After a few years of my initial implant of my ICD, I started to have pain in my incision. The pain started out as mild and only occur occasionally. After my first replacement in 2004, the pain started to get more moderate and it occur more frequently but I did not need anything for it. I wanted to know what may be the cause of this pain even through it didn’t bother me that much, so I asked my primary care doctor and was told this is nerve pain and post side effects from surgery.
After my second replacement in 2010, the pain got worse and much more frequent. In 2012, I had asked my cardiologist at the time and was told the same thing as my primary care doctor had said that it was nerve pain and post side effects from surgery. By the end of 2012 and the beginning of 2013, I started needing to put ice on the incision and sometimes had to take Tylenol for it. In 2014, when I began seeing my current ep, I asked if something could be done about the pain, I was giving some patches but that only helped when it was on and pain will return when I took it off. I complained about the pain when I was at my next visit, I was given nerve pain medicine. The nerve pain medicine did help with the pain but it made me sleepy so I could only take it at night time and during the day the pain would still bother me. At times, the pain was so bad it felt like my head was going to explode. My ep then suggested I try acupuncture. I tried acupuncture and it worked at first that I was pain free and the acupuncture doctor said it was inflammation and it would take a while for the pain to go away and I continue going to acupuncture for about 5 months but then the pain return to its original state after getting acupuncture for about 5 months, so I stopped going because my pain was not getting any better.
I then went to a pain management doctor to see if anything else could be done for the pain, I was told by this doctor that it was nerve pain and when nerves grow back it grows back abnormally and there is no way for it to return to its original state before it was cut for surgery, and there is only temporary relief from the pain. I complain about the pain again at my next visit with my ep. At this time, I found out I had a small problem with one of my leads in which it had higher threshold pacing causing it to use more energy to detect my heart. My ep then said a pocket revision and moving my ICD to new spot may help with my pain because it may be that the leads have a lot of scar tissue surrounding it since it had been inside me for 16.5 years or that my ICD has been in the same pocket and same spot for so long there may be a lot of scar tissue build up causing my pain. I was given the choice whether to have the leads extracted and ICD replaced and moved to new spot sooner or wait until replacement time.
Since my pain was pretty severe at this point and I was having pain almost everyday and it started to interrupt my sleep, I choose to have it done sooner. So in June 2016, I had lead extraction and my pocket revision for my ICD to new spot and replaced. My first 3 ICD was under my muscle, now my 4th ICD is submammary (underneath my breast tissue and on top of my muscle). I still get occasionally pain now and get pain before and during my menstrual cycle but the pain is nothing like it was before and I don’t need anything for it now, it is annoying and uncomfortable but nothing like it was before that caused me to complain so much.
This sounds very familiar. My wife was left with life-long neuropathic pain after a repeated implant – see https://arrhythmiastory.com/