Considering PM surgery

Hello: I am brand new to this site. I would like some feedback from anyone who has had a similar medical history and opted to have a PM.
I have had UNCOMPLICATED SVT ONLY for about 10 years and 2 unnsuccessful ablations. Tried 3 meds, beta and ca blockers no success.Just made me sick and dropped my bp. Now on low dose rhythmol twice a day...it has decreased the length of my tachycardia runs but not the frequency...I still get it (on average) about every 10 days. I have had it as long as 17 hours and short as 10 min. Never the same. The quality of my life is really decreasing. I am getting older and worry about consequences of that. Otherwise I am in good health. But I am sick of this and its horriffic when traveling out of country. I am now considering a pacemaker.Any input or advice from someone with a similar experience who now has a PM most appreciated..
thanks

from upstart

3 Comments

PM + AV node ablation?

by SaraTB - 2010-09-21 06:09:48

Are you considering a PM combined with AV node ablation? Because if not, I don't see that a PM will necessarily have any benefit on your SVT. However, I will presume that you are intending to have the ablation and PM as a way of eliminating the SVT altogether.

I had SVT for a couple of years, felt terrible most of the time, unable to control it effectively with meds, merely reduce it. Was having daily runs, often more than one. Cardiologist recommended ablation to eliminate the SVT. Unfortunately my AV node was damaged during the procedure and I ended up in 3rd degree heart block. My PM was implanted the next day, so I had no time to think about it.

I will say that it has ended the SVT completely. I take no meds at all (I was 42 when it was implanted, now 50) and live an almost completely normal life. I get a little breathless going upstairs, but that's all - and having co-incidentally today had Rate Response turned off, finally, I'm hoping that will be a thing of the past too.

Looking back, I was very distressed at the time to have ended up with the PM and wished I'd never had the ablation. However, now when I remember how awful I felt with the SVT, I'm glad I no longer have to deal with it. Naturally, that's only my experience, and someone else's might be different.

Hope that helps.

to Sara Tb thanks re Pm +AV node ablation

by upstart - 2010-09-21 10:09:50

Dear Sara TB: this is the kind of personal info I was wanting. Thank you. i am still considering this surgery...so your comments are most appreciated.

I have had 2 UNNSUCCESSFUL ABLATIONS by kryo method...freezing the unwanted electrical tissue near the AV node. . I have tried over 3 meds and now the final med is a low dose anti arrythmic which seems to be helping with the duration of the episodes but not the rate of occurance. I still have SVT but they don't appear to be as long as before taking this med...had one for 17 hours and no access to an ER. horrible.

The surgeon says he will now go in and "burn" the abberant electrical tissue that causes the short circuit. It is aggressive and unforgiving, this third time is it for me. If he touches the AV node (the aberrant tissue is very, very close to the normal conductive AV tissue node) , as you say, heart block is the reult and I get an automatic PM. So I have a 1 in 10 chance of getting heart block, as you described in your experience. I think those odds are worrth it given the crappo quality of my life with SVT. I am 62 now and can't see going thru this on and on. My wonderful surgeeon will do his best to 'zap" the unwanted electrical tissue but if he damages the AV node, its a pacemaker for me for life.

Please tell me more about what happend for you and your quality of life compared to having many SVT episodes.

most grateful for your personal real experience. thanks
upstart

happy to be a help!

by SaraTB - 2010-09-22 12:09:20

Upstart, I'm not really sure what more I can tell you - I don't think my SVT was as crippling as yours sounds: I never had to be hospitalised - the SVT events didn't usually last long. Just felt awful. Was on Digoxin (which left me tired, because I generally have a low blood pressure anyway, and that made it lower). Tried adding in Toprol, which I couldn't tolerate, so switched to calcium channel blockers. It helped limit it a bit, but I still felt the SVT and the side effects of the meds just left me exhausted all the time. The ablation seemed like a simple solution. I wasn't told how high the risk of AV node damage was - I was given odds of 1 in 1000, which seemed reasonable. Only reading more about it later did I find it was much shorter odds!
At the time, knowing nothing about pacemakers, I might have said 'no' if told 1 in 10, but honestly, looking back now, I'm OK with it: as I said, the SVT went away and I take no meds, thus no side-effects. I'm on my second PM now - it took about 6 months to get the first one set up to my satisfaction. I don't see a cardiologist any more - just my EP for pacemaker monitoring.
I have found the shortness of breath when climbing stairs or walking uphill frustrating, but it's preferable to the SVT.

I haven't found the PM has held me back in any other way - I'm able to do everything I used to do, and I do feel I've got my life back. Most days I don't think about my PM at all. I travel frequently (I'm English, living in the US, and try and get home every year) and have no worries in that connection.

It must be a very hard decision to make, knowing the possible outcome, and I can't make that decision for you, but I think if you read around this site, you'll be reassured that most people continue to live normal lives after they get their PM, and I hope that's encouraging to you. Feel free to keep posting questions here: the Club is a very supportive place.

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