Re: Feeling like there is no consistant support
I have both doctors and frankly, I do what Ommen says. Siegel is fine for aftercare and yearly echo's and follow-up for meds. The surgery will allow him to eventually lower his dosage of meds and this (along with surgery) will make him much better. IF after, say six months, your better half is not feeling 100% then check into the sleep apnea. Us HCM's do seem to see alot of S-A. I have a mild case and felt much better after surgery. I choose surgery after I max out on meds.
As for Doctors in LA - Sadly, no. There are some decent HCM docs at UCLA (Michael Lee, not sure if he's still there). As Siegel is Head of Echo at Cedars, he's often behind schedule due to ER emergencies. Also, Cedars has increased the Patient load per day so the experience is not the best, but he and his staff are great. He actually walked me out to the lab (a hike from his office) which I thought was a rather personable thing for him to do. I see him yearly and I've had one follow up with Ommen 2.5 years after surgery (past out/ICD fired, were the reason).
BTW, My care at Mayo, with all tests (echo, full lab and stress) including air AND hotel is cheaper than a visit to Siegel.
Diagnosed @ 48
Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
Father to 3 boys 18, 22, 26 (all currently clear - pending genetics)
AICD - Valentines Day '08
After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
Quietly going insane . . .