Update

Just an update to those who commented/read my decreased EF post. A lot has happened in the last week! I am now scheduled for surgery this Thursday for a new generator and a lead extraction and replacement..eek! Long story short, my doc was fine with just monitoring the EF since he was not entirely confident that it is really decreased, could have just been the radiologist that read it, so he was having another one take a look at it. Battery still had 7 months left.

As I was leaving the appointment I happened to mention the way that my pacer 'paces' my arm when in a certain position (I had made a post about that a while back)...well that stopped him in his tracks. He wanted me to show him immediately, got the tech back in the room and then paged the rep from Medtronic to come down to check it out as well. None of them had ever seen it do that to the arm before but then believe it is pocket-stim..and since my pacer is functioning normally according to tests, they believe it is a hole in the casing of my 22 year old lead. So per them, 'urgent' surgery, they want it out as soon as possible.

Good news- he belives he can work on and possibly elimate my desynchronization problem with the new pacer and lead.

Bad news- I'm terrified of lead extraction!!! It has helped to read some of the past posts on this but still having a week long panic attack. Thankful for the valium they will give me the night before and day of surgery since I will be nauseous with nerves.

Any reassurance would be great. He states he will do a risk assessment when he gets in there, if it is easy to remove he will, if he thinks it's risky he will leave it as long as there is room for the new lead.

Sorry for the super long post.

6 Comments

good luck!

by Tracey_E - 2013-05-13 01:05:12

I really really like your doctor!! He is on the ball.

Extraction has come a LONG way in the last few years! The sheaths have gotten better, the number of experienced surgeons has exploded, and all of that means the risk has dropped considerably. Sounds like you are in really good hands!

When is your surgery? Will be praying for you.

and fyi, my leads are almost as old as yours. When one went bad 3 yrs ago, they just put a new one in on top of the old ones. They did a quick venogram before surgery to see how much room was in there so I knew going in there was a good chance we could leave the old ones alone.

Tracey

by Chels - 2013-05-13 01:05:54

My surgery is this Thursday, check in at 11am so I have plenty of time that morning to make myself sick with nervousness! Can't complain though, they got me into the schedule quick. He wants to take this one out if possible since I am fairly young he wants to save as much room as possible for future leads.

What is involved in a venogram? Were you awake or did they do it when you were already out?

venogram`

by Tracey_E - 2013-05-13 02:05:50

Couldn't have been easier, they just put dye in the iv line and looked at it with the xray machine in the cath lab.

Better living through chemicals... enjoy your valium!

leads

by Tracey_E - 2013-05-13 03:05:05

We took the opposite opinion with mine, removing was last choice because of my age. I don't think there are enough of us that the drs are going to agree the right way to go. We are the first generation pacing for most of our lifetimes so that makes us the guinea pigs. I want to put off extraction as long as possible so I don't need it twice. If I had an extraction now, I could need it again in my lifetime. My second choice if it didn't fit was going to be to put it in from the right side, third choice would have been extraction. BUT! My bad lead wasn't causing problems, it just didn't work anymore unless the power was cranked up so high it killed the battery.

I knew the lead was bad for 5 years before we did anything about it, and I had one battery change in that time. I decided, and my dr agreed, to hold off as long as possible adding the new lead. Replacements are no big deal so I went in to #3 making a choice to keep the bad lead, knowing this battery wasn't going to last long. Turns out, the lead got worse and it only lasted 2 years! At that point, replacing it wasn't optional. Oops, rambled!

Gentle 1

by Gentle1 - 2013-05-14 04:05:42

I am new to this site,(today) and will be totally pacemaker dependent as of next week. I am really frightened, so I understand your fears! You are not alone! We are here and care. Thank you for being open and sharing. People like you help the rest of us. I hope now, our support will be of some help to you. You have my prayers......

Good luck!

by TRL28 - 2013-05-16 12:05:37

I just wanted to say good luck with your surgery! I also was looking back through your posts and wanted to let you know my EF too decreased post pacemaker insertion from 60's to 40's within a couple months. This caused me concern even though it wasn't within the "heart failure" category, it was still decreased and being in my 20's, I wasn't comfortable with this and neither was my EP or Cardiologist. At that point we did some adjustments to my settings preventing my pacer from putting me into an artificial 2:1 block whenever I hit my max rate (which I do frequently). 2-3 weeks afterwards I had a mugga scan done and my EF went back up into the 60's... yay! They are thinking because of being unsynchronized so frequently, this is what may have caused my issues. If that didn't work, they where throwing in the idea of placing a 3rd lead also... thank the good lord it did :)

I also have some issues with being able to feeling my pacing elsewhere but it is mainly in my left breast tissue when I'm lying on that side or sitting a certain way -- when a change positions it will go away. Doc thinks its just because of my size and the placement of the pacer (axillary), because the leads test fine. Have your leads always tested okay? I will not need a replacement for a long time and definitely won't push the issue as long as I'm feeling good but just curious.

Again, Good Luck and make sure you keep us update!

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