Question

Hi There,

Yesterday I found out I needed to get a pacemaker.
I couldn't believe it, I cried my eyes out. I'm a 24 year old women and I couldn't believe how scared I am. In my case I have vasovagal syncope. So I pass out, I've probably passed out about 200 times in my life time. I need to make a choice, should I get one or shouldn't I. All doctors say yes, mom and dad are a go. But I don't know.

How painful is it, not the surgury but in general just to have. I've been reading about bra problems and seat belt problems and what about the scares? Is it big, can you see the pacemaker from the outside, do you notice it when you wear a bathing suit or dresses?

I don't really know what to do?

26 Comments

Once It's in Do you feel pain

by Oreo - 2007-11-30 01:11:08

I understand with the whole vanity thing, I was curious.
I only know being tired, getting faint spells. Honestly it would be weird to not feel that way. I've had this since I was 7 months old. Just no one knew what was.
I just want to get all the facts I can, because I'm booked in for sugury in three weeks.
Did you need time off work?

Hi

by Janice - 2007-11-30 01:11:12

HI Oreo,

I know you are scared. It is normal. You are young and it is hard to accept this new information. But you will be so happy and feel so much better when you have your PM put in. That is alot of times to pass out!!! I have only passed out once in my whole life I'm 49, and it scared the poop out of me. It wasn't even heart related, I choked on something. Anyway, I have had no problem with the bra issue, the seat belt is sensitive to the area for a while. I have had mine now for about 11 weeks now and it isn't as sensitive any more. Depending how small you are, you will be able to see a little lump under your collar bone, but nothing anyone else can notice with your clothes on. Even this gets less noticable as you heal. You won't feel anything, as you are frozen, just feel tugging etc. but no pain. I could feel my pacemaker in me at first, like a tight feeling in my chest, but it gets less and less bothersome every day. You will be fine, and think of all the energy you will have, and you will be healthy again, and NO MORE PASSING OUT!! Go for it, you'll be forever grateful.
Janice

Are You Awake For The Sugury

by Oreo - 2007-11-30 01:11:13

Hi Janice,

Were you awake for your surgury?
I thought they would put you under?

oreo

by jessie - 2007-11-30 01:11:19

listen it is simple if you need it get it. the problems are not so severe that most of us can't handle them. the procedure for me was not an issue. it was only a bit of discomfort after. the thing is yes it is noticeable but so what. i would rather feel good myself and the heck with everything else but that is me. i was not thinking vanity at the time. so think about it do you want to live unwell and then die needlessly perhaps. i din't so it was no decision for me jessie

Do You Notice It Now

by Oreo - 2007-11-30 01:11:28

Thanks Alice

How big is the scare, where is it located?
Do you notice it on you boob at all?
If your wearing a strapless shirt, can you see it?
I'm trying to think of wear the bump is...
Have you ever travelled on an airplane with it yet?

Sorry I have so many questions

I Can Relate

by anemec - 2007-11-30 01:11:47

I just had a pacemaker implated 3 months ago, and I can relate, I am sure everyone else on this site can as well. I did not want to have the surgery, but the doctors were concerned that something would happen while I was asleep. I am glad now I got the pacemaker. I did not realize how tired I was before the surgery, but now I can tell a difference and I do have more energy.

I was scared of the surgery since I had never had any invastive proceedures before, but it was not that bad. They kept me awake during the whole time, but I did not feel anything. I was in the hospital over night and was discharged the next day. The only problem I had was feeling the pacemaker pace me, but a few adjustments at the doctor and I was ok. I have not had any problems with bras, but I did have some with the seatbelt. I got a seatbelt pad for that and now there are no problems there. The scar does not bother me, but I think that is a personal thing.

Of course it is your decision, but if you are passing out on a regular basis I would think that would be a concern. I hope this helps.

Alice from Dallas

Oops-Forgot to Add

by anemec - 2007-11-30 02:11:09

One of the tips I got off this site that really helped was the suggestion of a strapless bra to wear until the site heals.

