Houston Care, HCM Afib/Aflutter

[HCMBetter]

I have 2 basic questions.

1a. I am moving from Connecticut (NYC area) to Houston. I have HCM, and I have atrial arrythmias right now. I was wondering wether it was more important to have an HCM specialist for my disease or an EP with experience with ablations?

1b. Based on that answer, I was wondering if you could recomend a good HCM cardiologist or good aflutter/afib arrythmia EP in Houston (or even Austin or Dallas, I would consider the drive). Please let me know. Like most, I don't want your average Dr, I want the best in that area.

2a. I had afib. I did endoscopic ablation in NYC with Johanathan Steinberg, little success, some natural cardioversion, but only after months of being in it. He said there was a lot of scarring and foci. I had thorocascopic ablation with Li Poa in CT. He said in the lab it looked like complete success, he was able to isolate almost everything, however, I am now having aflutter, and EKGs suggest it is still coming from left atrium. There is progress, I cardiovert now after about only 7 or 8 hours in it. And it only happens like once every few weeks. However, I get pretty sick w/HCM and 125bpm. Poa feels there might be areas left to ablate, but would first rather lower my rate with cardizem and atenol to diminish the effects of aflutter, before sending me back to an EP for another endoscopic ablation. I will see how this plays out. My question for the future is can someone eventually ablate everything? Or am I going to have to live w/aflutter? Have an open heart maze? Have a synus node ablation? Who in the country can help?

2b. Could raising my pace rate on my ICD from 60 bpm to something like 75 help prevent the aflutter? What about decreasing my meds? Or changing from tykosin to amioderone? Are any of these treatments worth mentioning to my doctor to help prevent the aflutter in the mean time?

[HCMBetter]

Doctor, thanks for the answers. I called Natale's office in Austin, but cannot get into to see him until April or May, which means I have to live in aflutter for the next few months. As Ive mentioned before, I get pretty sick in arrythmias, so obviously I do not want to wait. Do you have any suggestions to get bumped up in his schedule?

Also, I need someone more locally in Houston. I got the name Doug Mann in Houston from the HCMA, but I tried to make an appointment, and he's in high demand too, and not taking new patients. Do you have any referals for Houston? Good cardiologist, preferable EP, if not HCM specialist? I need someone right when I move (around Christmas), because I have to stay on top of my INR.

Please let me know if you can refer anyone (good) in Houston, and how I can get in to see Natale earlier rather than later. Thanks.
-Robert

[Michael J. McWilliams, M.D.]

1a.  I would choose c: both
1b:  I do not know a HCM specialist in that area but I am sure there is one.  Andrea Natale relocated his team to Austin Tx.  
http://stdavids.com/sdtcai.aspx
There are not better hands in the world for ablating atrial fib and atrial flutter.
2a: Not every arrhythmia can be ablated.  Whether or not you can be cured or at least given a temporary reprieve will take good judgment.  Just because a procedure "can be" done does not mean that it should be done.  They will have to make an educated decision on your probability of cure before entering into another procedure.  Natale is very good in situations like this.  I would not do an open heart procedure unless there is another indication for an open heart procedure -- like a myectomy for your HCM.

2b. There is no data to suggest increasing pacer rate will decrease flutter.  I cannot assess if  you can come off medications.  Amio has higher efficacy but also increased side effects compared to tikosyn.

The amio versus tikosyn discussion is reasonable.  When you are in Tx, it is probably worth scheduling an appointment with Dr. Natale.