site pain and keloids

Lately I feel I need to be trained as a Private Investigator to figure out what, if anything, to do about my current complication. I got my first PM 4 months ago and things have gone very well in terms of solving my cardiac issues. The problem is I still have pain at the PM site, can't sleep on my left side, seatbelt hurts, and lheavy lifting (e.g. moving furniture, lifting a suitcase, heavy yardwork) and some other activities cause increased pain/discomfort. My EP says my skin/tissue at the PM site is too thin, I may be experiencing skin erosion, and he thinks I should have my PM moved to under the muscle or into breast tissue. I had an appointment with my Primary Care physician to discuss it, and she mentioned I've developed a keloid at my PM scar. I Googled "keloid" and learned that's an overgrowth of scar tissue that can be extremely itchy and painful, including stinging pain that feels like pin pricks -- which is about 50% of the kind of pain I'm feeling. So now I'm wondering if that's the real cause of much of my pain, and if so, moving the PM won't do a thing to help. So I plan to make an appointment with my Dermatologist to discuss skin erosion and keloids, as I doubt my EP is the best person to talk with about that. And a General Surgeon (the one I see Tuesday to discuss moving the PM under the muscle or into breast tissue) may not be either. Am I being too impatient and should give it a year to see if healing and passage of time will lessen the pain? Unless, of course, I'm having skin erosion and the PM breaks through the skin. Anyone else had this problem and found a solution? Who has PMs under the muscle or in breast tissue, and if so, can you feel it? Do you have any pain? Was the recovery more difficult? Do you have activity limitations? Thanks for any light anyone can shed. Cathryn


7 Comments

Kelioid

by hooimom - 2007-05-12 04:05:44

Hi Cathryn,

I have a keloid at my PM site. I have had my PM for almost 10 months now (I just counted and cannot believe it has been that long). I don't have the itchiness and pain as frequently as I used to, though it can at times still occur.

When I lift, I do get very tender and can get so sore that I can barely take my shirt off over my head. Lifting my arm up can cause quite a bit of pain. My EP explained that since women will need mamograms, she places the PM higher up and over near the muscle. In my case, I lost some weight and now the thing rubs the muscle. I cannot avoid lifting altogether, but I have quit lifting unless it is necessary. I am not ready to have mine moved yet, but my doctor did say that was an option. I would ask about mamograms if you have it placed in breast tissue.

Michelle

keloid

by patpeter - 2007-05-12 06:05:44

Hi Cathryn, I have had my 2nd PM now for 5 months and I have a keloid also, I also still have pinching at the site that seems to increase with certain activity and my PM is very prominent since I am thin. My Cardiologist feels the pinching is from the 3 leads I now have , had to have one replaced with the second surgery and he didn't take the bad one out, so I'm just going to wait . My symptoms have improved with time but are not gone yet, I think you should definately see the dermatologist to see if you are having skin erosion and take it from there.....if you skin is OK I wouldn't jump to have it repositioned yet since it's only been 4 months. Of course if it is unbearable you may have no choice. I hope that helps some, take care and let us know what happens.
Pat

Keloid

by lady4law - 2007-05-12 10:05:38

Hi Cathryn:
I also developed a keloid shortly after my surgery coupled with intense itching. I hrecieved my implant about 8 months ago. The itching is not as severe as a few months ago, but the keloid has remained the same or perhaps even larger. I am wonder if it will cause a problem when I have my next manogram.
I agree with Michelle, ask if moving your PM could cause an issue relative to future manograms
Jean

a little more time

by bambi - 2007-05-13 08:05:32

Hi Cathryn,
I haven't had the problems you are having, but after reading the last post, I got nervous for you! In my own experience, my 1st pacemaker, which was actually smaller than the one I have now, bulged under my skin for 2 years, was very sensitive and painful for the entire time I had it. I had a new one put in in 2005, and even though it's larger, there was nowhere near the pain, and it was flat! The incision has been opened 2 more times since then, and after my leads were replaced, the pacemaker site has actually collapsed and is sunken in, and the pacer has slipped sideways, but it is not painful and it has not affected the function of the device. I do know that it can take up to a year for things to settle in. I'm really sorry you are going through such a rough time! Take care and be cautious! Happy Mother's Day!
Bambi