Think about this.

by boatman50 - 2007-11-30 02:11:16

There are a couple of things to think about. I am now 51 and my pm was put in after I passed out and my heart stopped for 26 seconds in the hospital. Never a problem before so in it went. Now what if I had been driving a car, or a boat? Or standing over a table saw? I have not passed out since, although I now have spells of VVS. After some time I had to see an EP because I kept getting VVS spells, but not passing out. He said that if I was younger he might not have put in a pm! There are other ways to go. But it was too late for me as it was in. Have you seen an EP? See one! After 17 months you can hardly see a scar from the operation, it does not bother me at all. Mine was put in on the right side and since I am a righty it took a bit longer to heal since I wanted to move that arm. I was told later that they should have put it in the left side but this surgeon ( a vascular surgeon ) only did right sides. Remember I had no choice and it was late at night. Why could you not ask for it on the right side if this is something thats planned? No seat belts to worry about. Good luck with whatever you have done.

Questions

by anemec - 2007-11-30 02:11:48

My scar is about 2 inches long right under my left collarbone. It's just to the right of where my bra strap normally is, so it doesn't rub at all. If you are wearing a strapless shirt or a tank top you can see it. At first I did cover it up with a large bandaid if it could be seen so I would not gross anyone out, but now that it has healed I don't cover it at all. It is still a little red, but that should fade with time.

I have not traveled with it yet. I did have to take time off from work. Everyone is different, but I was out almost a month after the surgery. I was tired and taking naps every day for the first two weeks and it took about a month and a half before I could tell a difference.

From reading this forum some people are put to sleep during the surgery and others are not. I guess it depends on how invasive they get. I had the pacemaker with dual leads put in, but they did not put me to sleep. They gave me some medication that made me drowzy but did not put me to sleep.

Alice from Dallas

oreo

by jessie - 2007-11-30 03:11:31

honestly i have a scar but the operation was a breeze they gave me versed and i don't remember it just waking up. i realize when you are young the whole vanity thing. the flip side tho is dying or poor health. i have had mine over a year. i flew to seattle from near michigan. i took the alaskan cruise. i flew to calgary and i drove all the way from michigan to florida so not bad for a 66 yr. old old lady. the itching was the worst in healing and my emortional state after. considering the alternative tho i consider my self pretty lucky. take care of yourself jessie

New Pacemaker

by SMITTY - 2007-11-30 04:11:50

Hello Oreo,

I'm sending by private message an article that I have found to be very good on what to expect when getting a pacemaker. I believe it will answer most of your questions except the one about the boobs and I'll leave that one to others.

I'm sending this by PM because it is long, about 2 to 3 pages.

Goo luck,

Smitty

Question

by aldeer - 2007-11-30 05:11:11

My pm is almost invisible and the scar very hard to find. My swimsuit straps irritate the area slightly, but gets easier as time goes by. I have had my p.m. for three months now, and I really do not feel it is there 95% of the time. The only pain medication that I ever needed was Tylenol. Be sure you have a good EP and leave the worry up to him. You will be just fine, and you have all your friends here that will support you and care for you. Please remember that in this website, there is no such thing as a "dumb" question...we have all "been there" and someone will have your answer...... aldeer

Got my PM for Syncope

by ela-girl - 2007-11-30 05:11:24

Hi there, Oreo!

Wow. It sounds like you are a wreck! Rightly so, I suppose. I want to let you know that I am 30 years old and had my pm implanted via emergency surgery for neurocardiogenic syncope (also known as vasovagal syncope and a bunch of other things, too). I had my pm implanted October 12, 2006--just over a year ago now. Unlike you, I didn't have time to fret over the surgery and all because mine was done on an emergency basis. I'm kinda glad about that, actually! But I understand your fears and questions and there are others of us on this site with the same problem as you. So, you are good hands coming here looking for support!

I had been blacking out for 4 years before the situation that lead me to the emergency pm surgery. It was horrible. My old doctors didn't do anything but medicate me and no test ever caught the problems I was having. I think most of the doctors thought I was crazy and that it was all in my head. At one point, one cardiologist said a pm might help but I was too young and they don't put pm's in young people like me. what a quack! Thank God I now have a wonderful EP who saved my life!!!!!!

