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Hypertrophic Cardiomyopathy (HCM) (Drs. Lever and Smedira 1/07/11)

Friday, January 7, 2011 - Noon

Nicholas Smedira, MD
Surgical Director, Kaufman Center for Heart Failure, Department of Thoracic and Cardiovascular Surgery, Cleveland Clinic Miller Family Heart & Vascular Institute

Harry Lever, MD
Medical Director, Hypertrophic Cardiomyopathy Clinic, Department of Cardiovascular Medicine, Cleveland Clinic Miller Family Heart & Vascular Institute

Description

Hypertrophic cardiomyopathy (HCM) is a complex type of heart disease that affects an estimated 600,000 to 1.5 million Americans, or one in 500 people. It is the most common cause of sudden cardiac death in people under age 30. Take this opportunity to have your questions about HCM answered by Dr. Harry Lever and Dr. Nicholas Smedira from the Miller Family Heart & Vascular Institute at the Cleveland Clinic.

More Information

Cleveland_Clinic_Host: Welcome to our "Hypertrophic Cardiomyopathy" online health chat with Harry Lever, MD, and Nicholas Smedira, MD. They will be answering a variety of questions on the topic. We are very excited to have them here today! Thank you for joining us Dr. Lever and Dr. Smedira, let's begin with the questions.

Dr__Harry_Lever: Thank you for having me today.

Dr__Nicholas_Smedira: Thank you as well.


Diagnosis and Symptoms of HCM

lmaier: My father had Hypertrophic Cardiomyopathy he died at age 61. His father died suddenly at age 51 of "heart attack" I am an only child should I be checked for this problem. a few years ago I had hard pain in my heart and had a stress test and it was determined that it probably was pericarditis. I was diagnosed with MS in 1983 and have muscle weakness and fatigue easily, so how do you know when something else is going on?

Dr__Harry_Lever: You should be evaluated—that would include an echocardiogram which can determine if you have hypertrophic cardiomyopathy.

rbh: why are HCM patients more likely to have TIAs?

Dr__Harry_Lever: They are not prone to TIAs. They are prone to have dizzy spells and passing out.

Fredd: What is the correlation between those with HCM and those with Benign PPVertigo? It seems common in those with HCM.

Dr__Harry_Lever: We don't know. We see patients with HCM with vertigo but it is not clear if there is a definite relationship.

AnjelicaJ: What kind of results from a stress echo set off alarms that a surgical intervention may be required? Are double digit pressure gradients, along with shortness of breath, an indication that a septal myectomy might be beneficial?

Dr__Harry_Lever: We look for drop in blood pressure, poor exercise tolerance, and severe shortness of breath.

Moosedreams: If a drop in blood pressure is an indicator of possible surgery, what does a drop in blood pressure after a myectomy suggest?

Dr__Harry_Lever: Some patients inappropriately vasodilate their peripheral blood vessels and there are different treatments for that.


Surgical Treatment of HCM: Septal Myectomy

AnjelicaJ: What are the determining factors in assessing whether a patient is a good candidate for a septal myectomy?

Dr__Harry_Lever: Patients need to have severe outflow tract obstruction and have significant symptoms.

Dr__Nicholas_Smedira: Surgical risks are related to overall health—the absence of other medical problems means a patient would be at very low surgical risk after a myectomy.

We examine the echocardiogram, the cardiac catheterization; we may look at kidney and lung function to help consider all options for the treatment of outflow tract obstruction.

AnjelicaJ: Is a septal myectomy recommended as a preventative measure, when the symptoms are still treatable with medication, as opposed to waiting for a potential deterioration of the condition, hence possibly subjecting the heart to further damage?

Dr__Harry_Lever: I usually tell patients that if they cannot do activities they want to do—then it is time to operate. If you are functioning well and able to do what you want with medical management, then it is not time to operate.

ARMY2310: If you have the septum trimmed will it grow back and you could have to have another operation? Also at the time of the operation would you check to see if there is any blockage and a person would need a bypass?

Dr__Nicholas_Smedira: We will check to see if there is a blockage with cardiac catheterization before surgery and if present we do a bypass at the time of myectomy.

