Frequent PVC's

[J Newell]

I'm hoping someone in this community can give me some help and a better understanding of what's going on. My husband has HCM. He had a septal ablation in 2004 and a pacemaker/icd implanted. It was a success. Now, some 6 years later, he has been experiencing fainting episodes, light headedness, and headaches, especially when he lays down. He has been to many doctors, both heart and neurologists. They are now saying because he has frequent PVC's - he is experiencing over 1 million in 2 months time, or just under 600 an hour we are told. So from my reading, he isn't getting enough blood pumped to his extremities. So far, they have put him on an additional medication, amiodarone and he takes 100 Toprol XL. Basically, we were told to wait and see how he does on the new med. I honestly don't know what this all means or what to do next. I'm not very good at waiting. Any advice would be greatly appreciated.

[LindaSo]

Hi "J", welcome to our community. Are you seeing a cardiologist well versed in HCM? If not, I might recommend that you do as your next step. There is a HCM Specialty Center (Center of Excellence) at Stanford. I cannot speak to the addition of amiodarone and it's impact on the PVC's, but I did a little calculation. PVC's at 600/hr is equivalent to 10/minute. That's alot!!
Linda

[Pam Alexson]

First of all welcome. I am giving you a link to a comprehensive explanation not knowing what you have read so far.

http://www.mayoclinic.com/health/pre...ctions/DS00949

Additionally, I would be interested to hear where he was seen or is seen for his HCM. I would highly recommend that you coordinate a time and contact the HCMA office for full explanation and expert advice. HCM can be a progressive disease and seeing the right people at the right times and getting the best treatment is always the best we can do for our disease management . To say there are a few hacks in this world treating HCM with less then expert abilities and skills is an understatement given the number of people we have talked to over the years who have been under diagnosed, misdiagnosed and mis- managed.

Please make the call and know we are here to help.

That's a LOT of PVC's

[Cynaburst]

I 3rd the recommendation to get to a Center of Excellence. You can call the HCMA office and get a more thorough understanding of your options first - 973 983 7429 or you can call Stanford's HCM Center for an appointment to see someone on their team.

The bottom line is that HCM is a very complicated disease and it changes over time. The ablation that your husband had can cause scar tissue on the heart, and this can cause problems later on, like now. It is therefore very important that he be seen at a place with experience with these matters which are highly technical and require someone who has a thorough understanding of the HCM heart. These folks are not always that easy to find.

[mbcube]

2004? Wow, he must have been one of the first! When I was DX I spent nearly a year and was really headed towards the Ablation route when I found the HCMA and did a lot of homework.
It is VERY possible that his obstruction has grown back below where the vein was ablated in his prior surgery. He really does need an expert who is experienced in doing rework from prior ablations. If not Stanford, then Mayo, Cleveland or Tufts (or the other COE's, these 4 come to mind the first). A call to the office may be the best thing to point you in the right direction. Please do update us on how he's doing.

[J Newell]

Wow! Thank you, all. You have given me new hope. My husband was #2 septal ablation at UCSF. He was treated by Dr. Chattergee, but he has since retired and moved on.
I will be contacting the HCMA office in the morning. I have been researching Stanford and it seems there has been a lot of changes over the years. I am particularly interested in the Biventricular pacing/cardiac resynchronization therapy since we were told he has pvc's coming from different sides of the heart, therefore a second ablation wouldn't help. I am definitely going to get a second opinion at Stanford. Thank you!

[gfox42]

That's a lot of pvc's. Just curious -- how were a million pvc's recorded over 2 months? Most monitors and the like have much smaller memories than that.

Yes, a call to the HCMA office and a trip to a Center of Excellence -- Stanford if that's the one you want -- sound like exactly the right things to do.

Gordon

[J Newell]

1,386,000+ pvc's recorded from his icd/pacemaker over a 2 month period.