Lynne's Posts

So some new updates to this long 6 month nightmare! I saw the cardiovascular surgeon on April 2,2026 to try and find out what is causing all the burning, stinging, and throbbing pain around the pacemaker area as well as now a full frozen shoulder. It turns out the frozen shoulder is from the pacemaker area and he thinks it might be from a mild infection in the pocket. They were going to do a pocket swab and pocket revision on May 6th which just past, but on May 5th they called to say the team had re-reviewed my chart and decided to do the surgery in the OR rather than the cath lab on May 15th. The nurse didn't know why. I'm starting to think I want this pacemaker out of me and a leadless one put in. Everything has a sequence of events that needs to be done. They need to find first what is causing this increased pain and dysfunction, is there a minor infection floating around and then decide the best way to correct it. Even if it is a minor infection the whole thing needs to come out and go onto the other side, but that also poses a problem. If anyone has followed my story they will know I had my bicuspid valve replaced in 2015 with the pectoral muscle detached from the the sternum bunching up around the armpit. It caused a compromised upper body and I wasn't pleased about it, but the following year I accidently gave myself a lung hernia. This required a hernia patch to be placed inside the chest cavity. Since the pectoral muscle was still bunched up I asked them to reattach the muscle to the sternum, which they did but it left the muscle with a split between the sections. At least out of some bad came some good too. Now this muscle likes to cramp like a Charlie horse cramp which as you can imagine can be very painful. I can't stretch it out like a normal cramp so I use the back of my knuckles to push and massage out the cramp. So this area is a "no go area" as I can push on the pacemaker to push on the muscle below. So this leaves two options - either the abdomen or a leadless one. I'm not keen on the abdomen at all and I don't know yet if I'm a candidate for a leadless one. They won't put it back in the left side so basically the chest is off limits now. I'll ask on May 15 about a leadless one. Besides having an increase in palpitations that are very disconcerting and uncomfortable. They say they are not dangerous but the increasing amount affects my quality of life for sure. I feel from a patients perspective that it is all connected to the pacemaker issues and I hope they get it figured because this is one unhappy heart at the moment!😢

Well I was just thinking of giving an update and ask maybe if any others have had some pacemaker problems. It will be coming up six months now and I'm starting a second part of cardiac rehab for 4 months. I did 1 month with the facility I transferred to after my surgery for 11 days. It was their outpatient falls prevention program. I was not your typical senior person that goes into this program but what they wanted do with me was improve my lower leg strength by doing an intensive 4 weeks program. They worked me hard for sure, and at the end of my time the Pt/ OT said I don't have any more challenging tasks for you to do. I was doing balance things I thought I would never be able to do, with eyes closed too! So the next rehab will be your traditional rehab for most centres that offer these types of programs after heart surgery. Lots of walking, cardio machines etc. Now, part of my problem is dealing with the pacemaker that was implanted on Sept 19,2025. Since then the area around the PM along the chest to the armpit and down the underside to my elbow. I have been having wicked pain that has progressively gotten worse since Oct 25,2025. I noticed when I was walking and a normal arm swing the arm started to hurt causing me to stop swinging it and rest it in my coat pocket. It sort of helped then on Nov 12 the pain changed again to involve the arm all the time and not just swinging when walking but even at rest, like now. I was having my first Device clinic as it is called on Nov 27, 2025 and went to tell the Dr. what was happening. This doctor must have been having one hell of a bad day or this was his normal demeanour. He opened the door, looked at me never said a word, never blink to knowledge me or nod, nothing. Someone in the hall spoke to him and he said something to the EP tech and then walk over to the computer and sat. I was sitting on the exam table at this time. Even though the Ep Tech versified who I was I never actually got to see the surgeon well enough to know what he looked like from ICU. It was always the fellows and nurses doing everything. He was behind and off to my left during the surgery and never saw him without a cap and mask. I actually thought the guy was taller. So when he came into the room that day I wasn't sure if he was the doctor. He said never said who he was to me but I kinda knew. It was a good thing I asked the EP tech all the questions and he answered to the best of his knowledge but said "we should ask these 3 questions on my list to the doctor". He explained more than the doctor did to understanding what I was experiencing, otherwise I would have come out there with no understanding. Eventually the doctor turned and said in a very gruff voice "how are you". No pleasantries what so ever. I could see the Ep tech look at me and I'm thinking what the hell is going on here. So I started to say " I've been having pain" and that was it. I never got the question out when he interjects " saying everyone has pain, some more than others and for longer". Good but it wasn't my question to him. Then he says " show me the incision" equal as gruff. Which was fine. The EP tech he was 100% wonderful compared the asshole of a doctor. He actually took care and politely asked if he could check the incision and listened to the heart beats and felt for the arrhythmias. The doctor did none of this himself. So the doctor then says "any other questions" and I said yes " why if I'm on Bisoprolol " but that's again far as I