SSS

I am one week post op of getting my PM.  My hospital (IU Health) has a patient portal where I can view test results,  summaries,  etc.  I had my first Appointment Monday at the Pacemaker clinic and with My Dr's Nurse practioner.   I was curious and went searching on the summary of Her Notes.  Farther down I saw Dr Kilra's notes of his diagnosis.... SSS.   Before my Pacemaker surgery the Attending Dr (i had went to the ER for slow hr that weekend) had diagnosed Me with Av block.   The SSS makes sense due to the last year ( May 2019 to present) of everything i have went through.    Passing out at niece's graduation,  episodes where I would laugh and then black out, more fainting spells (last one  at the grocery store),  and then lastly my low hr that would not climb back up to normal.  

I have still the "feeling" that it is still going to happen.   I lived in such fear that I was going to pass out that I've come to expect it.   When Dr Kilra said that I needed a pacemaker... i said ... "I just want my life back!" .  

Anyway...sorry for rambling on.   But it has been a blessing finding this website.   I have read through some posts and everyone's situations, comments and encouraging words have been a big help.  I know My Husband is eager for me to get back to "living" again.   It's been hard on Him as well.   

But other than learning to rely on my new little friend and not Fearing the "Before" ... things are getting better each day.   Incision healing and feeling better each day.  I can't believe how far I have come in just 1 week. 


4 Comments

SSS

by Sisterwash65 - 2020-10-30 22:35:30

I read your post and understand completely your fear of fainting again. I have the exact same PM you do and I had very simliar symptoms prior to getting the PM. It’s totally natural for you to worry but you’ve got to tell yourself “ you’re fixed now.” Time will help a lot. Also educate yourself as much as you can about pacemakers in general and your PM and condition specifically.

The PM is there to protect against that low heart rate. I’m a little confused about your diagnosis - Is it sick sinus syndrome or is it AV block ? Those are 2 locations in the heart so it seems it should be one or the other.

in a few weeks you should  be seeing your doctor and or device rep for some “ tweaking” of your PM. At that time, be sure and ask them for a copy of your Session Summary. It’s pretty technical but also has basic info on your low and high heart rate settings, impedance, projected battery life, etc.

Try to keep a positive outlook because you should be feeling much better and shouldn’t have to worry about fainting at all.

 

 

Ep dr probably right

by nhamblin - 2020-10-31 00:26:54

Sisterwash65. Thank you for your comment.   I would think that My EP Dr (Dr Kilra) has the right diagnosis.   The other was just a Regular Dr on Duty at the hospital that also saw my care.  

Also... i have already had an appointment with them and they explained about my Settings and battery life (as of right now...14 1/2 years 😉).  I will see My EP Dr in December and the device technician in January.   But i will definitely be asking for a session summary next time.   

SSS and AV block

by AgentX86 - 2020-10-31 00:32:19

It's a little unusual but it's certainly possible to have both. 

It sounds like the attending mistakenly called an AV block when it really was SSS.  If so, he should go back to med school.  An EKG should make either obvious.  There shouldn't be any confusion. Of course, if they're intermittent it's impossible to dianose unless they catch it at exactly the right time.  That's why Holter monitors, event monitors, and loop recorders  exist.

You can have both. Time to ask your EP some questions

by Gotrhythm - 2020-11-01 14:33:51

Just for the record, I have diagnosed SSS and AV block, type 1 or intermittent AV block. The AV block was only diagnosed in the last couple of years, but I suspect I've had it longer. But because it was intermittent, it was never caught by a Holter monitor test.

Interestingly, on two occasions when I had an EKG while having symptoms, I was told by a non-cardiologist that the EKG showed heart block. But the idea was pooh-poohed by the cardiologist I saw later--who only saw an EKG when I wasn't having symptoms. (By the time it happened for the second time I was far more savvy. I changed cardiologists.) 

So, although I have no idea how rare it might be, I know it's entirely possible to have both. 

The kind of AV block I have is not the only kind there is. Don't assume you know why there was a discrepancy. Just so you can be sure you understand your diagnosis, I suggest you ask your EP some direct questions.

A good EP will welcome your questions, and respect you more for asking them.

 

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