Amazing news.....SA node recovery

Hi All
Firstly, I would like to thank Inga, Don & Ian MC for helping me & explaining about the SA node & how it can recover after ablation. I would like to share my latest news with everyone else, in case anyone else has experienced a similar occurance or in case it helps anyone in the future.

On Thursday last week I found out that my SA (sinus node) is working again. I had 2 ablations near it in 2010 & 2011, for atrial tachycardia, & my SA node got damaged. I ended up with bradycardia, sick sinus syndrome & chronotropic incompetence......so I got my PM 3 months later in September 2011. Last October I had an AV node ablation for an accelerated junctional rhythm. In February this year I had an AV optimisation as I had been experiencing symptoms post AV node ablation. They had to alter my AV delay settings.

This is what has been happening lately:

For 6 weeks after my AV optimisation I felt great. Then I took up my walking for exercise again. My EP had said I could back in December, but the weather has been freezing over here in the UK, so I've only really been able to get back into it recently.

Over the last 2-3 weeks, while out doing my walks, I had been getting bad chest pain when I tried to walk fast. If I slowed down the pain got less intense. My coronary arteries are fine, been checked in 2000 & again last year.

So I contacted the Head of Pacing who has been looking after me & my case since last August. She spoke to my EP & they decided to do a treadmill test while I was also connected to the PM computer, to see what is going on with exertion. I had the test last Thursday.

I did get chest pain during the test but my ECG was fine. The Head of Pacing then thought maybe I was reaching my upper limit of 130 & going into block. They let me get to 130 & I did go into block....weirdest sensation I've ever felt & I've definately not felt anything like that before. They stopped the test. The Head of Pacing said this may not the cause of my problem as I got the chest pain before I reached 130. But just in case it helps, she has increased my upper limit to 140.

Now it gets interesting!

I asked if maybe my rate response was too slow for fast walking. The Head of Pacing then said "you're not actually using your rate response, your SA node is working!" I was stunned!!

She said on exertion my own SA node was doing all the work because the ECG on the treadmill test showed the atrial rhythm was all sensed. None was paced. She even showed me my own P waves. At rest it is all paced because my SA node at rest works at 50 but my lower limit is 70.

I was so stunned because it is almost 2-3 years since I had those 2 ablations. I really never expected my SA node to recover, although I know it can. The Head of Pacing said that when you have ablations near the SA node, it can get stunned but can eventually recover.

They have left my RR on as a "back-up". I'm going for another PM check in 3 weeks & they are going to see if my %atrial pacing starts to drop as my SA node does more work on exertion. At the moment it is still 100%.

The other thought they've had is that maybe the chest pain is from a recurrance of microvascular angina. In 2000 I had myocarditis & the inflammation set off this problem with the small blood vessels in my heart going into spasm. I had it from 2000-2005. Then it all went away & my stress echo returned to normal.

I'm just so excited that my SA node is working again!!

UPDATE: Since they increased my upper rate to 140, I no longer get the chest pain while walking! I've been out for several of my walks since Thursday & now seem to be much better doing the walking. Inga, Don & Ian MC don't know that bit of news yet! Isn't that news amazing! So maybe the chest pain was due to the upper limit being too low at 130.

My plan now is to do as much walking as I can in the next 3 weeks, so when they check my %atrial pacing again in 3 weeks it might (hopefully) be decreasing as my SA node takes over more of the work on exertion.

As my RR (rate response) is still on as a "back up", could it interfere with my own SA node's function & "compete" against it? If so, what symptoms would I experience? I know others on here have had problems when the RR has been on when they did not in fact need it.

It just goes to show that anything can happen over time. I never thought my SA node would recover, especially after 2 years.
I learn more & more about my heart & PM's all the time.

Best wishes
Janey

4 Comments

Great News

by ebfox - 2013-04-14 08:04:22

Glad to hear it Janey. My own SN recovered from Thorascopic Maze surgery- I came off the table with a junctional rhythm of 41; got a PM 5 days later. Fourteen days later I went to the PM tech because my heart was racing (I thought something was wrong with the PM). but when the tech hooked up she said "you are in sinus rhythm and my reaction was the same as yours. After 10 months my PM was removed-

Exercise-wise, are you doing anything other than walking?

BTW, hooking you up on the treadmill was a great idea- not every EP would do that. Did you consider asking them to lower your minimum rate? If the heart is stable and doing it's thing right, why not see if it still supports you at rest?

Your story provides great encouragement regarding the heart's ability to re-establish a working ANS. That is something you don't hear a lot about.

EB

Good story...

by donr - 2013-04-14 10:04:09

...Janey. Glad all is going well for you. Also that you posted it fore the world to see - there may well be some folks who can be helped by your tale. You cannot be alone in this world. based on all the posts I read.

Congrats on growing back a functioning SA Node. Npow let's hope that it behaves itself!

Don

Hi Janey

by IAN MC - 2013-04-15 05:04:59

I'm very interested in your tale. I have Sick Sinus and , although my PM is only pacing 8 % of the time it seems that I went for over 3 weeks in March when it wasn't pacing at all. I wonder if, when the sinus node does start to get better, is this how it starts to show up i.e. relatively long periods of normality ??? ... interesting !

Your story is great but raises a few questions :-

- Why is your lower limit set at 70 bpm but your normal resting rate is 50 ? If your sinus node is OK why not alter the lower setting to 50 ?

- I, too, would like to know the answer to your question..how exactly do you feel when RR competes with your sinus node ?

- I'm not sure why they are leaving RR on as " back-up" , If they turned it off now would that not answer some of their questions.? Having it turned off wouldn't kill you ( but could at worst make you feel uncomfortable when you exercise)

Also my understanding is that if you have RR switched off, the upper limit becomes fairly irrelevant.

I realise that they are only part the way through the process and your check up in 3 weeks should be interesting...let us know the outcome

Ian

Lower rate

by Janey L - 2013-04-15 12:04:06

Hi all
Thank you for your replies.

Well, the lower rate is an interesting point. Before I ever had any arrythmias, my normal resting HR was around 75-80. That was normal for me.

When I first got my PM they set my lower rate at 60 but I felt terrible with it that low. I had little energy, felt exhausted....it did not feel good at 60.

So they increased it to 75, so that it was more like my resting HR was before....I felt MUCH better.

When I had my AV optimisation in February, they lowered it to 70. That feels ok.

The dilema now is....I totally agree it should now be lowered more to give my own SA node a chance to do more pacing at rest. But my SA node at rest only works at around 50 (checked in last week's PM check). I felt terrible with it at 60 so it would be even worse at 50.

However, I'm quite willing to give it a go....they can always change it back if it turns out to be a lot worse.

The Head of Pacing did mention something last week about asking my EP about lowering it, but I wasn't too sure what she was talking about lowering (?lower rate) & I was SO excited about my SA node working again that I didn't get to ask her more!!

My other question for my EP surely is "should they turn the RR off?" I think I would like to try it without & see how it goes...again, they can always turn it back on if it is worse without.

Isn't it amazing how they can turn things on & off on our PM & it can make such a big difference in how we function & feel?

ebfox & Ian.....so pleased for both of you that you too had SA node recovery.

ebfox.....the only exercise I'm doing is walking at the moment. I've been out of action for so long (over a year)
that my EP felt walking was a good start. I'd love to go swimming BUT I can't swim!! At age 50 I don't fancy starting to learn now. I did give it a go MANY years ago when I was at school (& that really was many years ago!) but I just never got the hang of it. I kept on sinking!

I'll keep you posted on this current situation, it's all fascinating to me.

Best wishes
Janey

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