There is so much that I want to tell you! For me, my pm has almost totally alleviated any problems or symptoms that I was having. However, be aware that even with your pm you can still have the same symptoms and problems you were having before getting the pm. I know many of us here in the club with VVS have done SO MUCH better with the pm, so take heart!

If you are anything like me, the pm will give you your life back. I had such severe bradycardia that my heart would beat 4 beats a minute endlessly...all I ever did was sleep and hope I didn't die or end up with permanent short-term memory loss. I couldn't drive either. Working was a disaster. No one should have to live like that! Now I hike and bike and drive and everything! It's wonderful! I don't even realize most of the time that I have this life-saving device in me! It takes time to heal and recover from surgery, but it does get better. Lots better!

My pm was implanted under the muscle and into the breast tissue a bit on my left side. The pm sits in a pocket and is even sewn down so it can't move around. I was put under for the surgery, so I didn't have any pain. I stayed in the hospital for 1.5 days after surgery just to be monitored. I didn't need any pain meds after the surgery--just ice to soothe the area. Ice really helps! I saw a pm rep before leaving the hospital--he checked to make sure my pm was functioning properly. I also got a temporary pm id card and a booklet on my pm. Make sure you get these before leaving. I was also give an arm sling and something to fasten my arm (on the pm surgery side) to my waist while sleeping so I didn't raise it over my head. Be aware that doing your hair and washing your hair in the shower is going to require some forward thinking! Invest in a hand-held shower head/hose. My scar is about an inch now and very light. You can't see the pm under my skin at all. I'm a teacher and took a few weeks off to recover. I am glad that I did. It took me close to a year to be comfortable with car seatbelts. I didn't wear a bra for a few days after the surgery. When I started to, I just put a little folded hankie between the strap and incision site for comfort. I have flown a number of times since having the pm...easy breezy! I always ask for a hand pat down to avoid the machines. I have to show my card. No big deal.

Wow. This is a long message. PLEASE private message me if you want to talk more. I'll pm you my email addy.

It will be fine!!!! What a great Christmas present!!!!
ela-girl

Just do it.

by bowlrbob - 2007-11-30 07:11:09

That's a famous saying of Nike. Seriously I am much older than you but I have had conversations with Ela-Girl and she is much younger. Go along with her she knows what she is talking about. As for my 2 cents worth I also have VVS I had only passed out 4 or 5 times over 4 years. When the bad one came I was out for 3 and 1/2 hours and then Bradycardia kicked in and I was 10 beats a minute. The pacer has been a life saver. I was also set up with what is called a rate drop response. This keeps you from passing out. When my heartbeat drops by 25 points then the pacer goes from 70 to 100 bpm for 2 minutes this gets the blood pressure up and keeps you from passing out. This has worked great for me for 1 and 1/2 years. No more passing out or being dizzy. The small amount this might show is well worth what it gives back. JUST DO IT. Bowlrbob

Are you Awake....

by Janice - 2007-11-30 08:11:47

Hi Oreo,

Yes, I was awake during the surgery. I live in Canada, and I think they always keep you awake here for the PM surgery. I know in the States, from all that I read here, most people are awake, but alot of them are pretty sleepy, and don't remember anything. I remember everything, The reason for being awake is because they asked me to cough hard a couple of times and to take a couple of big breaths. This is to make sure that your leads are "stuck in" I guess. I was in and out of surgery in 45 minutes. If you would like to e-mail me, don't hesitate oreo. I know what you are going through! I think it is better when it is on an emergency basis, then you don't have time to worry about it!! I found out I was getting mine in July, but didn't get it till Sept.13. It will be over before you know it! Like some of the others have told you, it is a little sore afterwards, but nothing you can't handle. I just took x strength Tylenol for 3 days or so, then nothing. Take care and keep us updated.
Janice

Hi and Welcome!