site pain and keloids

by luckyloo - 2007-05-13 08:05:34

dear cathryn,
below is a website that has all the bigwigs talking who implant ICD/pacers and pioneered the laser extraction of leads. they are webcasts you need to watch but they are so interesting and they go over lead/device erosion. there are some pretty graphic pictures so if you have a weak stomach turn your head:

www.clevelandclinicmeded.com/webcast/icd/intro1.asp
after entering the site, scroll down to the bottom and hit "begin activity". you then just have to give a tiny bit of info about yourself but after doing that you're in. it is VERY informative. i kind of wish i didn't know all the info given because some of it is scarey and things our EP's don't go over with us.

my ICD is not under the muscle but i do have a peripheral nerve stimulator that is. my PNS is exactly like the pacemaker but the leads go to my ulnar and median nerves because of RSD i developed in my hand. the post op pain from having my PNS under my muscle was EXCRUCIATING! i am not going to lie to you. i was begging the dr.'s to take it out. i wanted my PNS under my skin like my ICD but they said i didn't have enough fat...funny, the other side did. my PNS was put in by a plastic surgeon (hand surgeon) and pain panagement dr (anesthesiologist). they told me to give it time. it took a good 6 weeks for the pain to stop but it still flares up when i use my arm for a while. i am 4 months post op now. unless the dr.'s strongly feel this is lead erosions, i'd wait before i had it moved. i have talked to others with ICD's under the muscle and they all confirmed that the terrible pain is definately a "con" for having it under the muscle (post operatively). they all told me to give it time and they were right. so yes, recovery was much more difficult. there are other things that can happen with under muscle site...possible pneumothorax is one. i can feel my PNS. under the muscle is suppose to be more stable for movement though. my restrictions are the same as for an ICD. they worry more about the leads fracturing or coming loose.

my ICD under my skin did have some burning, itching ...like what you describe...it can hurt too if i sleep on it weird or if i use my arm a lot. i take motrin which helps because i think the tissues around it get inflamed from irritation. my scar is also a keloid type, even more so because it has been re-opened 3 times. your EP should be very familiar with lead erosion. i would discuss this with him/her and watch the webcasts so you are informed.

i hope some of this helps!

God bless,
luckyloo

yep that is all you need

by dettiger2003 - 2007-05-14 10:05:10

When I got my replacement pacer the dr cut out excess scar tissue and there is not even the slightest bump. My arm hurt for about 5 years off and on but I am telling you what i did not even need pain medication after the 2nd surgery so it is well worth the wait

an update

by CathrynB - 2007-05-16 08:05:49

hooimom, patpeter, lady4law, luckyloo, bambi and dettiger: thank you all so much for your responses. It's very helpful to get such informed experience from others! I met with the General Surgeon and like most of you seem to think, she thinks I should wait 2-3 more months before deciding whether to move my PM to a more comfortable location. She says the keloid itchiness and pin prick feeling may subside with time (as some of you suggest), that the scar could be removed and possibly solve the problem somewhat without moving the PM, and she does not see signs of skin erosion (my EP thought he did) so is not concerned that it will erode through the skin. So that's what I've decided to do -- wait and try to be patient. She also agreed with several of you who find you have more soreness when you use your left arm a lot, lift heavy things, etc so I'm going to lay off that kind of stuff as much as possible for a while and give it more time to heal. Luckyloo, I looked at the webcast you suggested, and while some of the pics were indeed yucky, I thought the information was mostly useful -- thank you. One other club member sent me some photos of an ICD that's placed under breast tissue, and I found that useful too. As usual, the people on this website have come through for someone with questions and concerns. Thanks a million to all of you for your friendship and expertise! Cathryn

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