Terrible Pain 1 year post op from ICD implant

• By mrsaa
• Posted October 21, 2009 at 5:21 pm
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totally in tune with you!!! been 18 months since my SCA and getting ICD and still get real sharp pains. I wear my bra strap at "half mast" as I can't stand the pain of it touching the device!! Seat belts drive me nuts and one day I am sure a Policeman will stop me as I constantly move it about as it hurts. I do take pregaballin, prescribed by cardilogist and it does numb the pain somewhat but not all together. Mine sticks out too and I'm sure it sometimes moves around. Cardio thinks I'm nuts I think but i do feel it in different places some days. it does travel sometimes to under my arm pit, gets pretty tricky shaving under there at times !!
but i think we have to put up with it, we are still alive, in my case only just after 14 mins down and 7 days on LS.
My worry is when I have to get a new one when batteries start to run out!!! OUCH.
Hang in there , ask for some meds and talk to your cardiologist and keep positive
god bless

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• By Imcre8ive
• Posted October 21, 2009 at 7:27 pm
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Thanks. I'm going to have them move mine. You can almost see the gray color through the skin. Just got back from a different specialist, he manages my blood and he highly recommends me seeing another doctor and getting it moved.

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• By hipmama42
• Posted October 22, 2009 at 7:51 am
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I'm so sorry to hear about your horrible struggles with the ICD, especially the unrelenting pain and the toll it's taken on your ability to live a normal, enjoyable life.

My cardio is already "implanting" the seed in my head so that I'll be ready if and when the time comes that he'll push for the ICD in a few months. It sounds like he wants to do it no matter what, even if my meds are working and my EF is up to where it needs to be, with no rhythm problems and my bp and heart rate well controlled. He told me last Friday at my first post-hosp. follow up appt. that he had read some studies indicating that people with my numbers do better in the long run with an ICD than those who just take meds and presumably alter their lifestyle with exercise and a heart-healthy diet, while managing to controll their stress levels.

If it means such a diminished quality of life and being in constant pain as you are, I have to question how much "peace of mind" the ICD is able to provide, and how much stress the constant aggravation of this device is causing and may even be contributing to worse heart problems! When I first read a pamphlet in the hospital about ICD's, before my docs had even brought it up, I kind of shuddered in horror - it looked so invasive and like something that my body would automatically reject as foreign and dangerous. I guess I am surprised that more people aren't bothered by this foreign device being lodged in their chest wall. I already have severe fibromyalgia, and even everyday aches and pains are amplified tremendously by my central nervous system. I am on Cymbalta for nerve pain, and forbidden to take arthritis meds (the nsaids) because they might have caused my dilated ICM. I also have a poor immune system, and I'm allergic to nearly everything.
I am dreading the implanting of an ICD, even though intellectually I am well aware of its life-saving potential.

I want to thank you for being honest and up front about what is happening with your ICD's and how difficult it can be to get insurance to pay for repositioning and/or a new device - along with having a doctor who is less than emotionally sympathetic and supportive.

I told my pulmonologist, whom I have been with for 20 years, that I was likely going to have to have an ICD implanted, and he just shook his head and said, "oh, that's too bad...." It seems that many docs who aren't cardios think that meds alone can completely reverse ICM and CHF in women with BBB like I have. I wish that were the case, because the idea of the ICM terrifies me. I have so much pain already in every muscle and joint in my body that I don't know if I'll be able to withstand what you are going through. I can picture me having a screaming, raging bitch fest with my cardio and demanding that he cut it out right then and there, and give me morphine NOW damn it!
I think you have shown enormous courage, patience, and resilience given the chronic pain you are in and how it impedes your ability to live a more or less normal life as it was pre-ICD.

I am scared of this device, and I see what an emotional decision it is going to be. I won't know for a few months yet...after my next echo the doc will have a better idea of whether or not to recommend that I get one. I can tell by his attitude already that he believes that everyone should have one if they have ever had any rhythm abnormalities whatsoever. I had some V-tach only once during my hosp. stay, while asleep at night, for only about 7 seconds, and never knew a thing about it until the next day....but then they said that this sometimes happens to everyone, even those with no past heart issues, and it may turn out that it was a fluke and will not happen again. Knock on wood, the Coreg seems to be keeping the arrythmias at bay, as well as lowering BP and heart rate. Much as I complain about its side effects, I'm happy to take it forever if it would keep me from having to get an ICD.

That is just how I am feeling today. I vascillate back and forth, as so many of you have, wondering if I will need one and if so, if I will be willing to accept having to go through with it. I am on Medicaid so the procedure would be paid for....I am sure that my cardio noted that, so I can't use that as an excuse...
It seems that for some folks it turns out to be a wonderful thing, something that is reassuring and helps them to relax and be able to enjoy their lives without fretting constantly that they are going to go into v-fib while miles away from an ER or a defibrillator. Other people have such daily pain and loss of mobility in the arm and shoulder area that it's all they can think about every single day, and the ICD completely rules, and has nearly destroyed, their quality of life. And then once it is implanted, there are still lots of worries about it malfunctioning and needing to be serviced or permanently replaced.
And yet the docs who do the surgeries seem so blase about it all, as if it were no big deal to have that hard, sharp foreign shocking device ready to go off at any time. It's like they really only see the science behind the procedure, and not how a person's quality of life and sense of well-being is affected by this device.

I think they ALL need to have to have one implanted for a few months themselves so that they can really understand what it's like for their patients, and make sure that they have a few shocks just for good measure and to keep them on their toes! :)

I hope that Lucy can be repositioned soon and that you'll get some relief from this living nightmare!

And thank you for keeping us all posted.

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• By jencava
• Posted October 22, 2009 at 9:10 am
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I am so sorry to hear what you are going through. My ICD sticks out about an inch and the doctor has expressed concern about the skin becoming too thin over it. you can see the grayish/green color underneath it as well. I get more of a feeling as though someone is poking me with a knife and then I get other pains that really scare me because I don't know if they are from the implant or my heart if that makes sense.

Hang in there.

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• By Jamesrochelle
• Posted October 22, 2009 at 11:45 pm
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My ICD sits at an angle the side nearest my armpit sticks out about an inch and you can easily see the gray color and the edge of the machine. I was told by the cardiologist that the "pocket" that was made for the ICD to rest in "ripped" on the side nearest my arm and I would have to live with it and the pain would subside as my body healed around the machine. I also had the lead wires that are near the top of my machine shift and start to poke through my skin this also as I was told is something that I will have to live with. My discomfort feels like a constant bee sting but it is all worth the peace of mind that I get when I feel my pacemaker "thump" or think of my SCA knowing that the next time my machine will shock and keep me here to care for my children. I have been pulled over twice because my seat belt is always worn under my arm because of the irritation it causes both times the policemen were very understandng and I did not get a ticket but I know this may not always be the case. I hope everything becomes more tolerable for you. Jamie

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