ICD Pain and Tenderness

SarcnTired
  • By SarcnTired · September 27, 2012 at 7:36 pm · 28 replies
  • In Medical procedures and treatments
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Hello everyone, I am a member on another Inspire sight for Sarcoidosis. Three different cardio electrophysiologists advised I was a high risk for sudden death due to a heart block caused by that disease. I had an ICD implanted in May 2012. It has been over 4 months and it is still extremely painful. I am not a big person and do not have a lot a fat in my chest wall, it sticks out quite noticeably. I can live with scar and the "third boob" but the tenderness and pain are a challenge. Bra straps, seat belts and skin tenderness are a daily "pain "I have seen old post on this site on this topic and wonder if anyone has had their ICD for some time and if this will get better. I almost want to tell my doctor to remove it but want to see my grandchildren grow up. I had no heart symptoms at all, the block was discovered with an EKG. Is this the norm for us women and why are these things so much bigger than pacemakers? My husband has a PM and you can hardly see it.

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28 replies    Reply

laurali

Give it another couple of months. I had my ICD generator replaced in early March, after 6 years. I had forgotten how sensitive the site is right after the procedure. Just the week, I realized that mine was no only tender or hurting at all. It seems to have "seated" itself again. Early on, I wrapped and taped a 3" gauze bandage around my bra strap on that side. That helped quite a lot. My new one (Named "Puff" in honor of the Year of the Dragon) is smaller than the original and seems to be healing faster. Hopefully your ICD will soon "seat" itself and you will no longer notice it at all. Hugs, laurali

2livelife (Inactive)
  • By 2livelife (Inactive)
  • Reply 3412891
  • September 28, 2012 at 7:36 am
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It does get better! I had my first one put in last year. I was told to get dressed and I could leave the hospital. My bra could not be put on. The nurse told me it was normal and she handed me a stack of gauze pads and said that if I pad the area, it would get better. As time goes on, you will not even know it is their.She was right. Also by putting a soft thick towel around your seatbelt helps alot. Good luck and i promise it will get better!

lilwren69

I had my ICD placement in July, I was told to not lift my arm above my head for 6 weeks and all the usual precautions, The best thing to do as soon as the doctors allow, use that arm as much as possible! My sister had her ICD and they made her wear a sling for 6 weeks and to not use that arm. I was told to not wear the sling and i improved much faster without immobilizing it so much. As always follow your Doctor's orders. My advice is if you don't use it you lose it..muscles need movement to help.

Pavater

My husband is also very thin and found his ICD implant area tender for months after it was implanted. He could not even sleep on his left side. The discomfort did go away though and when he received a new bi-ventricular pacemaker/defibrillator last year, he was fine in just a couple of months. The size of an ICD is greater because there is another lead and it records more information and also has the ability to act as a defibrillator when needed. There is much more tecnology inside an ICD and I think perhaps even more in the bi-ventricular device as he thinks this is slightly larger than his old ICD. Use your arm, pad any uncomfortable areas with something-he even wore an old T-shirt at first with moleskin pad attached to it so he would have moleskin over his device to alleviate seat belt discomfort when he drove. There are also seat belt fleece pads that help. Being thin does make adjustment a little more difficult. Wish he had my padding!

SarcnTired
  • By SarcnTired
  • Reply 3414047 · In reply to 3413881 by Pavater
  • September 28, 2012 at 2:31 pm
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My ICD also is both PM/ ICD so I guess that is why it is so big. I do have a sheepskin cover on my seatbelt which helps some but it is very tender. I can only hope that it does "settle" more but I don't think it will. The top area closest to my left shoulder is where it hurts and sticks out the most, I can feel the wires beneath my skin. I had a mammo last week and was in tears. The technician was wonderful and went very slow but had to re-adjust the machine as it was hitting the ICD. I thought it was just me but apparently I am not alone.

MARYCORINNE

I have had my ICD for 4 years and now rarely even notice it is there. The device will create a pouch and you will not even notice it in time. Welcome to the ICD club!!

Be well and enjoy, MC

dorislee256

I also had one put in, in May. Mine shows just like that. I had to go and by a seat belt cover to go over my site. I actually have a knot under my arm that they think may be the extra wire that slid out from behind the device. They want to go back in and do surgery but I haven't let them yet. The stitches didn't desolve, the site actually festured up three times with the stitches coming out. So I'm not ready to go through that again.

Pavater
  • By Pavater
  • Reply 3418556 · In reply to 3417765 by dorislee256
  • September 30, 2012 at 11:29 am
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I know there are various means to close an incision but you had an issue with healing which is regrettable. My husband had staples both times and the Dr. removed those and he went weekly for incision check. He was told to keep that area dry. He had bleeding after the first implant and had to have his incision opened and the blood evacuated. His first incision healed slowly but the biventricular device implant last year was much easier. A different electrophysiologist and a different result. It is a process for your body to adapt to the implant ,but in the end so worth it to receive this life-saving technology.

CarolJean65

Thanks, again, heart friends for your helpful comments. I've been having the same questions re mine placed Aug 6 of this year . My ICD/CRT is also "huge" on my small thin frame. The upper left area by the shoulder is also the most tender. I noticed that I get shooting pains in the back of my arm or into my scapula at times. I find a sports bra more comfortable. I'm terrified of the first mammogram ... I'm skipping this year! I've actually had a swim suit on once and think I'll get back to the pool soon in about another month. Another question: does anyone else out there do Curves? I'm trying to decide when to go back. Seems like an machines using my arms might be too much.

lilwren69
  • By lilwren69
  • Reply 3418809 · In reply to 3418705 by CarolJean65
  • September 30, 2012 at 1:13 pm
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My sister has defibrillator and goes to curves, I will ask her, what questions do you have?

