Complete Congenital Heart Block - 38 - pacemaker?

I have been diagnosed with 3rd degree congenital heart block.  I am 38, my heart rate avg is 45, went as low as 35 and can go as high as 109-120 when on a stress treadmill.  I have no enlargement of the heart.  I have never fainted, but I definitely feel fatigued, occasionally slightly dizzy, and have postural hypotension often.  My ep is currently NOT recommending a pacemaker, but would put one in if I chose to anyway...and says he'd like to do echos yearly to watch me close.  I have a great deal of respect for my ep and cardiology group...but feel troubled by this decision being placed in my lap - I would rather have had them choose for me.  My concerns are mostly due to sudden cardiac death, since I am sort of asymptomatic and not uncomfortable on a daily basis.  What is the percentage risk or likelihood of a stokes adams attack in someone like myself?  Does that risk increase with age?  Will a pacemaker completely eliminate death as a result of a SA attack?  I realize that the pacemaker itself is a fairly simple procedure, however, as I am only 38, I will definitely need replacement leads over time, and the risk factor of lead removal surgery has me quite frightened.  Most of the data available for CCHB is either old or hard to find.  It seems that pacing is suggested in nearly every case especially with increasing age.  These days when infants are born with this they are immediately paced...I seem to have been a "lucky" one with no other structural defects and a relatively reliable escape rate.  Some data I have found that individuals can survive into their third decade without pacing...hello...I'm almost to my fourth!  

I guess to finalize my question, here it is:  should I get a pacemaker, and what are the risks with lead removal and how can I lessen that risk, and will getting the pacemaker shorten my lifespan (even with the prevention of SA)?

Thank you for any advice...

[bbxx]

Hi. I know I dont have the answers you are looking for, but my brother had 3rd degree heart block and 2 other issues (congenital) and he made it till 20, always told by his regular doctors that he was super fit since he had  50 pulse. When he was 20 however, he suddenly collapsed, and the ambulance said his heart rate was 20 something, and they thought he was going. They put in the pacemaker and now he just recently had a new battery put in--his leads were still good (10 years later). He was told he only needed the pacemaker due to having 3 issues, (one was a hole in his heart). Anyway--whats odd though is everything I read says 2nd degree usually and 3rd degree always requires a pacemaker. His 20 bpm seemed to come out of nowhere one day. I guess inspite of the way I hate drugs and invasive stuff--if I were 3rd degree-I would get the pacer. It seems they are making them better and better all the time.

[sandk]

Thank you so much for your reply...as I mentioned, it is really hard to find others in my situation.  Just hearing about your brother help me to formalize my gut instinct to have the pacemaker put in.  I, too, have read that there will be no "sign" or strange symptoms to watch for...that it will just happen.  I think it is time to let go of my what if fears about maintenance surgeries, and focus on what I can do to prevent leaving my family (hubby and 3 kiddos) high and dry.  Maybe the one thing I can really focus on is researching the best cardio for lead extraction in my area, if, in case, after the surgery I get a broken lead or something, then I'll be prepared on who to call that is best qualified.  I've heard they have simulator machines (like pilots have) to teach laser sheath lead extraction, so I know there are individuals that are more aptly able to do this type of procedure.

Thank you, again, for your reply...and I wish your brother and you wellness this year!

[bbxx]

You are welcome. I dont think the lead breaking is super common. My brother is a hard worker. He chops wood, stacks and carries it (leans on the pacer) and he does all the things guys do---basically never being careful of it--although we girls will yell at him. I am glad you are going to go. I really am convinced I would if I had probably 2nd degree.