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Hypertrophic Cardiomyopathy - Dr Lever

Tuesday, July 28, 2009 - Noon

Harry Lever, MD
Medical Director, Hypertrophic Cardiomyopathy Clinic, Robert and Suzanne Tomsich Department of Cardiovascular Medicine

Description

Hypertrophic cardiomyopathy (HCM) is a complex type of heart disease marked by thickening of the heart muscle, left ventricular stiffness, mitral valve changes and cellular changes. HCM affects an estimated 600,000 to 1.5 million Americans, or one in 500 people. HCM is the most common cause of sudden cardiac death in people under age 30 and may be best known for its role in cardiac arrest and subsequent death in some young professional athletes. Dr. Lever, a Cleveland Clinic cardiologist and renowned expert on HCM provides answers to your questions about HCM.

More Information

Cleveland_Clinic_Host: Welcome to our Online Health Chat with Harry Lever, MD a staff cardiologist who will answer your questions about hypertrophic cardiomyopathy (HCM). Dr. Lever is renowned expert on HCM. Welcome Dr. Lever and thank you for being here with us today.

Speaker_-_Dr__Harry_Lever: Thank you for having me.


Hypertrophic Cardiomyopathy

gdavisA: My son's heart was damaged by a virus about five weeks ago resulting in a 15% ejection fraction. Does he hypertrophic cardiomyopathy or some other form of cardiomyopathy?

Speaker_-_Dr__Harry_Lever: He has developed a dilated cardiomyopathy from viral myocarditis - that is not hypertrophic cardiomyopathy.

CLSTAR: I am late to the chat, so I don't know if this question has been asked; but what is the difference between hypertrophic and dilated cardiomyopathy?

Speaker_-_Dr__Harry_Lever: HCM is a thick walled heart with a small cavity and dilated cardiomyopathy is a thin walled heart with a large cavity.

LibrarianGirl: What is the likelihood of an adult who has been diagnosed as nonobstructed developing a significant obstruction later in life?

Speaker_-_Dr__Harry_Lever: We don't have statistics - but it is possible.

matt-st: What is the upcoming research or treatments for people with HCM?

Speaker_-_Dr__Harry_Lever: Treatments have not changed but we are carefully looking at papillary muscles, mitral valves, and scarring seen on MRI scan.


SAM (Systolic Anterior Motion of Mitral Valve)

jess5: I was recently told I have SAM of the mitral leaflet with moderate obstruction – what is SAM and what does this mean?

Speaker_-_Dr__Harry_Lever: SAM stands for systolic anterior motion of the mitral valve. This means that the mitral valve moves anteriorly when the heart contracts and it can cause obstruction to blood flow resulting in increased pressure in the left ventricle.

racecartfan_2: Hi, I have been tested At a COE and echo shows no SAM. I also participated in a study at a different COE that ran an MRI with contrast, The results state HCM with SAM. Which do I believe? I also wonder if SAM would be more evident if exercising while the echo is performed.

Speaker_-_Dr__Harry_Lever: Patients with HCM can have resting obstruction or they can have provocable obstruction and if we find no resting obstruction, we use provocative maneuvers such as stress testing - using a treadmill or upright bicycle.

racecartfan: Hi Dr. Lever. I have been receiving care for HCM at a COE for HCM. The diagnosis is that I am not obstructed. I participated in an MRI (with contrast) study at another COE which concluded that I have HCM with SAM. I brought the results to my appt. at my COE and they don't agree with the SAM diagnosis (even after looking at the same MRI Disk). Who do I believe? When I look at the MRI, it looks like the leaflet is hitting the septum but I realize that I am not qualified to read an MRI. I am stumped that I have conflicting diagnosis from two COE's. Can you comment?

Speaker_-_Dr__Harry_Lever: we have a service called eclevelandclinic - I could evaluate your information and provide you with a second opinion through this secure online service - or I would be happy to see you for an appointment.


Diagnostic Testing

jall49: Dr. Lever: In following the national health insurance debate, it looks all the plans contemplate some type of panel of super docs (like you) who will recommend what tests should be reimbursed and which one will not. Assuming that passes, what is your best guess as to how our annual HCM check-ups might be affected at places like Cleveland in terms of what tests will stay, which might be less frequent or which might be dropped, if any?

Speaker_-_Dr__Harry_Lever: The two most important tests for yearly check up are an echocardiogram and a holter monitor.

shirleymy: My question is in a metabolic stress test your oxygen is it supposed to fall during the test, and when I was done they took my BP and it was 170/50, is this ok?

