Old Pacemaker Scar on Stomach - feels like it’s tearing...

Hello everyone!

i'm really happy to have found this site. My name is Jordan, and I was born with Complex Congential Heart Disease. As such, I've had many pacemakers throughout my life - if I had to give a rough estimate, I had about 5 temporary ones (all in my stomach) before I was 3 years old. Upon turning 3 I was flown to Mott's Children's Hospital in Michigan and had a surgery known as the "Double Switch" performed on me. Honestly, I don't even truly understand it all myself!

when I was 11, I had another surgery to replace the battery of that pacemaker. When I turned 18, I had the surgery that defines my current life - my pacemaker in my stomach was removed (but not entirely, we'll get to that soon!) and the pacemaker that I use today was implanted into my left shoulder. The usual stuff for us here. That being said, they DID leave some of the old pacemaker wires in my stomach...

However, starting around the end of last year (I'm now 22, for a time estimate), I began to feel... complications all centered on the scar of my stomach where my pacemaker used to be. I can only describe it as a "tearing" pain - it started in the beginning of November and got increasingly unbearable, to the point where I was soon sitting in the passenger seat of my friend's car and couldn't take the pain (the pain is the greatest when I was sitting up straight). I made him pull over and I opened the car door and fell out and just keeled on the side of the road in pain. My dad came to pick me up and took me to urgent care, where I suffered another extreme attack. We then went to the ER and they did a CATscan and found... basically nothing. No scar tissue that they could see, no hernia, no wire inflammation as far as they could see. They told me to come back in about 2 weeks and report how I was feeling. I reported back in pain, but not nearly as much... for reasons I don't totally understand. The doctors then prescribed me pantoprozone, which I later would believe is simply a placebo. I took the medicine and - wow, I had never felt better in my life?? I was so happy! I went on with my life until mid January, when I tried working out and running on my treadmill for the first time since the pain had started. I woke up the next morning and the pain was back and in it's very ugly and brutal form... yet I was still taking the pantoprozone.

Fast forward to now, the pain has mostly gone away but will return if I squat, or basically do things that would excerise those exact muscles that the scar is near. I was supposed to go to a gastrologist this week to get us closer to what the answer could be, but the coronavirus has ruined those plans, and I'm done sitting around and not knowing what this pain could be, so I joined here.

if you have an idea of what could be going on with me or what my next step should TRULY be, please feel free to leave a comment and discuss things with me. I'm open to answer any questions.

3 Comments

Wow

by Tracey_E - 2020-03-15 10:17:59

You've had quite the journey! I tend to think it's not the pacer wires, since they've evaluated them and it's not scar tissue. GI is a good place to go next. Have they done cultures to rule out some type of infection? Good luck getting answer. I'm glad you found us. 

MY THOUGHTS

by Gemita - 2020-03-15 14:46:51

Hello Jordon,

You do have a long pacemaker history and I am sorry to hear about your pain symptoms.  It is a mystery.  I would perhaps want to know whether this could be nerve related or whether the retained pacemaker lead tips could possibly be pulling on stomach tissue as digestion/emptying occurs despite all your investigations being negative.    Perhaps any pulling in the area might only occur when you are in certain positions, or when stretching, bending, tensing your muscles.  I would particularly want to know whether permanent extraction of wires might solve the problem or whether adhesions are the likely cause of your symptoms.  Adhesions can cause obstructive symptoms (they have for me) which cannot always be diagnosed or fully appreciated during investigations.

Regarding your symptoms:  When you say an “old pacemaker scar on stomach - feels like it is tearing”, do you mean as in pulling sharply?  I had surgery lower end of my oesophagus/upper stomach some years ago and I can experience painful symptoms in the area (it starts with a sudden pull/tear sensation is how I would best describe it, which can radiate into my back and chest.  In fact any movement, like stretching or tensing of my stomach muscles can trigger it.  I have been seeing a neuro gastroenterologist who specialises in gut function and motility issues. I suggest you might ask for a referral if your problem is gut/nerve/adhesion related because they will have the expertise to help you

I hope you find an answer quickly for your specific problem.   

Responses

by OBraveOne - 2020-03-17 15:12:31

Hi everyone,

Thank you all for the replies! As promised, I have some responses.

@ Tracey_E - Correct, they've said repeatedly that it's not the scar tissue and that the wires are not irritated. I will indeed be going for GI next. What could be wrong with my GI that would lead to a pain like this, though...?

@ Gemita - everything you've said is correct, and yes, I mainly feel the pain when sitting up straight, almost to the point that my scar is being "pulled" at.

@ Nina38 - yes, the position is almost always a problem, but I know I can't just... go my whole life only lying down or standing up. I want to sit.

You know you're wired when...

You have a T-shirt that reads “Wired4Sound”.

Member Quotes

The experience of having a couple of lengths of wire fed into your heart muscle and an electronic 'box' tucked under the skin is not an insignificant event, but you will survive.