The muscle does not grow back—the key to a successful operation is to take a large enough quantity of muscle to have a widely open path for the blood to leave the heart.

marvel58: CCF did a septal reduction on me in mid October. I've been experiencing a lot of 'popping' and 'clicking' in my sternum area as well as my upper back. Is this normal or should I return to CCF and have it evaluated? I feel great otherwise!

Dr__Nicholas_Smedira: It is not normal. It may be related to a break in a sternal wire or the cartilage that is next to the sternum. Please come back and let us take a look. Please call the surgeon's office that operated on you.

MaryC: I have been diagnosed with IHSS. I have a membrane around my aorta, a thickened ventricle and now have aortic insufficiency. My "OUTFLOW TRACT IS OBSTRUCTED". I will be 68 this May 24TH. In Feb. 2010 I became SOB, had palpitations, my BP was 185/106. My pulse was rapid. I had felt nauseated, had light-headedness and chest pressure. I saw my cardiologist and had a cardiac cath. Since then, I have had another echo, a cardiac MRI and on 12/28/2010 a TEE. It sounds like I have 3 things to be fixed: the membrane has to be removed; a myectomy to reduce the "HUGE HEART," and repair of the aortic valve. I am scheduled to see a cardiac surgeon on 1/11/11 to decide what should be done. During the last several months I have been feeling really tired and get S.O.B. easily, but I haven’t been exercising due to arthritis in my hip. I also babysit every day for two (7 & 4) grandkids. When stressed, I have chest tightness. I feel palpitations a lot. I am only going to do the open heart surgery once so can it all be fixed at once? Could I come out to your Clinic for the surgery? Thank you very much.

Dr__Nicholas_Smedira: It can all be fixed at once. We would be happy to see you—if you are going to have the surgery, choose a center with large experience in treating IHSS (HCM) and subaortic membranes. You may contact us for a surgical review.

HCM-PA: Dr. Smedira: One year ago to the day, you performed a myectomy on me at CCF. The good news is I'm doing really well. I'm at the gym 3-5 times a week, taking some personal training, and generally not limited in daily life by symptoms. My question is this: I'm 37 years old. Can I expect to continue do this well over the long term (say, 15, 20, 30 years)? Thanks again for terrific care.

Dr__Nicholas_Smedira: The answer is yes. I am glad you are doing well.

alliehbc: After a successful septal myomectomy and continued beta blocker therapy on an otherwise healthy 47 year old male (fairly good diet but no exercise, no smoking, no drinking) what would a reasonable long term prognosis be for him? what should he expect now for rest of life?

Dr__Harry_Lever: There is one study in the literature that states that those that have a successful myectomy you have the same life expectancy as the normal population.

Dr__Nicholas_Smedira: In our study of 323 patients undergoing myectomy their long-term survival was indistinguishable from an age matched population of US citizens.

AmyB: The drug Amiodarone is one my dad took over 10 years ago. He had horrible side affects - bad skin irritation / blisters. Has anything changed about that medication that may make the side affects more tolerable for my dad?

Dr__Harry_Lever: If your father had a bad reaction before, he most likely will have a bad reaction again. However there are other drug choices such as Multaq or even Tikosyn.

bartab: I had my surgery on 12/15 and was back home on 12/20 and didn't feel I had enough air to walk any distance until 01/04, is that normal? I am now walking about 2 miles a day. THX, Bart

Dr__Nicholas_Smedira: Yes, that is normal. After surgery, the lung airspaces tend to collapse and it may take a few weeks for them to fully expand.

bobhcm: Please comment on the possibility of recurrence of HCM after successful surgical myectomy.

Dr__Harry_Lever: We do not get rid of the disease but do get rid of the obstruction.

Dr__Nicholas_Smedira: In our experience the need for repeat surgery is about 1 percent. Most commonly is related to deterioration in the function of the mitral valve. Rarely do patients have recurrent obstruction.

romanzf: after a myectomy at Stanford last May, I'm still suffering from some memory lapses, sleeplessness and depression. any suggestions?