got. He just said " speak to your cardiologist". Now the EP and I are seriously making eye contact and wondering what is going on here. He tried to say something and he was cut off, and I thought to myself "that's it, I'm done with this doctor. The Ep went to tell him about the arrhythmia I'm having but he didn't want to hear about and I mouthed to the EP tech"forget about it". This doctor had his back to me again during all these questions. By this time I turned my head and looked out the window and never said another word. The doctor stood said"come back in six months" and went out the door. No good bye, nothing. I may be small in stature but nobody f's with me like that. The Ep tech stayed behind and we talked for another five- ten minutes. He doesn't know what happened that day. Needless to say I phoned and told them exactly just took place and told them, I will not see that person again. He doesn't respect the title of doctor after that espisode and I told them that. They were very surprised because they said "he is usually so nice to everyone". I said"not today people". It is in my chart to not see this person again. When I came out of the office and to the waiting room where my sister was, it jam packed with people. The same person that I was to book my appointment with in 6 months had just come out to everyone in the waiting room and said they had some delays and they were a bit backed up. That was an understatement! So something seriously happened that day with this doctor and he wasn't happy so I think he took it out on the patients next in line and I got it since it was an early appointment that day. The clinic nurse who I called to complain about the episode said to call back if there is a problem. So today I made that call. I have been having progressive increase in pain and disfunction with the left shoulder and arm. It has become an on/off again frozen shoulder but goes down into the bicep muscle in my arm. It has been causing me to have muscle weakness, sharp shooting pains in different areas in the arm and shoulder. Some almost feel like electric shocks. I'm having a great deal of difficulty with my activities of daily living, coats hurt to put on, seatbelts are a nightmare if I have to do it more than once. I cannot sleep on my left side since September which is my preferred sleeping side which has caused very fractured and shorter sleep. Very little deep sleep because pain keeps me awake. What my PT and OT therapists are thinking is that the sutures to hold this in place has been placed wrong on the muscles in the chest and is pulling on the muscles and tendons so it is restricting the extension of my arm out to the side. I'm beginning to understand more how this could have happened if he didn't have the arm fully extended when he put in the suture which won't allow it to be extended now, and every time I do the pain gets worse. To add to that I also started to have increases in palpitations, a lot of them. This could be because of the increase in pain and lack of sleep. My Fitbit also picked up an A fib arrhythmia which was picked up during the episode. Usually Fitbit gives the reading after it has been picked up. So because I was having sweating,nausea, clamy, not feeling well and a bit lightheaded I took my BP which was all over the map so I next did a ECG on Fitbit and it picked it up as it was happening. I also happened to have a holster monitor on because I saw my cardiologist on Jan 14 for my new baseline echocardiogram going forward. I mentioned about the palpitations increasing so we put one on for 7 days. The results showed no A fib but there were two areas that had what they called a couplet and numerous PAC's and PVC's. Apparently it is the couplets that are a concern for A fib. I also learned that there are four ways to put in the wires to heart muscle and the one that is most commonly used and the easiest for the surgeon or even inexperienced doctors can put this in: the atrial right appendage, right atrial free lateral wall, interatrial septum low, interatrial septum high, interatrial septum, Bachman Bundle, right atrial multisite, bilateral coronary sinus + right atrial. I came across this paper on it published June 18, 2024, Frontiers in cardiovascular medicine, Pacemaker-induced atrial fibrillation reconsidered- associations with different pacing sites and approaches. These were never mentioned when they tell you about pacemakers. The only thing was how they put them in, why they put them in and other precautions. No mentions about the placement in your future. The article gives the pros and cons about each placement area. I would have wanted to know more about the Bachman Bundle area because this one may be more challenging to do but gives no A fib future problems. I would have done differently if I had know. I will ask them this when I seen someone as to why these areas are never discussed. My question to anyone that has a pacemaker did you have problems with shoulder pain and muscle problems in the bicep muscle? I have a small tear in this shoulder and early on we were thinking of doing and injection but as this progressed I began to think this is not the tears causing this but the PM. I said the to my FD today that I think we should wait on the injection till the PM is sorted out because these shots do not always work and I didn't want to waste it, when it could be need later down the road. He agreed with as well. I have a fair amount of medical knowledge from working at Holland Bloorview Kid's Rehabilitation Hospital as their medical intake coordinator so I needed to know my medical terminology but pacemakers are out of my league but I'm learning to understand them better. This little warrior is wearing out quickly and I hope soon they figure it out because it is destroying my quality of life and getting in the way of recovery. So that's the update till I see someone hopefully in a few weeks. It sounds like the clinic nurse is having me see a surgeon so it might a bit longer. So keep all your love coming ❤️💪 and I hope it is a simple fix. Lynne