hypertrophic cardiomyopathy

[sugarcane]

Hello doctor, Thank you for taking my question. After being diagnosed with hypertrophic cardiomyopathy 6 years ago, I ontinue to have chest pain on a fairly frequent basis (several times daily) after slight exertion or after eating. I am on Atenolol, Norpace, and Cardizem and also have a pacemaker. I have recently heard that the drug Ranexa may be beneficial for certain patients with angina. Do you have expwerience with that drug? Do you know of its benefits and side effects? Someone told me that it was more helpful with men than women (I am a 50 year old woman.) Would the Ranexa replace or eliminate any of the drugs that I currently take? My septum measures about 2.0. I had a gradient of 60 unprovoked when diagnosed that went to over 200 with Dobutamine but since the pacemaker was put in and I started meds, my gradient is lower (resting is about 20, provoked with Dobutamine is 150-200.) Amyl nitrate does not increase my gradient significantly. Some doctors feel like I would be a candidate for myectomy, others do not. Any thoughts? Thank you again for your time.

[Forum-M.D.-MJM]

Hello,
I have not seen Ranexa used for hypertrophic cardiomyopathy (HCM).  You are on good medications with atenolol and cardizem.  Norpace is occassionally used for patients with HCM and atrial fibrillation.  It may also help decrease the gradient across the obstruction.

We do not use dobutamine induced gradients in our clinical decision tree but will use exercise and amyl nitrate.  Dobutamine can cause some people to have abnormal motion of their mitral valve even if their valve is normal and they don't have HCM -- so we usually don't use it in our decision tree for this reason.

I would recommend that you see someone that specializes in HCM -- Harry Lever at the Cleveland Clinic is very well respected and loved by his patients.  Nick Smedira is one of our surgeons that specializes in myectomies and has a very good success rate.  The took care of one of my relatives for an outflow tract obstruction a few years ago and I trust them.

Rick A. Nishimura is also very well respected in the HCM world at the Mayo Clinic.  These are just a few names, but they may help.

Hope this helps and thanks for posting.

[gtojohnny]

I too have HCM and I take Norpase and Toporol XL. I had a couple of episodes of AFIB and chose the Norpase to prevent them as it worked great converting me quickly. The idea was that if we could eliminate the AFIB episodes, I would not have to take Coumadin. It worked. As a result, it also decreased the gradient substantially. I too get chest pain after eating and notice that it is worse if I overeat or eat foods high in fat, sugar, or salt. Eat healthy, wholesome foods and you will feel better.

[EchoTech]

You could also consider an alcohol ablation.  This is where they feed a catheter into one of the smaller vessels that perfuses the septum and load it with alcohol, therefore inducing a small 'controlled' heart attack.  The heart muscle naturally shrinks after it is dead, therefore effectively elimnating the HOCM gradient at the LVOT level.This is obviously less traumatic than open heart surgery, along with the fact that the muscle can grow back after the myectomy, makes it a surgery that you might want to consider if it is affecting your quality of life.

[Frostie]

I am happy I found this thread.  I switched cardiologoasys a few months back as i was getting no answers form the former on a LVOT obstruction due to SAN witgh a 30 gradient.  This was goin gon for 2 years and no answers.  The new doctor ordered an Echo in October :Staes: to R/O LVOT Obstruction.  These results were smcuh better than I had seen in 2 years with the other doctor. LVOT:  No evidence of LVOT dynamic obstruction at rest.  Minimum gradeint seen with Valsalva. EF 70%.

Fast forward to March 30, 2007.  Another Echo...Same cardio group..different tech.  Both these techs have 15 years expereince, each.

I was told the Echo was good via telephone in late march.  Yesterday, I had a returen vfisit to the doctor and I asked to see the month old report.

I was shocked to read: CAD Unspecified Vessel, Hypertrophic Cardiomyopathy.  

LVentricle size is normal. Wall motion is normal.  Hyperdynamic LV function.  EF 70%.

LA/RA/Aorta Normal.  Aortic Valve Moderate focal calcification that extends into the LV outflow. Mitral Valve: Moderate annular calcification.  Systolic anterior motion of the anterior leaflet is noted. Mild reguritation.  Pulmonary Valve/Normal
LVOT: LV Outlet and Intraventricle gradient of 36mmHg noted.
Diastology:  LV relaxation is impaired.  LV filling pressure borderline elavated. PE:  No pericardal effuson is seen.  Estimated PA sytolic pressure is 25mmHg assuning a mean RAP of 5 mmHg.

Sorry for the length but the words of Hyperthropic cadiomyopathy is scaring me as I do not understand what all this means and the new doctor brushed this off.  I have already had a silent heart attack in the distal sepum/apex.  I do have symptoms.  I am on cardizem and Plavix and Avapro and baby aspirin.  I am unable to ask the doctor as the forum questions is full.  

Does anyone know what all this means and does it look bad?  Thanks so much.  My BP is all over the board and HR is normally high and gets higher with the least bit of exhaustion. Thanks soo mcuh. P/S.  The doctor said I would live till I am 80...Do you suppose he had too much wine? )-:

[Frostie]

Please excuse all the spell errors on my recent post.  I am re-reading this now and I apologize.  We need a spell check on here. (-:

[gtojohnny]

You should see a cardiologist who has experience dealing with HCM. Elevated heart rate is a symptom and you should be on meds to bring it down. I would definitely be concerned that you are not getting the answers from your current doc. Find another one who will give you the answers. One thing I've learned is that you have to be proactive and demand attention. Good luck!

[brandt]

i using this route to ask a question b/c it siad forum was full.  I have a 10 year old daughter that has been referred to a ped. cardo. for a lower left ventricle block (2nd ekg) and the 1st ekg showed something about the axis not being lined up ?????  She has been on ADHD meds for about 4 years and remeron for anxiety for 3 months.  I have another appt on the 15th. I am wondering if there is anyone out there that can help shed some light for me.

pls. and thk u

[Frostie]

Thanks johnny.  I thought I was going to one of the very best Echo docs in the SouthWest (Texas).  Something is not right.  I know probably the very best ECHO doctor in the U.S. is the group at Clevelnad Clinic, i.e. Lever and staff but you would think there would be someone almost as good as thery are to help so there is not an avalanche treking off to Cleveland clinic.  I see there is an ECH tech on this site.  I wonder if he could comment.  I am really frightened. I cannot logg on to ask the doctor as the forum is alwsy full. Thanks Johnny.

[gtojohnny]

Frostie,
If you are in Texas, you should find great docs at Baylor. I believe the first alchohol ablation in the U.S. was performed there.  Bottom line is that if you indeed have HOCM, it must be treated. The fact they you were not informed until you asked to see a month old report, worries me. HOCM is a seriuos diagnosis that requires a lifetime of treatment and monitoring. It should not be ignored. I have had the alchohol ablation surgery that was mentioned by the Echo tech in an above post. It was somewhat successful in reducing the obstruction. Good luck!