Dr__Nicholas_Smedira: This is persisting longer than what one would expect for postoperative changes and it would be worthwhile to visit a neurologist to see if there are potentially things that can be modified.

bartab: Very pleased with the corrective surgery for my HCM, thanks to Dr. Lever and Dr. Smedira I am back to normal and feel Great!

Dr__Nicholas_Smedira: That is awesome!


HCM and Valve Disease

Moosedreams: Can a Mitral Valve be repaired or replaced using minimally invasive surgery in an HCM patient who has had a Septal Myectomy or must their chest be reopened?

Dr__Nicholas_Smedira: It is possible to repair it through a small incision but most commonly it would require the chest to be reopened.

Moosedreams: Are there any additional risks or complications of reopening your chest for a second surgery such as the Mitral valve repair I inquired about on an earlier question?

Dr__Nicholas_Smedira: Over the past 10 years at Cleveland Clinic we have reduced the risk of complications and death during reoperations to the level of a first operation.

marvel58: You guys did a mitral valve repair during my septal reduction. Do these repairs last or can I expect the mitral valve to deteriorate over time?

Dr__Nicholas_Smedira: Our follow up is limited, but to date, it is our impression that these repairs are as durable as any other type of mitral valve repair.


HCM and Medications

Moosedreams: I am an HCM patient who has had a Myectomy recently. Many HCM patients are both beta blocker and a calcium channel blocker but I am only on a beta blocker. When do the calcium channel blockers along with a beta blocker come into play with an HCM patient?

Dr__Harry_Lever: Most patients after surgery we use just beta blockers. If they do not feel well with a beta blocker we will add a calcium channel blocker—but this is very uncommon after surgery.

millerfive: Is there any natural supplements or vitamins, especially COQ10 that can be beneficial for males that have hypertrophic cardiomyopathy?

Dr__Harry_Lever: No. There are no natural supplements for this purpose

Fredd: Is COQ10 harmful for those with HCM? Or do you recommend it NOT be taken?

Dr__Harry_Lever: I recommend it NOT be taken.


HCM in Children, Genetics

coffee: My 10 year old son has HCM. He already has an ICD. He is going in for another Cardiac Cath this coming Tuesday. There seems to be blockage this time. How many caths can someone have? What is the next step? He has already been on many medications and his coughing and chest pain are getting worse. He also has retained so much fluid this year. His weight has gone up...and he was on a water pill. Just a little worried at the moment. Also his last echo showed a huge growing difference. His heart is now so very very thick. He has had 4 caths already in his life. Not sure what is next for him.

Dr__Harry_Lever: If what you mean by blockage is obstruction to blood flow out of the heart then consideration for surgery should be given.

Dr__Nicholas_Smedira: You may want to consider an evaluation at an experienced hypertrophic cardiomyopathy center.

rschultz: Do you recommend genetic testing for offspring of patients with HCM?

Dr__Harry_Lever: If the parent has HCM and wants to have a gene test—and that test is positive—we do genetic testing for children. If we find that the children are not gene positive, if they do not carry the gene—then we do not have to follow them.

If the parent has HCM but is not gene positive, then we continue to follow the children with echos.

lsharron: Last question is related to my daughter who was tested positive for the HCM associated gene. she is 6 years old and has said on several occasions that her heart is beating really fast. it’s not during a period of exercise. Who at Cleveland could evaluate her? I did have her evaluated at Stanford a few years ago and the echo showed no issues.

Dr__Harry_Lever: Dr. Zakha is a pediatric cardiologist specializing in HCM.

rnbauer2000: At what age can this condition be detected in children?

Dr__Harry_Lever: At any age it can be detected although it is more commonly seen through puberty.

RWBLUMBERG: How does myectomy typically affect heart beat irregularities? Will it lessen increase — or remain unchanged?

Dr__Harry_Lever: It could lessen it. There is a study that shows there were less defibrillator shocks after myectomy.

AnjelicaJ: In your expert opinions, can HCM develop without it being hereditary?

Dr__Harry_Lever: Yes

Sissy: What kind of exercise would be helpful but safe for a child with HCM to do that has already had a myectomy and has an ICD placed.