Speaker_-_Dr__Harry_Lever: It depends on your baseline blood pressure. Oxygen is not supposed to fall.

howardgef: Dr Lever, at what age is a Holter Monitor recommended? Our 3-yr old daughter was diagnosed with HCM at 7 months of age. A recent ECHO showed that her heart is within normal limits all around, but she's never worn a Holter Monitor, so I still worry that we aren't seeing the full picture. Her EKGs have always been normal, but I understand those are just a snapshot in time.

Speaker_-_Dr__Harry_Lever: Why does your daughter's doctor think she has HCM if her echo is within normal limits?

buly: Would that be the same two most important tests for kids? Anything else that they must have each year?

Speaker_-_Dr__Harry_Lever: The holter monitor and echo are the two most important tests. If a relative was gene tested and positive for a specific gene and they were to have a gene test and don't have it - you don't have to continue with the screening.

elaine: Also my own EKG has show problems lately, is this the disease showing itself?

Speaker_-_Dr__Harry_Lever: You have many questions - it would be best for you to call.

dorothy015: What type of MRI needs to be done to determine amount scarring in the heart, what is the contrast called? If myectomy has been done and holter screening are ok, could there still be a need for an ICD based upon scarring?

Speaker_-_Dr__Harry_Lever: Gadolinium is the contrast. We would need to evaluate you for need for ICD.


Genetic Testing and HCM

lmthole: My 20 y/o son and 14y/o dtr have both tested positive for the gene for HCM. Both have rigorous and strenuous athletic schedules. After having an echocardiogram and EKG that resulted as "normal", their physician stated they could resume their normal lifestyles. Is this advice accurate?

Speaker_-_Dr__Harry_Lever: Yes - but they need to be carefully monitored with an echo at least every other year. They may never develop the disease.

captom: In addition to HCM, extended family members also have thyroid problems and 4 have had pituitary tumors. Is there a form of HCM associated with these issues?

Speaker_-_Dr__Harry_Lever: Not that I know of.

rlhall: What is the status of genetic tests for hcm?

Speaker_-_Dr__Harry_Lever: It is becoming less expensive and we are using it more.

chad23: Is HCM something you are born with – I have a friend that is 18 years old and she has HCM – do you get it or is it genetic?

Speaker_-_Dr__Harry_Lever: In someone of that age - it is usually genetic.

lesliberk: If the father has HCM should kids with functional murmurs be evaluated further? Pediatrician said not necessary, but HCM is new diagnosis, so he is not aware of that part. Thank you.

Speaker_-_Dr__Harry_Lever: Yes - they should be screened. This is where gene testing could be helpful. If they find the gene in the father but not in the kids, then there is no further need for screening.

elaine: I have positive results for the HCM gene. Presently I have only a small thickening of my heart muscle 1.3. My two brothers have Hcm and are my only siblings. One brother went into full cardiac arrest and was revived after a few minutes but suffers from brain damage. He has an ICD. The other brother, I have some symptoms of the disease, like shortness of breath and trouble with steps. My second question concerns my two daughters. They haven't been genetically test yet. One daughter is extremely physically active. She works out at least three hours a day. Will that cause her harm? The only two other relatives in my family are my brothers two kids who have tested positive to the dna gene. PLEASE RESPOND!

Speaker_-_Dr__Harry_Lever: Your children should be gene tested.

You should also have an MRI to look for scar and have your rhythm monitored with holter monitor and you should have a stress test. We would be happy to see you - or you can go to www.4hcm.org to find a HCM specialist close to home.

lesliberk: Is genetic testing covered usually under insurance? If not, how expensive is it? Sorry, I know you are not a billing person.

Speaker_-_Dr__Harry_Lever: Some insurance cover it and some do not. It depends on the laboratory you are using what the cost is. Some are willing to take only what insurance pays - you may need to ask your insurance company as well as labs.

elaine: I had a heart MRI that showed no scarring. The gene found was MYCBP3, which I was told causes late onset HCM. One of my brothers was first diagnosed at 56. I have been told the probability of getting the disease is about 90% Is this right? What tests should I have done and how often should I be checked? As to my two daughters should I have them genetically tested or should I have EKG's or echos?

Speaker_-_Dr__Harry_Lever: Have you had an echo - if not, you need one - and if positive a holter monitor. If you have HCM by MRI or echo - should be seen once a year.

Your daughters should be genetically tested as well.


HCM Symptoms

kterry: Are you saying that SOB, chest heaviness with related upper back pain and short periods of dizziness or lightheadedness even when resting should be treated with intervention other than just medications?

