Hi everyone,

I'm new to the board but have been reading some of the older posts and finding them very helpful. I'm 24 and will be getting my ICD next Tuesday. My Dad got his last summer and my uncle just got one last week, so I do know a bit about them, but so far I am the only female in our family to need one. I have HCM and Brugada syndrome. My Dad, aunt, and uncles have HCM but I am the only one who has been found to have Brugada syndrome. I was supposed to have an ablation for Wolff-Parkinson-White syndrome in February, but when they got in there they found I had Brugada syndome instread of the WPW.

My main worry right now is the appearance of the ICD. I am quite small - 5'1 and 100 pounds - so my cardiologist said he will implant it under the pectoral muscle. Will this make a difference? I have also heard that it can be implanted under the breast - would this be better? Is the surgery to implant it under the breast more difficult?

Any advice would be much appreciated. I think I will probably call my cardiologist and try to talk to him - he is 3 hours away so it is sometimes difficult to get all of my questions answered!

Thanks everyone,
Helen

 

 

Hi Helen,

I am 34 and also fairly small (5'3" and 120#). I have a pacemaker, not an ICD, and I think pacemakers are slightly smaller. My pacemaker is not under the muscle, and it does bulge very slightly, but blends in fairly well with the top of my breast tissue. (I notice it some, but I doubt anyone else does and I frequently wear tank tops now without even thinking about it.) I have heard that devices placed under the muscle are even less visible. My doctor did not want to put it under my breast because I may still want to have children, and he said that placement there can make it difficult to breastfeed.

I hope this helps! Jen

 

Thanks Jen!

I am glad you told me that it can cause difficulty with breast feeding - I didn't know that. I don't have any children but will probably want to in the future. I have also heard that it can make mammograms less reliable and since both my Mom and aunt have had breast cancer I suppose I should keep that in mind as well.

I'm also glad to hear you are comfortable wearing tank tops and aren't finding it very noticeable. I feel a bit silly worrying about how I will look when I know that there are more serious issues, but I really just want to be able to live normally with the ICD.

Thanks again for the advice :)

Helen

 

Hello Helen,

I certainly do not agree that your are being silly worrying about appearance with a pacemaker, when as you say "I know that there are more serious issues." The issues are totally separate in one sense but they just happen do come in the same package.

While I certainly cannot answer any of your questions, I think you are very wise to learn as much as possible about your options before the surgery so that you don't have a lifetime of "what-if."

I wish you the best,

Smitty

 

There are a few women on this site with ICD's. One who had the "traditional" underskin implant, had issues, and had it relocated to under her breast. I can tell you that she was much happier with the ICD under her breast. If you are thin, lean, or have any muscle, it's going to be noticable no matter what, but under the muscle, it will be more of a hump than a defined ICD device. don't forget that an ICD is around the size of a pack of cards, a decent size flip phone. Mine is 2.5" x 3" and around .5" thick.

Not being a women, I wouldn't specifically know what it looks like, but on a man, it's very obvious I have one, mine sticks up around 3/8" around most of the implant. I also am angry about the "what if". If I had more time to research mine and if my EP had given me a choice, I would have definately taken the sub-pectoral implant.

for example, I think at a couple of feet, if it's under the muscle, you really can't tell you have an ICD. Just under the skin, mine is visible through an undershirt at 5+ feet.

If you need it, you need it but I also think you should do what you feel is best for you.

 

Thanks Smitty and turboz24. You're right - I don't want to go though this in a hurry and then be kicking myself afterwards for not asking the right questions. It sounds like the sub-pec implant might be best for me but I will talk to my ep about getting under the breast as well.

My Dad's implant is just under the skin and it is very visible although it isn't really visible under his clothes, unless he is wearing a really light t-shirt or something as you said.

I'm a little nervous about the surgery but not too nervous so far. I metabolize anaesthetic really fast (I started hurting halfway through the EP study I had done and I usually have to have several injections throughout a procedure) so I just want to make sure they know that!

Thanks so much for the advice everyone. It's great to find this forum and know there is a place to go to ask questions!

 

Hi Helen,
Welcome to the group! We are here for moral support and humor as well as information. I'm one of those witty gals from Texas. So take no offense to my wise cracks. I call my pacemaker my internal bling bling.

You will be on my prayer list as you proceed with this journey. Take care and let us know how you are doing.