Dr__Harry_Lever: They could ride a bicycle, swim, golf, bowling, walkingno competitive sports. Make sure you talk to your child's doctor first before starting an exercise program.


Stem Cell Therapy, Research and HCM

AmyB: Stem Cell Therapy. We are looking into new / cutting edge option to help with my dad's Hypertrophic Cardio Myopathy. We have applied to numerous trials both in the US and in London but because he has Non Hodgkin Lymphoma he does not meet the inclusion criteria. We recently found a hospital in Germany that is doing recognized cardiac Stem Cell work - Klinikum der Johann Wolfgang Goethe-Universitat in Frankfurt. What do you know about the success of these treatments? What is your opinion about going to Germany to benefit from this therapy?

Dr__Harry_Lever: I am not aware of these stem cell trials in Germany related to hypertrophic cardiomyopathy therefore I am unable to provide you with advice.

mmilton: Are there any gene therapy or stem cell therapy clinical trials planned in the near future? Preferably one that does not exclude patients with history of low grade Non-Hodgkin’s Lymphoma. Thanks.

Dr__Harry_Lever: No. There are no trials that I know ofbut you can search www.clinicaltrials.gov.

Barney: is there any HCM research that involves the use of stem cells - either to test medications / treatments or to determine the effects of stem cells themselves on hearts that are phenotype positive

Dr__Harry_Lever: Nonot at this time.

mmilton: Following up on a prior question regarding the German treatment, would either of you be willing to review for the purposes of a patient consult?

Dr__Harry_Lever: We could refer you to a physician who is an expert in stem cell therapy.

mmilton: Who would you recommend as an appropriate expert in stem cell therapy? Dr. Marc Penn ?

Dr__Harry_Lever: Yes. Dr. Penn is an expert in this area.

Barney: what are you doing ay CC that may in the near or not so near future offer new alternatives / treatments for those who have HCM - anything exciting

Dr__Harry_Lever: It depends on your anatomy and your situation as to new therapies.

Dr__Nicholas_Smedira: No major breakthroughs in the future but continuing to strive to reduce the need for mitral valve replacements, avoid a pacemaker if at all possible and accelerate the recovery for patients.

We have over the years improved outcomes and reduced complications for patients.


Alcohol and HCM

lsharron: Hello Doctors, I had a myectomy in November 2009. For the most part, I have recovered and have better exercise capacity than I did prior to the surgery. Question is this. every once in a while I feel an irregular beat or group of beats. I also had one episode of extreme dizziness for 3-4 seconds. I did not faint. I did have 3 drinks earlier in the evening. How concerning is this episode and what about the irregular beats? Also, I have LBBB since the surgery. I do have an appointment follow up in February with Dr. Lever.

Dr__Harry_Lever: Alcohol and HCM do not mix well. Alcohol can cause rhythm disturbancesbut we do need to monitor the rhythm. Please contact Dr. Lever sooner than your appointment, they may need to put a monitor on you to determine your heart rhythm.

Dr__Nicholas_Smedira: Most all patients after myectomy have a LBBB.


HCM and Right Sided Obstruction

Moosedreams: With HCM it is always the left ventricle and obstruction to the aorta that is discussed. Can HCM cause any problems to the right side of the heart? If so, what are they and what are the treatments? Thanks for your time and expertise today doctors!

Dr__Harry_Lever: In rare cases you can have obstruction to the right ventricular outflow tract and surgery would be considered - but this would be very rare.

Dr__Nicholas_Smedira: In the thousands of patients we have operated on for left side obstruction , we have had to remove muscle from beneath the pulmonic valve in 2 patients.


HCM and Cardiomyopathy

fishing: I have been told that I have HC and Dilated Cardiomyopathy. Are they the same, of similar, or can you have both?

Dr__Harry_Lever: Dilated cardiomyopathy can occur in patients with HCM. HCM can go on to form a dilated cardiomyopathy.

HefJet: is septal hypertrophy the same as cardiomyopathy if not what is the difference between the two

Dr__Harry_Lever: There are different types of cardiomyopathy. Septal hypertrophy is one type. You can have hypertrophy of the apex or lateral wall of the heart or abnormalities of the papillary muscles.

