2nd opinion on beginning symptoms

I just got home from my second opinion. I saw my hometown cardiologist. I have 3rd degree asymptomatic heart block. He says to cancel my surgery on the 21st for now. He says he hasn't heard of new recommendations to go ahead and pace patients like me but wants to research it further and have me do a treadmill test. My heart block was discovered 10 years ago by accident when I went to a cardiac arrhythmias class at work when I was 25. I am a nurse. I was happy to hear the news and look foward to what his research shows. I told him about this site and some of the feedback I've got from you guys. He was going to look at this site as well. Thanks for all the support I've got here. Lori

5 Comments

To pace or not to pace?

by juliek - 2007-08-15 01:08:59

Hi Lori
This is my second time writing this, so hopefully it will work this time. I’ll apologise now for such a long posting, but here goes

I hope you are doing well. With regard to the current guidelines on whether or not to pace CCHB patients, it really is a minefield. There are such conflicting opinions. Some will recommend a blanket paceing of all. The guidelines from the American college of Cardioolgy were updated in 1991, and there are some indications to pace complete AV block patients. With regard to Sara’s post, one feature I have noticed that is consistent is that if the patients heart rate is less than 40 then they should be paced, irrespective of anything else. This may go some way toward explaining why Sara was paced??

I think a lot of the current thinking on CCHB patients is summarised in an article by Kertesz at al, (1997) Congenital Complete Atrioventricular Block, Texas Heart Institute Journal 24; 301-7. In this they address the question to pace or not to pace. They conclude that “The asymptomatic patient with no associated heart disease still presents a treatment dilema. Despite studies in large cohorts of patients without congenital heard disease, reliable indicators of syncope or sudden death have yet to be determined”.
There is also, in my view, a very interesting an informative paper published by Michealsson et al., (1995) isolated congenital complete atrioventricular block in adult life. A prespective study. Circulation 92; 442-9.

In summary my overall understanding of the situation is that asymptomatic CCHB is very rare, and there are probably some people with it walking around, unaware that they have it. Many of these adults will go on to lead normal lives, albeit symptoms often appear between age 30-40. However, some will develop severe symptoms. Unfortunately there is no predicting the severity of the first symptom or to whom this may occur. Therefore, it would seem that the prudent approach is to pace all patients.

In my own case, my CCHB was diagnosed at 8, quite by accident. The cardiologist told my parents and doc that it was little more than a curiosity and he didn’t need to see me again unless I should present with “unexpected wobbles”. My health insurance company had a complete wobblie when I mentioned it a few years ago so I got checked. My current cardiologist is more of the old school i.e.leave well enough alone. However, he did refer me to an EP for a second opinion (younger chap). First thing he asked was how would I feel about getting a pacemaker? Since then I have asked a lot of questions and read a lot of papers and although I am currently asymptomatic I will get a pacemaker in February.

You may be interested to read some of the replies I got when I first posted on the pacemakerclub.com.
(http://www.pacemakerclub.com/public/jpage/1/p/story/a/storypage/sid/4623/content.do)
If you cant get this link then here is one particular response that I found useful
found some of the emails I received from top notch researchers in the country who have done recent work on CCHB. I had found there work in medical journals and emailed them for some general info. I never expected them to reply and yet they all did in about one day. I'm not trying to sway you, I just thought it might help to get as much information as you can as you make your decision.

Here's some of what they said...

"I would refer you to an article in Circulation by Michaelsson who studied a large cohort of congential AV block patients over a long period of time. The results of the study showed that there were adult patients who were asymptomatic and who essentially died suddenly of a so-called Stokes-Adams attack. Mitral valve dilation as a result of the need for the left ventricle to dilate in order to handle a larger stroke volume (the amount of blood ejected from the heart each beat). The stroke volume has to be larger because the heart rate limits the amount of blood ejected over a minute (the cardiac output) which is a metabolically driven quantity. So the heart can either speed up and eject a smaller amount of blood each beat or slow down and eject more blood each beat. Regardless, a determined amount of blood is needed each minute. In fact, most adults with congenital AV block do have (a probably should have) a pacemaker."

"Several years ago, it was thought that kids with CCHB did not need pacemakers as long as they could increase their heart rate with exercise. However, subsequent studies have suggested an increased risk of sudden cardiac death due to these Stokes-Adams attacks and an increased risk of congestive heart failure in adults who have not had pacemakers placed. So, yes, we do recommend pacemakers for the majority of patients with CCHB."