Speaker_-_Dr__Harry_Lever: You would need to be evaluated at that point for the best treatment for you.

captom: I have always been fatigued even as a child,and have thought that HCM contributes to this, is there anyway this can be managed---I am taking Verapamil but this not beta blockers have had an effect.

Speaker_-_Dr__Harry_Lever: You really need to be evaluated to provide you with an answer.

kterry: Is the upper back pain I experience common or is that due to something unrelated? It seems to come more when I'm on my feet at work and my chest gets heavy.

Speaker_-_Dr__Harry_Lever: If it occurs with exercise - then it can be related to HCM. You should see your doctor or we would be happy to see you at Cleveland Clinic.

jall49: I have run across a number of people with HCM and also thyroid issues. Could of course be all anecdotal and coincidence, but I was curious if you have ever noted this in the large population that you follow?

Speaker_-_Dr__Harry_Lever: I cannot say that I have noticed this.

mcolem: Would you do any interventions with a 51 year old on bystolic 5mg who has a ppm and has for a while shortness of breath at the start of activity, steps, lawn mowing, walking etc. Seems better once he's into it 10 min. or more. Feels that his heart needs to "catch up" I also noticed pursed lipped breathing that he says is a habit now. He has not tolerated higher doses of beta blocker in the past do to low BP. Also did arise quickly from a nap this weekend and fell to his knees, before almost passing out. Very new for him.

Speaker_-_Dr__Harry_Lever: It is time to be seen with these changes in symptoms. We would be happy to him.


Medications and HCM

JudyAB: Can PredForte eye drops used over a one month period affect an HCM heart ? If so is it enough to necessitate finding an alternative med?

Speaker_-_Dr__Harry_Lever: PredForte eye drops are fine.

kterry: I am currently on metoprolol xl 25mg and prn lasix for when I feel the pressure in my chest building up. Are there any other suggestions you have that I could present to my doctor medically that would possibly help before considering anything invasive? The heaviness in my chest also seems to cause upper back pain and I am wondering if this is a common thing with this or something unrelated?

Speaker_-_Dr__Harry_Lever: I would increase the dose assuming your heart rate is not too low and your blood pressure will tolerate it. If you continue to have symptoms you can add diltiazem or verapamil. If you still have symptoms a drug called disopyramide can be used - but it has to be started in the hospital.

buly: Are there long-term negative consequences to beta blockers? How about to early implantation of ICDS? (another pediatric concern!)

Speaker_-_Dr__Harry_Lever: No to beta blockers. Of course it depends on how young the kid - ICD leads need to be carefully placed to allow for growth of the child.

Jillmgk36: Are there any contraindications to taking Adderall XR for ADHD when one has high LV pressures?

Speaker_-_Dr__Harry_Lever: We don't like to use it. You need to see someone who understands HCM.


Myectomy

shirleym: This is for Dr. Lever: I have Hypertrophic Cardiomyopathy and I have had a myectomy in 2004, Was told I was restricted 6 months later both ventricles and now my echo is showing a completely normal heart , How could this happen? Could my heart be remodeling? I thought once you have HCM you have it for life. Thank you.

Speaker_-_Dr__Harry_Lever: It is possible that the Hypertrophy after successful myectomy could regress somewhat. It is not clear that the muscle could become absolutely normal but that is not a major concern as long as you are feeling well.

567LY: I had a myectomy 5 years ago. I now have moderately severe mitral regurgitation and my outflow tract obstruction has come back – significant. What do you suggest in my situation – for recurrent outflow tract and need for mitral valve surgery? What are my options?

Speaker_-_Dr__Harry_Lever: We need to see you to be thoroughly evaluated.

youngatheart: By way of reference I am almost 5 weeks post Septal Myectomy at Cleveland Clinic. I have HOCM with a gradient at rest of 120. I have several questions and you can answer all if possible. 1)Are the normal post surgical results a zero gradient or is it more normal to be left with a gradient/obstruction.? 2) Realistically how much thinning of the septal muscle and lowering of a post surgical gradient can one expect with "remodeling"? 3)Please explain what is meant by the left branch being "shot" by surgery. 4) What is your view on Genetic Testing for HCM patients? I have teenagers and they have been tested and cleared. My immediate family has also all been tested and are all clear. Thank you.

Speaker_-_Dr__Harry_Lever: Let's get you in touch with your doctor at the Cleveland Clinic to answer your questions. You can contact Dr. Lever directly. If your family members have been tested and cleared - they do not have to be further screened.

heart1996: Do I need to have a check up every year, or is every other year okay as long as I am feeling fine? My myectomy was in1996 and I received a pacemaker in 2005.