Dr__Nicholas_Smedira: Cardiomyopathy simply means that there is a problem with the heart muscle. We see cardiomyopathies after heart attacks - called ischemic cardiomyopathy. We see hearts get big and dilated after a viral infection - these are called dilated cardiomyopathy and if the muscle is thick it is called hypertrophic cardiomyopathy.

To make things complicated, a patient can have more than one type of cardiomyopathy.

SandraKin: I was diagnosed with Cardiomyopathy about 15 years ago...is it possible for this condition to simply go away on its own?

Dr__Nicholas_Smedira: Not if it is hypertrophic cardiomyopathy. Other types of cardiomyopathies with appropriate treatment are possible to get better.


HCM – Second Opinion Consultation

Hoppy: I have HCM, and have been treated with meds(ace, beta+calcium channel blockers, diuretics) and have had all the tests for HCM. I am in distress, having trouble breathing with any exertion, and for some reason my Cardiologist is hesitant to make out the paperwork, for an evaluation at a specialist center. I am a white male, 65 years old, with Medicare, and MVP Gold HMO health insurance, that lives in upstate New York, and needs the DR's paperwork to get pre-approval to do this. What can I do to get some relief?

Dr__Harry_Lever: First – you need to check your insurance to see if your HMO will allow you to come here – In some cases, you may need to work with your cardiologist to allow this to happen. You may need to be your own best advocate. If your cardiologist will not work with you – you will need to find someone who will. If you need to reach a Cleveland Clinic Financial Counselor - please call 216.444.9434 (long distance, call 800.223.2273 ext 4-9434)

Hoppy: In my first Question, I forgot to mention that my septum was 2,2 cm with echo, non obstructive, and I am fluid overloaded, taking furosimide, and metolazone, and Ranexa and my lungs are clear.

Dr__Harry_Lever: Please call the HCM Center to discuss your condition specifically. See my.clevelandclinic.org/heart/about/specialties/hypertophic-cardiomyopathy-center.aspx for information on the HCM Center. You can call Dr. Lever's office to discuss.


Arrhythmias: Medications and Devices: Defibrillators and Pacemakers

millerfive: Could the degree of thickness of your septum wall alone determine whether you should have a Defibrillator implanted? In the past I have heard 3.0 or thicker puts a patient at higher risk for cardiac arrest...is this still true?

Dr__Harry_Lever: We are examining patients very carefully to determine if they need a defibrillator implanted and very frequently they do need one when it is greater than 30 and there other risk factors that we consider as well.

These include family history of sudden death, response to exercise, syncope or loss of consciousness and ventricular tachycardia on holter monitor.

AmyB: What do you know about a drug called: Tikosyn. It is being recommended by my cardiologist to try. I have been in afib since1995. After several cardio conversions .- the latest on in Sept 2010 -which lasted for approximately 1 month before going into ATach / and AFib. They are proposing another conversion followed by 3 days in the hospital to start Tikosyn.

Dr__Harry_Lever: Tikosyn is a reasonable drug to use in patients with atrial fibrillation, but you must be under a doctor’s care to start it - as you have described.

Moosedreams: Is heart block common with HCM patients and if so is heart block a degenerative disease?

Dr__Harry_Lever: It is not common but it can occur.

AmyB: This month the FDA approved the "Arctic Front CardiacCryoablation catheter system device". As we understand it this may give AFib patience a better option to manage and / or eliminate their AFib. What do you know about this treatment? Is it being done by anyone other than Massachusetts General Hospital in Boston?

Dr__Harry_Lever: This is new therapy. It has been used in relatively few patients and it is not clear whether this is better than current alternatives.

Barney: what is your opinion of wireless (no leads) ICDs. Are they recommended as a safe and equivalent alternative to wired ICDs and the associated risk of leads that have to be threaded through an artery and may fail later.