Harley 63

 

Hello,

I have a pacemaker and mine is under the skin and likely under some fatty tissue located right under my left collarbone. I can feel the outline of it if I touch the area, however, mine is like jenh... it has a slight bulge, but that is it. My scar is about 2 inches and isn't much to look at... (not very big, no big deal...)

With that said, I am 60 and have a few extra pounds... so I think that basically hides my PM. I did a google search on ICD's and PM's in the images and found just one of a thin, older man and his looked like it was right under his skin.

In addition to thinking about placement for future bikini's and such :) you might also ask about placement in regards to mammograms, breast feeding, and other issues for women. If you can't get ahold of your doctor, you might see if there is a local hospital that knows folks who have ICD's and people who are younger who might give you their take on the issue. I find my PM is irritated by my bra strap a lot. I have only had mine a little over 2 months, however, so I am hoping it will get better over time.

There should be someone who is an "education specialist" at the hospital where you will have your procedure done and they may be able to provide you with information as well. You are doing all the right things trying to find information now. It will save you grief later!

Good luck and I hope you feel better soon!

Swedeheart

 

Hi Helen,

I'm not as small as you are -- both taller and heavier -- but I think you're really smart to recognize this issue and make an educated decision about what will work best for you. My pacemaker was originally implanted directly under my skin near my collarbone. I'm very thin there, and it was always uncomfortable. It protruded prominently and my shoulder ran into it every time I moved my left arm, causing pain. I do lots of outdoor activities involving the muscle right under the PM (kayaking, bicycling, etc) and it always was uncomfortable or painful. In addition, I eventually started showing signs of skin erosion (thinning of the skin that can eventually result in the PM breaking through) and my doctor recommended I have it re-positioned. Six months after I got the PM, I had it surgically re-positioned about 3-4 inches lower on my chest, and more toward the center to get it away from my shoulder -- so behind the upper breast tissue, but still on top of the muscle. The surgery to re-position it was not complicated and much more minor than the original implant. It took about 30 minutes and I was back home 4 hours after leaving home in the morning. The post-op soreness was about the same as the original implant, but because the electrical leads had not been moved and no involvement with my heart, I did not have the arm restrictions that come with normal implant. I was on restricted activity for about 2 weeks and then back to normal activities. It was no big deal. My pacemaker is not visible at all in it's current location and is completely comfortable, even for running, skiing, biking, kayaking, etc. I'm due for my first mammogram in 2 months, so can't tell you about that yet. And I'm 51 years old, so past the point where I'm concerned about breast-feeding. The electrical leads are still visible under my skin near the incision/scar (they used the same incision the second time around, so I have only one scar) but that's it. I think either behind your breast or under the muscle is most likely the best way to go for a person of your size, but I can't tell you which would be better for you. Best wishes for a good outcome,
CathrynB

 

Well Helen welcome to our site. I am younge like you im only 21. It is not silly or crazy of you to ask any question on this site. We are here for you when ever you need us. I had my pacemaker implanted on December 5th 2007 under my pectoral muscle. You cant see a thing. If you look up close and if you are me ( or you in your case) you may notice a slight lump in you chest but its not noticeable to others. The only way alot of people know I have a pacemaker is from my scar and its location. Mostly its just older people that notice. Others just thinks its a crazy scar. Sometimes ill make up a funny story about it. But other then the scar it is not noticable. My doctor never talked to me about placing it under my breast so im not the best person to comment on that. But I think whatever you believe to be the best decision for you, it will all work out. Best of luck. If ya ever need to talk feel free to send me a private message :-)


Britt<3

 

Thanks again everyone! I am really glad I found this site. It's great to hear that for many of you the ICD/pacemaker is not very visible.

I think I am leaning towards getting the implant under the pectoral muscle, rather than under the breast because of my family history of breast cancer. I'm going to talk more with my EP but I think I'm probably going to go with the subpec implant.

I am looking forward to getting the surgery and having it over with so that I can just start getting used to the ICD, and getting back to my life. I haven't been able to exercise much since the diagnosis of cardiomyopathy, and I would love to be able to start again. I'm also looking forward to feeling more secure, especially since I live alone (although I am home with my parents for a while after the surgery). It's been nice that my Dad has already gone through this so he's been really supportive as well.

And Harley 63... I love the idea of having internal bling bling. Sounds good to me!

Helen