Speaker_-_Dr__Harry_Lever: The pacemaker has to be checked yearly and we like to see people every year for a follow up evaluation.

vive34: If you have HCM – will it always progress to needing surgery? Are there things you can do like diet and exercise to prevent that? Can the septum ever get smaller without surgery?

Speaker_-_Dr__Harry_Lever: If you have HCM it does not necessarily progress to surgery. We tell people to avoid weight training - but there are no specific diet or exercises to prevent it. We do know of any cases of the septum getting smaller without surgery.


Alcohol Ablation for HCM

kterry: I was diagnosed with HOCM a year ago. I have an appointment with my cardiologist this afternoon to discuss the results and any changes from last year in an echo and holter monitor testing I had 2 weeks ago. He is familiar with the diagnosis but doesn't see many patients with it in this rural area. I am a nurse as well and have done my own research on the disease. I have noticed more and more that my stamina is decreasing and am not happy with living this way. Is there any reason that alcohol ablation could not be the first invasive treatment to attempt prior to doing open heart procedures to correct the situation?

Speaker_-_Dr__Harry_Lever: We don't like to do alcohol ablation in young people because they leave scars in the heart muscle. If the alcohol is not successful then the results of surgery are not quite as good - and there is a high likelihood of needing a permanent pacemaker after surgery if it is preceded by alcohol ablation.

kterry: What is the success rate with ablation in shrinking the muscle enough to be normally active once again and what are the actual risks of the alcohol going down a coronary artery during the procedure? And with myectomy how soon should one see significant reduction in symptoms? Also, with either procedure, will life ever be "normal" again?

Speaker_-_Dr__Harry_Lever: An overall success rate for ablation is 75 - 80 percent. It is not as good as surgery. And the risk of alcohol is not very high if done by someone who knows how to do it.

With myectomy - one should see reduction of symptoms pretty much right away allowing for healing after surgery.

I would expect life to be normal again for most people.


HCM and ICD

eechiez_2: Is there evidence that repeated use of the chest muscles in ICD wearers increases the possibility of a fracture in the leads? If so, what is recommended for very active ICD wearers?

Speaker_-_Dr__Harry_Lever: Yes excessive use of chest muscles can lead to lead damage. You could ride a bike - you can swim, walk. No contact sports or weight lifting.

mcolem: Are you of the opinion that a 51 year old with a pacemaker inserted 5 years ago for bradycardia, should have an ICD instead?

Speaker_-_Dr__Harry_Lever: Not necessarily - it depends on the clinical situation. If you are having ventricular tachycardia - then an ICD may be necessary. Also in cases of poor ventricle.

markiev: I am 25 years old. My dad has HCM with a defibrillator put in. My doctor told me to keep an eye on symptoms and if they get worse – I should have an ICD put in too. I don’t want an ICD put in if I can help it – how do they know when you need one? If you have one, does it make you more tired?

Speaker_-_Dr__Harry_Lever: It does not make you more tired. We carefully monitor for rhythm disturbances - but you really need to be seen.


HCM and Exercise

jall49: Dr. Lever: For someone with a very small resting gradient, but a gradient that gets up between 100 and 200 with exertion, does the gradient cause any long term damage to the heart during exercise. Assume that the exercise is "HCM safe" (ie not basketball or the like) and is of moderate intensity for about an hour.

Speaker_-_Dr__Harry_Lever: We do not absolutely know the answer to your question but you have to be carefully monitored with yearly echo and Holter monitor and should you develop any symptoms with exercise such as shortness of breath, chest pain or dizziness- then an intervention would be required.

mcolem: Does regular, moderate aerobic exercise cause progression of HCM? This is for an active 17 year old with no outward symptoms, but a thickness of 30 and some fibrosis, and an ICD for precaution. Also, could exercise increase fibrosis?

Speaker_-_Dr__Harry_Lever: Moderate regular exercise does not cause progression of HCM that we know of - and we do not know if it increases fibrosis. However, we like to have patients on beta blocker medications.

buly: How about skiing with HCM? What are the dangers if it's not excessively cold and you're not pushing it?

Speaker_-_Dr__Harry_Lever: It depends on the altitude as well as "pushing it" - if you wanted to ski I would do lower elevations - and if you get short of breath or symptoms - stop.

buly: I didn't know there were altitude considerations for HCM hearts--what are the altitude concerns and at what altitude?

Speaker_-_Dr__Harry_Lever: At higher altitude it decreases the amount of oxygen you inhale and increases stress on the heart.

cindyL: Is HCM the same condition that causes sudden death in young athletes – they do not provide any special screening at my son’s school. How would he know he has that before he begins football this fall?