Dr__Harry_Lever: We are not in favor of them at this point. There is not much experience with them. Frequently when patients experience a shock from an ICD the heart beat does not return spontaneously and backup pacing from the device is frequently required. That is not possible with a wireless device.

millerfive: I am 42 year old male with asymptomatic hypertrophic cardiomyopathy with a septal wall measuring 3.0cm; my Dad had dilated cardiomyopathy and died of cardiac arrest at the age of 64; there is no other family history of cardiac arrest in the family. Based off of this information only, would you recommend I have a Defibrillator put in?

Dr__Harry_Lever: You should be evaluated to determine the answer to this question.

Fredd: Hi Dr. Lever and Dr. Smedira, I'm wondering if you can tell me how often a pacemaker is needed after a myectomy?

Dr__Harry_Lever: It depends on what the electrocardiogram looks like before surgery - if the electrical mechanism is normal, the risk is 3% of needing a pacemaker.

Medtol: I am 39 years old suffering from nonobstructive cardiomyopathy with little dilatation ,frequent arterial fibrillation and one episode of paroxomal ventricular tachycardia one month ago I was operated for ICD (implantable cardioverter defibrillator of St. Jude medical and feeling good ,my question is what medicines I should take for further care? and prevention of episode?

Dr__Harry_Lever: You should be seen by a cardiomyopathy expert.


Leads and Devices

Bruce Wilkoff, MD
Director,
Cardiac Pacing &
Tachyarrhythmia Devices,
Department of
Cardiovascular Medicine,
Cleveland Clinic Miller
Family Heart &
Vascular Institute

Cleveland_Clinic_Host: We received a large number of questions about leads and devices.

These were answered by Dr. Bruce Wilkoff.

Barney: Do you recommend that potentially faulty (Medtronic) leads be surgically removed when new leads are inserted — what is the current state of that surgical procedure. That is, is the risk of their removal less than the risk of leaving them in yet?

Dr. Bruce Wilkoff: Leads that are functioning but have an increased risk of failing are still much more likely to work well than they are to fail. So, we do not usually remove functioning leads and replace them. However if a lead is not functioning and there is a need to replace the function of the lead, we would generally remove the non functional lead. We do that because we have a very experienced and skilled team of physicians, nurses, anesthesia and others who have an excellent track record and have demonstrated that this can be done at relatively low risk to the patient. The actual decision depends on what the patient wants done after the risks of extracting or not extracting are explained in their particular situation. The overall major complication rate has been less than 0.5% at the Cleveland Clinic for many years

Fredd: How risky is the surgery to remove the recalled leads? (the ones where the wires are too thin and fracturing). Or instead, should they just be capped and new ones put in? (I'm only 40.)

Dr. Bruce Wilkoff: The younger the patient is, the more likely that it makes sense to remove the leads. The risks depend mostly upon how much experience the extraction team has in doing procedures similar to the anticipated situation. The overall major risks of internal bleeding requiring surgery or resulting in death is less than 0.5% at the Cleveland Clinic. The LEXICON TRIAL, which we were the leading investigating center, looked at 13 experienced centers and the results were similar, but better for the highest volume centers.

Moosedreams: Is there a rechargeable (without surgery) AICD or pacemaker in near future?

Dr. Bruce Wilkoff: During the middle 1970’s there was a rechargeable pacemaker and even a nuclear powered pacemaker, both of which lasted very long times. The battery technology has gotten so good with lithium cells that it is difficult to compete on longevity, cost and size with rechargeable models. Patients needed to sit with a wand over their pacemaker for several hours once a week to charge and then the pacemaker was very simplistic, nothing like current models.

Fredd: What kind of arm exercises can be done in someone with a recalled (higher risk of fracturing) lead, since it is recommended that repetitive motion is not recommended in that arm.

Dr. Bruce Wilkoff: Normal activities are fine including light weights, but heavy weights, push ups, pull ups and similar activities put any lead at risk for failure. You will get different advice from different physicians and there is no data from which to say that there is any protection by not doing any exercise.

AnjelicaJ: Thank you for taking care of our hearts!

Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Lever and Dr. Smedira is now over. Thank you again for taking the time to answer our questions about hypertrophic cardiomyopathy.

Dr__Harry_Lever and Dr__Nicholas_Smedira: We were happy to be here today.

Reviewed: 01/11


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