Mom's ICD...very concerned

Hello! My dear mother has a St.Jude ICD which was implanted in April, 07. ( I might add she is a tiny woman...barely 100 pounds) In July, she had to go back in because one of the leads had come loose. Now it appears as if something is sticking out...lead that was capped off...she calls it an "ice pick" because it is so very painful. Right now, even showering hurts her.

The suggestion now is to go back in and place the ICD under the muscle to give her relief. I guess I'm afraid to put her through this again?

Has this happened to anyone else? Also, is depression common? The other factor that is a real problem is smoking albeit not much...she will not give it up despite also dealing with COPD. We are trying Chantix one more time.

This may sound like I'm rambling...there's just so much I'm worried about. I would appreciate any comments from family members and other patients. Thank you so much!



by CathrynB - 2007-12-13 11:12:54

Hello Concerned Daughter. The problem your mother is experiencing is not common, but it's not unheard of either. I had my PM implanted in January and had the same problem. Although my doctor was able to implant my PM deeper, without going under the muscle, I did have to have follow-up surgery to move things to get rid of the painful lumps -- both the pacemaker and the capped off leads were hurting so much that "ice pick" is an excellent description for it. It didn't hurt too much as long as I kept my arm completely still, but any movement felt like I was being stabbed. And it's not possible or a good idea to keep your arm completely still to avoid the pain. That would lead to frozen shoulder which is also extremely painful. Only your mom and her doctor can decide whether the surgery is a good idea, and whether her health is such that she can handle it okay. Putting the ICD under the muscle is initially more painful post-op (than just under the skin) and takes a bit longer for recovery, but there are a number of people on this website who have their PMs and ICDs under the muscle and find it to be very comfortable in the long run.
Depression is also not uncommon, but I've not experienced that so will leave that question to others.
Your Mom is very fortunate to have such a caring supportive daughter to help her, and I wish you, and her, all the best in sorting out how to deal with her various issues. Please keep us posted on how things are going.
Take care, CathrynB

Hi there

by Carol - 2007-12-13 12:12:10

Sorry your mom is having difficulties. You asked about depression and I think that many of us here have experienced that- maybe not so much from just having the PM itself, but from the realization that things are different now and from the feelings of "loss" over our feelings of invincibility. I can't speak for everyone, but I know I sure felt that way. The other thing is that chronic pain can lead to and worsen depression. I don't know how old your mom is but after the initial surgery and all of its tenderness I think she'll feel alot better without that Ice Pick! I had mine implanted under the muscle 2 1/2 months ago and I can tell you that it's barely visible and not really sore at all (I weigh a little more of course 140#)....maybe just a bit if I forget and lean against it or my kitty gets a little too aggressive with her kneading paws. Is your mom able to make her own decisions? If yes, how does she feel about going thru surgery again? and if not, you'll be making your decision based on the medical info you've been given with your mom's best interest at heart, and that's all you CAN do.
As much as you'd like to see her quit smoking,..she may look at it as the one thing she has control over, in which case she'll only give it up when she's good and ready. I do sincerely hope everything works out for her and wish you all well and a Happy Holiday Season. Carol from Florida.

Thank you!

by Concerned Daughter - 2007-12-18 08:12:07

Thank you, Cathryn and Carol, for your kind words. :) My mom is having her consulation with the surgeon in January about relocating the ICD, and she feels pretty good about it for the most part. Of course, no one wants to go through it again, but the thought that the "ice pick" would be gone is quite a motivator. Since this will be the third procedure, we know what to expect, etc., which is helpful, too. My mom is quite a trooper for being as small and frail as she is!

Happy Holidays!

Update on my on Monday!

by Concerned Daughter - 2008-01-31 12:01:56

My mom is scheduled to have her icd moved behind the muscle on Monday, and are glad that we will get rid of the dreaded "ice pick" (capped off lead) that is causing her so much pain. We are nervous, of course, but also glad relief is in sight. The doctors fear that the capped off lead could eventually erode her skin and literally come through, and we want to be proactive with this vs. reactive.

If anyone could spare some good vibes or words of wisdom, we would be appreciative! :) THANK YOU!!

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