Repositioning of Device experience?

As many of you may remember, I had my ICD replaced last January due to battery life and upgraded to a 3rd lead.  Shortly after it was replaced, it dropped down into my breast and turns 90 degrees when I lie on my right side.  I've had to wear a bra 24/7 to keep it from turning.  It has continued to be very painful and when it flips back it feels like it gets caught.  After months I was hoping it had scarred down, but it has not.  My 'new' EP said he doesn't do repositioning and gave me a name of a thoracic surgeon that specializes in lead removal and repositioning.  I no longer see the EP that replaced the ICD.  I had Barostim surgery about a month ago and the vascular surgeon recommended I see a surgeon (same name as the EP recommended) for repositioning. I saw the surgeon (different hospital) last week and I was totally shocked at his reaction, as I thought I may be wasting his time.  He said he knows it's extremely painful, as it is far down in my breast and he's concerned about the damage that could occur to my leads.  He doesn't know why it had dropped so low.....and I told him I was wondering if it was placed in a pocket....  He told me that since I'm 100% dependent with all 3 leads that I cannot risk damage to the leads.  He said it will be very complicated with several days in the hospital.  I am to call tomorrow with a surgery date, and will plan on possibly early December.  I am still numb with this news.  I know I can't endure the pain for 4 more years.  Even with limited physical activity with the barostim recovery, it continues to be painful and a constant ache.

He is also interested in my biopsies I have yet to get results from my former EP, and he made a phone call while in the exam room, I believe calling a company that some of my biopsies were sent.  He definitely jumped onto my case and was knowledgeable regarding my heart history.  I am looking at it as another set of eyes. 

I know repositioning is done for many different situations.  He would not offer any strategies until he does testing including a CT.


5 Comments

Hope all goes well for you

by Gemita - 2022-11-06 17:48:47

Dear Karen,

I am so sorry to hear about this and just wanted to offer support.  I am like you, forever hopeful that with another set of eyes, you may make some real progress.  This guy is either very caring or sees you as an interesting challenge and wants to succeed in helping you.

In the meantime, perhaps your neuropathic pain med, Gabapentin will help.  I don't know whether you can increase your dosage to help with the pain?

I see you were due to have cardiac rehab in early December as well.  Oh everything comes at once, doesn't it but you will get through this and be all the stronger for it.  Have you noticed any changes/improvements with Barostim therapy?

I am still on my first device and although it moved initially towards my left armpit, it did eventually settle and I didn't need repositioning.  There are members who had their devices repositioned and are now more comfortable.  I will try to find some links and post them in case they are of help.  Clearly though you are a special case and I am glad you have an experienced surgeon willing to take this on.  Good luck Karen and I truly hope you will soon be more comfortable in all respects xx

Repositioning

by Julros - 2022-11-06 18:10:22

I am so sorry to hear about your pain, but it seems hopeful to have someone actually hear you!

I have not had repositioning, but I did experience a great deal of swelling and pain after my first implant, that lasted for a year. My complaints about the pain was pretty much just brushed off. I recently underwent a replacement/upgrade and was hesitant to endure another year of pain. The EP and her fellow were very interested in my experience and did what they could to minimize the pain and swelling. Even though the new device is considerably larger, the pain was gone in weeks, other than tenderness directly over it. 

I hope you get favorable results and resolution of  the pain. It really is a tough way to live. 

Found a few links

by Gemita - 2022-11-07 06:31:22

Karen, I have done a little searching for you by using my general web browser and typing in Pacemaker Club ICD movement or Pacemaker Club Repositioning of device and have found several posts on this subject.  As you can see, it has been a problem for a number of members, so you are certainly not alone.  Anyway, have a read and see if any of the comments help, although some of them are somewhat rude, but amusing! 

https://www.pacemakerclub.com/message/16587/device-moving-into-breast

https://www.pacemakerclub.com/message/4325/relocation

https://pacemakerclub.com/message/10398/icd-movement

https://www.pacemakerclub.com/message/36129/repositioning-of-icd

https://pacemakerclub.com/message/9928/migrating-icd

https://www.pacemakerclub.com/message/34358/pacemaker-relocation

Not Sure if This is the Same

by MathTeacher - 2022-11-11 12:50:40

Hi,

     I'm not sure if this is the same for you, since I have a pacemaker, but I was concerned about repositioning when it was first implanted.  My EP told me he's got it sewn to my chest wall, so it's not going anywhere.  I have no idea whether they can do that for you, too.

     I wish you well, as you try to find a solution to your problem.

Update....Barostim recover & repositioning of ICD

by islandgirl - 2022-11-23 13:40:15

Thank you all for your information and positive thoughts.  You are all amazing!  I learn more and mroe all the time from this site.  

The surgery is scheduled for Dec 14.  I have a CT scan Monday and see the surgeon Thursday to find out how he will approach the repositioning.  My first 2 devices slid laterally with the edge protruding near my armpit.    After the 2nd device the lateral side of the pocket was sewn to keep it from sliding, but it still slid laterally. I'm very active, so not surprised it slowly moves.

Yes, they are supposed to be tacked down.  I am wondering if it was ever placed in a pocket......  

I'm very apprehensive/dreading the surgery.....going through something else again, and get so nervous in hospitals. I know I can't endure the constant and varied pain over 4 more years--the life of the ICD, and the pain seems to have gotten worse, with now a lot of discomfort when I lie on my left side, too.  I'm more active out of the healing phase from the barostim surgery, so I'm sure that's playing a role in more irritation.

Gemita--Thanks for the links.  I had spent some time reading the repositioning postings.  

I dont' take Gabapentin any more.  The new EP and HF surgeon took me off of it.  

I am still recovering from the Barostim....new device and still sore and swollen, but normally should scar/settle in over time.......  I look at is as normal pain. They've adjusted the barostim device twice, the last one up to 3.4.  I may??? have some lessened SOB.  I see the HF surgeon before the surgery.  She said her limit is usually around 8.  I still can't take the entrestro, as my blood pressure dropped way too low....70s/50s and I couldn't function after the 2nd dose, and I was only taking it in the evening to start. I was extremely disappointed this hasn't shown any resolution.

I was glad the thoracic surgeon was extremely empathetic regarding the pain--even saying he knows how extremely painful it is where it has dropped.  The barostim surgeon was a great advocate for me to see the surgeon, and before I had the barostim he touched where my ICD 'should' be and I welled up in tears and probably pulled back due to the pain.  I hadn't paid attention to what he was touching.  I was embarrassed, as I'm the stoic on the outside patient and melt inside.  It still continues to be very sensitive and painful and there is a coil of leads in that area.  

I'll give you an update after the appt Dec 2 with the surgeon.  I hope you don't mind me leaning on you all for support.  

Thanks!

Karen

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