short of breath and heavy chest feelings

[heidiline]

I have gone to my physician and a cardiologist already and am on a beta blocker for htn and arrythmia due to hocm. early stages.
I am constantly short of breath and it seems hard to take a breath in and rise the chest, heavyness.  This is constant.
I have a strong family hx of MI, father age 41. Hocm, two brothers.  I can't seem to get anywhere with my drs.  I can't stand this short of breath feeling. What do I do?

[Forum-M.D.-bkj]

heidiline,

It's frustrating. Sometimes, a patient and physician are worlds apart in their communication. First, I would discuss your concerns with your physicians and tell them your sympotms and concerns. If they aren't able to alleviate your worries or concerns, a second opinion may help.

good luck

[gtojohnny]

You need to see a Dr.  that has much experience with HOCM. You must seek out the best doc you can find. Do some research on the web. I too have HOCM with the symptoms you mention. I have had an ICD implanted as I am at risk for heart attack. My father also passed away at 41. The greatest indicator of your risk of sudden death is if a family member has. You have a couple of surgical options available which may alleviate symptoms and improve qaulity of life. You could have an alchohol ablation or a myectomy. Both operations aim to reduce the size of the obstruction, but have different risks, success rates, and recovery times. I have had the alchohol ablation with some success. You need to educate yourself and demand treatment from the best doctors. It is all too easy for doctors to put you off if they don't know that much about your condition. A good doc will realize his limitations and refer you to someone who has more experience with your condition. Good luck!

[Brothabill]

Alcohol ablations are not ready for prime time. Consider myectomy after careful discussion with cardiologists at a major university or heart center about if you are a candidate. It's worth the effort to see a specialist at a good facility and if it means travelling 2000 miles, it's your heart, it's worth it.

[heidiline]

Thank You to all.  My septum is measuring at 2.0 now.  My brother had a myectomy two years ago after having severe symptoms with arrythmias and shortness of breath.  He saw Dr. Lever at the Clinic and I will try to make an apt. with him thru my cardiologist.  My cardiologist did not think my shortness of breath was from this yet since the outflow track is not badly obstructed yet but he says there is a slight gradient change.  I would feel better being seen by a specialist who deals with this.  100mg of topral has helped but I still have episodes of the SOB and the feeling of not getting the lungs to expand, then I  feel slight panic and tiredness at these times. I am 51. My brother 46 and another brother 36 with hocom. Does anyone have any good web sites to read up more on this?  Thanks again , heidiline

[gtojohnny]

Alchohol ablations certainly are ready for primetime. I know the Cleveland clinic favors myectomy, but the ablations have had much success at some very reputable institutions in the U.S. and abroad. Baylor and UCSF come to mind. Do the research and make up you own mind. You can be back up and around in a couple of days with an ablation while a myectomy will takes weeks of recovery.