Speaker_-_Dr__Harry_Lever: Yes - this is what causes young athletes to fall from sudden cardiac death. He needs to have a thorough history and physical exam, including a family history. If there is concern, he needs to have an electrocardiogram (EKG). If that is abnormal, other studies can be done.


HCM and Pediatrics

buly_2: Hi Dr. Lever, We have a 7 year old with an impressive septum -- 4.0 cm and no symptoms, we're wondering what the latest is on kids with HCM and one risk factor like this is----do we try to wait until she's 10 to place an ICD (some folks recommend that)? Do we do it now and risk the other complications from that? She is gene positive, found out dad has the gene and grandma (she's now in her 80s). We also wonder, if this was your grandkid what pediatric HCM specialist would you take her to? The pediatric HCM world is a very scary place to be.

Speaker_-_Dr__Harry_Lever: It is best for your daughter to be evaluated. At the Cleveland Clinic - you could see Kenneth Zahka. We do eclevelandclinic - but he is not a doctor on that service - but has a long history of treating HCM pediatric patients. For other hospitals - I would suggest you contact 4hcm.org.

howardgef: Regarding my 3-year old daughter's HCM, I should have clarified that her most recent ECHO showed her heart to be within normal limits. It had not been in the past. From everything I've read and heard, though, I'd call it "resolved", although I understand that she will need to continue to be monitored annually. Just wondering if a holter monitor would reveal anything the ECHO hadn't. Thanks!

Speaker_-_Dr__Harry_Lever: I would suggest that you have a second opinion with Dr. Zahka. Holter is looking at heart rhythm. An echo looks at heart structure and function.


Papillary Muscle Displacement

Jillmgk36: Is papillary muscle "displacement" in and of itself considered a form of HCM? if so, is it felt to be genetic?

Speaker_-_Dr__Harry_Lever: In some cases it may be - but we do not have enough data to be certain at this time. It may be genetic.

Jillmgk36: My son has papillary muscle displacement but no septal thickening or other signs of HCM. he shows high pressures during exertion on the stress echo there at CCF. he has been advised to stop some of his athletic activities, but will medications such as beta blockers also be needed? he feels fine and in typical teen fashion, not too eager to accept limitations since he has had no symptoms.

Speaker_-_Dr__Harry_Lever: He still needs to be on beta blockers.


Other topics

Atrial Fibrillation:

stiffheart: Can someone with HCM have a successful pulmonary vein ablation to control a-fib?

Speaker_-_Dr__Harry_Lever: Yes - they can have a pulmonary vein ablation to treat afib.

EECP:

LindaS: Has EECP been used to relieve ongoing angina after medications have failed?

Speaker_-_Dr__Harry_Lever: No - not for HCM

Find MD:

JudyAB: Dr Lever- I was seen by you in may 2007, post alcohol ablation in another state, and have had a somewhat roller coaster ride since then, but have been pretty stable for the past year after following your main suggestion to lose weight (50 lb so far) My most recent cardiologist is wonderful and has helped me find a good balance of meds(Cardizem 240 BID and bisoprolol 2.5mg daily) I do not currently experience any noticeable arrhythmias since he placed me on potassium to keep my levels in the middle of the normal range. In fact I am a nurse working part-time in home care and feeling better than I have in 10 years. Good enough to be in denial that I have very many problem at all! as long as I do not overexert myself. now the rub - this wonderful local cardiologist is retiring next month.(Columbus, Ohio) Do you have any protégés that have relocated to the Columbus area? If not any other cardiologist to suggest? Thanks for all you do for this HCM community!!!

Speaker_-_Dr__Harry_Lever: Please call me at work.

Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Lever is now over. Thank you again Dr. Lever for taking the time to answer our questions about hypertrophic cardiomyopathy today. Please visit http://www.4hcm.org/ for more information on HCM. The Hypertrophic Cardiomyopathy Association website is a great resource for HCM patients and family members is.

Speaker_-_Dr__Harry_Lever: Thank you for having me today.

Technology for web chats paid in part by an educational grant from AT&T Ohio and the AT&T Foundation (formerly SBC).

Reviewed: 07/09

This information is provided by Cleveland Clinic as a convenience service only and is not intended to replace the medical advice of your doctor or health care provider. Please consult your health care provider for advice about a specific medical condition. Please remember that this information, in the absence of a visit with a health care professional, must be considered as an educational service only and is not designed to replace a physician's independent judgment about the appropriateness or risks of a procedure for a given patient. The views and opinions expressed by an individual in this forum are not necessarily the views of the Cleveland Clinic institution or other Cleveland Clinic physicians.

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