happens at a higher level. In USA, due to the impact of managed care, doctors play the role of gatekeepers to scarce and expensive resources although they are reluctant and worried about this. The fact is, doctors have direct incentives to perform expensive procedures to insured patients. There are many instances when unnecessary tests are performed on insured patients liberally. Under such a system, doctors tend to err on the side of overtreating and billing for more services. Another factor that puts pressure on a doctor's judgment in USA is the practice of litigation and the numerous malpractice law suites against physicians that are about to paralyze health care delivery. This is another reason why doctors in USA tend to overtreat than to undertreat. In the words of a friend electrophysiologist from USA, cases of sudden death of a child or a young person are a big tragedy for the family. In the same time, the public easily empathizes with the victim's family and the case becomes sensational for the media. Such cases affect the judgment of jurors in the court in favor of the victim/family and such cases are more successful in the courts who tend to award damages to the families suing a doctor. I am sorry to be bringing up all these ulterior motives associated with the issue but we as patients, especially in USA, should be very clear that when we see our doctor, how he treats us could be affected also by external factors such as cost of the procedure, insurance coverage, and risks of litigation for the doctor. And, as Ms. Garan's note shows, money is on the doctor's mind not because doctors are greedy here but because they are forced to ration treatments and resources even if they do not want to. | ||
| Lisa Leithauser |
I read this ICD exchange with great interest. I have 4 children, 3 of whom have been diagnosed with LQT. My oldest, now 13, had v-fib at 2 yrs old, and later genetic testing revealed the HERG marker. He has not had an episode since, but did suffer brain damage. All 3 children are on atenolol, as am I now. The ped. cardiologist is against the ICD, as am I. My cardiologist has recommended one for me (4 syncopes from age 28 to 40). Each time I came to on my own. My mother suffered 4 syncopes in her 30s. She is not on any meds, and just turned 61. Her parents died in their 50s, but from cancer. With the only evidence of sudden death in our family, the near sudden death of our son, I think recommending an ICD for me is ludicrous, and places more stress on my family and me forcing me to wake up every day and decide if I am doing the right thing. This is also the same cardiologist that put me on a high dose of beta blocker when 2 years ago I told him I couldn't tolerate it. I cut the dose in half, and feel half better, but have had my first normal stress test ever. | ||
| Øyvind Warhuus |
Hi, I have got syncopes from I was 4 year until I was 19. I used a Betablocker named Tenormin (in Norway). It was no good. But then I started using Visken. This drug works very well, preventing syncopes, and have no side effects. But no I cant find it in Norway anymore. They have stopped selling it. Does anyone know where to buy it? Is it sold in Denmark? Or in a webstore perhaps? Thankful for your help. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Visken is still available in Denmark. In theory it is not a betablocker well suited for LQTS since it actually has a small betastimulating effect too (what doctors call a partial agonist). However since you have good experience you can try to get it from Denmark. It is sold by Novartis. | ||
| Rika |
?indication for ICD. I've LQT1 and on Inderal 30mg/day - I feel terrible on higher dosage. Normal pulse rate 40-60/min Bp 90-110/50-70mmhg. I've adapted my life the past 40yrs to LQT and manage my high stress work well. No syncope the past 10yrs. My son had cardiac arrest in Jan 05 while on Inderal. He got his ICD since. I was adviced to consider a ICD for myself. Is the low Inderal dosage a indication for a ICD? I allways thought I could handle and manage high adrenaline situations. Since my son's arrest I am scared that one day I can't handle it. | ||
| Dr. Jorgen Kanters Username: Jorgen Registered: 08-2003 |
Generally we implant ICD either in patients with prior cardiac arrest (as your son) or in patients who continues to faint despite betablocker treatment. Family history seems not to be important in LQTS risk stratification. The decision of implanting an ICD or not is not easy and should be taken with acces to all available clinical information, wherefore I can not say whether it is justified in your case or not |