"First, I recommend you have an echocardiogram performed and a consultation with an adult cardiologist who SPECIALIZES in taking caring of adults with congenital heart defects...centers in the midwest who have such cardiologists are the Cleveland Clinic, the Mayo Clinic, University of Iowa, and Ohio State University. On the east coast, University of Pennsylvania and Harvard (associated with Children's Hospital of Boston). A pediatric cardiologist at the National Children's Medical Center in Washington DC also sees adults. On the west coast, UCLA and University of Oregon have such specialists. If I can assist you in any way with a referral to any of these places, please let me know. It's very important to proactively follow adults like yourself. Usually they do well until the late 30's or 40's then troubles may ensue."

Sorry for the long post. I hope it may answer somne of your questions, or at least point you in the right direction.
Good luck
Julie

Thanks

by Lori - 2007-08-15 06:08:57

Thanks for the comments. I may print them off when I go for the treadmill test on the 29th. It is a hard decision to make. My heartrate is usually about 46. Yesterday on second opinion day it was 41. His opinion was so different than the EP. I actually saw this doctor 10 years ago when I first found this. He told me that day I had a 70% chance of having a pacemaker. He sent me to an EP then. I saw him, the EP on my 25th birthday. The Ep then said he'd discussed it with his colleagues even a pediatric cardiologist and they didn't reccommend pacing. He told me not to ever let anyone tell me I couldn't do anything I wanted to. He is now retired. He did say I would probably need one when I was older. Lori

Wow! Me, too!

by MJH - 2007-08-15 10:08:59

Lori, Put it off as long as you can! I'm the Mom of an 18-yr.-old gal who's on her second pacer for complete block. I feel just like you, Sara, and Vicki. Please read
my "bio" that describes my daughter's situation. I would love to hear your comments.

I did really question the need for the replacement pacer in 2002 (lead fractured on 1998 one) and cardiologist said K couldn't get her driver's license if she didn't have a pacer! That took care of that (but not really for me). The 1998 pacer is still in K's abdomen and now the current one is a recalled Medtronic Sigma that they don't want to take the risk to replace. Smitty (Looks like you're the guru here), how many pacer, generator, and lead replacements can they do over a period of 70-80 years???? Thanks guys and gals! MJH
(K did have one or more fainting spells before we knew first pacer lead was micro-fractured.)

Same Here but Different

by Vicki - 2007-08-15 12:08:27

After reading Lori's post I felt the same way Sara. I have never had a problem with low pulse as far as I know. In fact it was the opposite..irregular and high at times (SVT). Anyway, was rushed to ER one month ago feeling very strange. Turned out I had complete heart block. Was admitted and taken off Toprol 100mgs. to see if that was the problem. Three days later pulse was still low 40-45 range. So, pacemaker was the answer. I had three doctors (ER doc, my cardio and his partner) tell me that I probably would need a PM at some point even if the Toprol was the cause. Well, the toprol wasn't the cause apparently and they said I had to have one. Doc said that even if my pulse came back up to normal range, this would definitely happen again and that I could be driving and pass out. Since having the PM installed on July 18th, I have had two visits to doc and both times I wasn't pacing and my heart was doing it's job. Makes me wonder too. If you want to compare stores or just vent, feel free to e-mail me at vicster1234@hotmail.com

Lucky You

by saragunther - 2007-08-15 12:08:28

After reading your post I am really beginning to wonder if I needed a pacemaker. Like you I have asymptomactic third degree heart block and was implanted in February of this year. Before my PM my heart rate was 38 to 40 BPM and now it is 60.I was told that after my implant I would have alot more energy and would feel better. Well I still feel the same as I did before the PM and I never really felt bad before it. When I asked my cardiologist what would happen if I didn't get the implant she said that I would probaby be alright without it but the worse case scenario would be that I could suddenly die. I thought that was a strange answer and also sort of scarey so I went ahead and had the implant.Now I wish I would of had a second opinion. I have always wondered in the back of my head If I've done the right thing.Why did my cardiologist pace me and yours decided not to pace you? Can anyone shine a light on this for me? I would really appreciate any kind of feedback on this.Thank you Lori for your post because I've always wanted to share my feelings on this matter and you gave me the opportunity.Sara

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