Home Dr.'s knowledge of HCM limited; ? about Cleveland

[tomsgal]

My husband saw another cardiologist in our home town just this past week. He looked at all the test results we had brought in and basically 'dittoed' everything we had heard before. My husband's echo states 'severe concentric hypertrophic cardimyopathy" - and we had received the diagnosis of HCM from the first cardioligist. (My husband had an EKG, Echo and Heart Cath done in May) However, his measurements are not extreme, but he is very symptomatic. All the docs here seem to do is remind us of the 'sudden death' that can occur in these cases, 'sluff off' his complaints of symptoms (Fatigue, cough, heavy chest, etc.)and tell him what he has is 'not that bad."  We have little info and no treatment plan... aside from one beta blocker which does not do anything to relieve his symptoms.
He seems to be getting worse -and they have ruled out that it is not a side effect of the medication.
We would like to come to your highly recommended clinic for evaluation - however,we live in Central Florida. Is there someone there we could talk to that could guide us on the steps to take? What reports to bring, insurance, etc?
Appreciate you help!
Thank you

[RTFLY]

The cardiologists I'm familiar with are Dr's Aurelio Duran and Jonathon Partain. They are located in Orlando. Very good and hopefully can help you. I am shocked that no one at Florida Hospital could help. Look these guys up and see what happens. If they can't help they may be able to point you in the right direction for a local contact. Then again, they may send you to Cleveland. Anyway, it's worth the try. Good luck and take care!
                                                   J.C.I.

[tomsgal]

Thank you for your comment and info about hospitals here in Central Florida. Yes, I have heard that Florida Hospital (South) is rated as one of the top cardiac care facilities in the country. As a matter of fact, that was where hubby had his heart cath done. (They transported him via ambulance from our local yocal hospital which is about 30 min. outside of Orlando) Although I was impressed with the hospital there and how that paticular procedure was handled, we have had no luck with getting answers or a treatment plan for his HCM by the doctor who did the heart cath. I've yet to find a doctor associated with the hospitals you mentioned that specializes in treatment of this complicated disease. If you know of someone, please let me know - certainly would prefer to find someone here before taking on a trip out of state for treatment. Thanks!

[RTFLY]

I hope you and your husband find the answers and help you need soon. I must acknowledge that while the Cleveland Clinic is certainly the benchmark for cardiac care in this country, you have at your disposal much closer resources. The Florida Hospital-Orlando and the Orlando Regional Medical Center are rated as some of the best cardiac hospitals in the country as well. Certainly, as mentioned, The Cleveland Clinic remains on the forefront of excellent cardiac care however, I would certainly want to exhaust closer resources before embarking on a greater journey. Just a thought...good luck!
                                                  J.C.I.

[CCF-M.D.-RCJ]

tomsgal,

I read your posting on 8/18/02 and agree that you would be best served by seeing a specialist at a major medical center.  I would recommend seeing either Dr Harry Lever or Dr Craig Asher at the Cleveland Clinic.  Both are fantastic for HOCM or other types of severe LVH.

Go to the Cleveland Clinic website (www.ccf.org) and search the "appointments" or "physician directory" subsites.  Alternatively you may call 1-800-CCF-CARE to setup a consultation.

Good luck.