SarcnTired
  • By SarcnTired
  • Reply 3418961 · In reply to 3417765 by dorislee256
  • September 30, 2012 at 2:09 pm
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What upsets me the most is how misinformed I was prior to surgery about the size of the implant and how long the site would be tender. It is MUCH larger than a PM but you're led to believe it is only slightly larger. I asked to see it once I was I was in the operating room and was really surprised to see the size of it. I'm curious to know if all ICD/PM are so big. A regular PM is 1/3 the size. I hate to think I have to live with this pain forever, we'll see. Thanks everyone :o)

SarcnTired
  • By SarcnTired
  • Reply 3418988 · In reply to 3418705 by CarolJean65
  • September 30, 2012 at 2:21 pm
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As far as working out I have been working out for over 30 yrs. I would suggest go easy on machines that target your pecs and even shoulders, use a lighter weight. You should be fine.

SarcnTired
  • By SarcnTired
  • Reply 3418999 · In reply to 3418705 by CarolJean65
  • September 30, 2012 at 2:24 pm
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As far as working out I have been working out for over 30 yrs. I would suggest go easy on machines that target your pecs and even shoulders, use a lighter weight. You should be fine.

cali_2012
  • By cali_2012
  • Reply 3419880 · In reply to 3418705 by CarolJean65
  • September 30, 2012 at 9:04 pm
  • Report post

I had my pm/icd implant on July 30 this year and they told me not to do arm excercises foe 3 to 4 months. You can pull the wire out.

cathi570

I too was surprised by the size of the device. I am only 5'2" and weigh 98 lbs and it's sticking right out! But I was told by the nurse at the surgeon's office that it will "settle in". I'm not sure where it's going to settle into, but I sure hope she is right! It's only been 2 1/2 weeks, so I'm still on limited movement of the left arm, but if I move certain ways, the device hits bone and that is really uncomfortable. Thanks to Pavater for the moleskin tip, my mind is churning with ideas for bra strap covers! I work for a medical supplier and I will have to look through the post-mastectomy catalogs as there may already be a product readily available. If I find anything, I will be sure to pass the info along here.

LucieCoyote

I may have to get an ICD..............I've told my doctor that if I do end up with one I wanted the St Jude Ellipse and I wanted it implanted under the muscle. The device is smaller, more the size of a pacemaker.

He told me that I was the first patient he's ever had who researched the make and model of the ICD BEFORE meeting with him. I have this site to thank for that!

SarcnTired

I went for a check of my iCD today and asked the technician these same questions. As far as size she said the reason is the battery in an ICD is much larger than a PM. I think which ICD you receive depends on what your heart issue is. All of us have these implants but for different heart issues. I have never, and still do not have any symptoms, but my underlying sarcoidosis and resulting bifascicular block make me a very high risk for sudden death. If I did not have this device and collapsed I would have a very small window of time to be revived. That is the ONLY reason I got it. LucieCoyote is right about the device being less noticeable if implanted under the muscle than just being subcutaneous. The problem is that is a more invasive procedure with more risk of infection. Most doctors do not want to do that. Had I known prior to my surgery i too would have requested that placement, you can bet I will when it is replaced in a few years.

I am comforted knowing I am not crazy or alone in my discomfort. I start an ICD support group next week with my cardios office.

Carol

cathi570

Good for you Carol! I think you will get a lot out of the support group. I had asked about the subcutaneous implant too, but my EP said that I am so thin that it would be just as visible either way and he was not willing to do the more invasive surgery for the same result. I just hope I can regain a full range of motion. Right now, movement of the left shoulder is limited by the corners of the device hitting my shoulder, my ribs and my collarbone. Very annoying, but I will need to wait and see I guess!

shecan06

Hi All, I haven't been online much the last few month. Been going through a lot of oral surgery and getting the Docs clearance for every procedure has exhausted me! Whew,,now on tho the AICD issue. I had mine implanted august 02, 2010....It still gives periods of intense burning stinging, aching pain and is also quite mobile. I've bought 5 different bra styles over the last 2 years and have so much trouble finding ones that give me the support I need and also support the defibrillator, I hope one of you can find the "perfect solution" and share with all. I weigh 122pounds now, but weighed about 145 when it was implanted...the weight losss has made the device more promminent and it literrally pokes out and gets the corner "stuck" on my bra straps at times...best wishes, AND HOPE EVERYONE HAS AN AWESOME THANKSGIVING!!!
shecan06

cajngrl

That is very strange that your ICD is that thick. The latest and greatest ones are so thin now. I got mine 3 years ago and mine is very, very thin. I have a Boston Scientific.

All of us are different and experience things differently. What is very painful to one person may not be so bad for another. Speaking only for myself, I had very little pain during, right after and during my recovery. Maybe my pain level tolerance is just higher than normal...don't know. Mine is implanted right at my collar bone, maybe 1/2 an inch below and right in the middle between my neck and shoulder.

Nonetheless, you should discuss this with your doctor and see what he/she says.

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