worried and can't get answers

I had a checkup yesterday and my medicine (sotalol) is no longer working. I have tachy-brady pretty much constant. My heart will beat fast, long pause and then beat slow and repeat over and over all day. The pacemaker is not coming in on the pauses fast enough because heart is sending out enough of a signal that it doesn’t step in. The doctor said that next step is trying a last medicine ( I have tried everything else) Multaq or another ablation. This time he would completely ablate the sinus node and I would be pacer dependent. Well I would do that if it wasn’t for the fact that my diaphram nerve sits on my heart and it is risky. Already had one ablation and it paralyzed that nerve for about a year. I guess what I really want to know is what will happen if I do nothing. How big a risk long term is this? When I ask my doctor he says he does not have a crystal ball. Well I need a little more info to make a decision here. Any help???

5 Comments

thanks cabg patch

by nat36 - 2010-11-05 07:11:48

I don't have afib or atleast not that I know of just atrial tach. Do you think the risk of stroke is still there since no afib? He has not mentioned stroke risk. I was more concerned with heart muscle wear.

thank you

by nat36 - 2010-11-05 08:11:25

Yes it is very difficult because there are no good options and I can't even get my doctor to give me an educated guess. It would be nice to know which risk is greater. I have been struggling all day with this and my husband is a numbers guys and he wants percentages of each risk but I can't give him that:) My doctor tends to sugar coat everything but sometimes a straight answer would be nice or atleast a best guess. His recommendation was the surgery because of my symptoms but had told my husband previously the ablation was out of the question because it was too risky. Why did he change his mind??? Does he think I'm that much worse? He wanted to try this last medicine first. Honestly I am exhausted on switching meds. It's scary and for what? If all the others haven't worked long term for me then the chances of this one working is so slim. When I asked my doctor the damage this was doing to my heart he just said well the heart is resilent. Ok that is not an answer!
Thank you so much for your imput. You don't know how much it means at times like these!

Been There Done That

by SMITTY - 2010-11-05 10:11:38


Hello Nat,

I have been where you are, but without the ablation. I was not a candidate for that for some reason. I never asked why because I did not want one anyway. But I would have skip beats, in strings of 2 to 5 and PVC/PAC (I can't tell one from the other) for 2+ years. I think I tried every medicine known to my doctor and the best I can say for all of them is some made it less worse than others, but they all made matters much worse. My heart rhythm was so irregular the Dr could not get meaningful results from an echo or MUGA.

Then one day my doctor told me I should get my affairs in order, or something to that effect. I decided he had given up and I got P'd O. I contacted Medtronic and asked if I could have a representative make some changes in my pacemaker settings. I had already asked the people at the PM Clinic but in reality their hands were tied unless the Dr ordered the changes and he wasn't interested.

Now I had what I thought were logical reasons to want the changes, but that is another long story

Anyway I saw the rep and got her to increase the low setting from 70 to 80 and the upper setting from 110 to 120 and start the rate response. That was in July 2009. At the time walking 200' was a real chore because of irregular heart beat, which caused chest pain and shortness of breath. I'm now convinced the only reason I'm able to send you this message is because I got those changes made. Now, it didn't completely stop the skip beats, PVC/PAC but it reduced them by at least 75 to 80%. It took about 3 minutes for me to realize what a difference it made and I'm now into my 16th month and things still are working fine.

I should add the pacemaker I had at the time was 9 years old and the battery died a couple of months after I had the changes made. I got a newer model with the same settings and the good results have continued.

Now I have no idea if this may or may not help you but if it sounds like something you may consider talking to your Dr about, there are a couple of other things I want to mention.

I have a long history of heart disease, first diagnosed in 1982 when I had a heart attack followed by bypass surgery. The other is I was 80 years old when I had the changes in the settings made. Whether either of those had any bearing on my situation, or my results, I have no idea. All I know is I thought I could see the end of my road. so I had nothing to lose. I no longer think I can see the end of my road.

I wish you the best,

Smitty

thank you Smitty

by nat36 - 2010-11-05 11:11:52

I don't know what I would do without this club! :) I get so much support and am so thankful for you all! Smitty my doctor already did everything you mentioned. We turned up the rate response and changed my lower setting to 80 about five months ago which did help to some degree but it seemed like my heart just adjusted to that change and went a little higher to act up:) Since then I was having a lot of trouble sleeping so they set the night time rate to 60 yesterday and they were supposed to leave the other at 80 but I guess the tech got confused and lowered it back down to 70! Today has been awful!! I did not realize how much the 80 helped until now!!! So they need to fix that back!!:)
I feel like I have a pretty good doctor that is doing all he can. He told me that he has never seen a case like this as bad as mine! My husband wants to get a second opinion but this is our third heart doctor so I kind of feel like weve done that already! At some point we just have to accept things I guess.
I do thank God for all of you guys for the constant support and encouragement. On bad days like this its a port in the storm!

Go to Mayo clinic

by grandpageo7 - 2010-11-06 01:11:45

My Dr wanted to do a AV node ablation and was told that was my only option. My family was pressuring me to have it done. On the table getting ready to head to the ablation room. I stopped them. I did agree to a pacemaker but no AV node ablation. I had Tachy Brady from the heart medicine I take for AFIB. 3 cardio-conversions and every rate control medicine out their and nothing works. I went to Mayo and was told I made the right decision not to get the AV node ablation. Mayo could not do the pulmonary ablation on me because I had 2 blood clots on my pacer lead. The blood clots are gone and I am headed back after Thanksgiving.

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