by tcrabtree85 - 2007-12-01 01:12:52

Hi Oreo,
I sent you a private message earlier and hopefully you got that. As Cathryn said I am one of the younger ones in the group. I have had a long week and do not remember exactly what I wrote prior so you may hear the same stuff again.
I have not read everybody's response to you as I have not had time to do it all. Though I am sure everyone has told you some very good stuff about getting the pacemaker itself.
I knew that when I went in for my planned surgery I had a 70% chance of getting a pacemaker they told me this ahead. I was really sorta kinda nervous but did not share that with anybody and even the doctors. I was more nervous about the looks and how it would look. I wanted a small scar so it would not be so noticable. I spent a lot of time thinking about things like: will I be able to go out to a party once in a great while, can I get the tattoo that I really want, will I be able to have a child, will somebody ever want to date me knowing how unhealthy I am, and many other thoughts came to my mind.
I went on having the surgery knowing that I was feeling like crap and tired of feeling the way I did and anything would be better than that. I still have a lot of up and down things but I also have more problems with my heart. I do believe I told you that I would also pass out at any random point or get really weak like I was going to.
I have this amazing computer that is keeping me going sure the scar is ugly, but it also is kinda cool knowing that I have a chance to be around to see things that I wanted to one of the most important things for me was to become an auntie and I just became one the other day. I can also have a drink on occasions still, I do believe if I didn't have four heart procedures I would be able to function more normally.
Sure it will be an inconvenience for a lot of factors but it is worth it if it will give you the chance of feeling better in the long run. Also now take advantage of the time off take it off please if you can. You need the time to recover which takes a while but you also just need that time to get use to having a pm. I recommend that you go to your local video store and rent as many movies as they will let you or borrow a lot of movies from friends.
When it comes closer I and so many more will be able to tell you strategies of what to do after surgery to get comfortable have lots of pillows. I had one place on both sides of me incase I decided role over. The surgery did not hurt at all you get some good drugs I was awake for it which was not bad.
No Worries my friend you will be good to go. You have many people praying for you and your family! I wish you the best of luck!
Tammy

Options

by Terry - 2007-12-01 01:12:56

Some women have elected to have their pacemaker implanted under the breast or sub-muscular.

More importantly, consider where in the ventricle the electrode will be placed. Electrode placement can effect long-term outcome - ask your implanting physician. Personally, I like the His-bundle location which has provided a natural, physiological contraction of the ventricles without the issues pointed out in the DAVID Trial and the MOST Study, for many patients.

Terry

Just explore your options for piece of mind

by mobags - 2007-12-01 07:12:44

Hey Oreo,
I got my PM just one month ago but it was a long road in deciding if it was the right thing for me. I also have a component of VVS and symptomatic bradycardia (my nervous system is wacko!). I was passing out or almost passing out daily but had learned to deal with it....I joke I've learned how to take a fall. The doc almost immediately started talking about a pacer and I was all WOOOOHHHHH back up! I'm only 32 (at the time) way to young for a pacer. Thinking things like everyone will be able to see it, who would want to date me afterwards because who wants that kind of baggage and part of me felt like I should be able to suck it up and deal with it. So I tried but I kept feeling worse. No energy, I would wake up and feel like there was no way I could make it through the day. During the year this was going on I saw a million and one doctors for various options.

Their is some medical management for VVS oddly enough beta blockers are one of them and they did help decrease my episodes from the VVS but made my rate even lower which made me feel worse which lead me to trying the pacemaker (in my head as a temp measure to see if it would help) and you know it really did!

I would say for your piece of mind to explore all your options before you commit to a pacemaker and if those don't work well then you know you tried everything before you got it. Maybe some meds will help you, maybe not.

That being said I will say my scar is about 1.5 inches long and is hidden under my bra strap. No one can see it even in low cut shirts. I have no problem with my seatbelt and after a week or two no problems with the sports bra. I was back to work in 5 days and running after a week but my doc is very lenient about activities. I did not receive any sedation for my procedure....it wasn't fun but I did it (personal choice) I work in anesthesia and most always it is done with some sedation (kindof like for a colonoscopy) you are awake but don't really care, if you have any discomfort just speak up and anesthesia will give you more meds and the surgeon can give more numbing medicince. Most people stay overnight but I went home right after.

Also consider the fact that if your conduction is intact you really only need to be atrially paced. That's what I am only one lead: no messing with my valve or ventricle thank you very much!

Feel free to PM me since I have had all the mental and physical problems you are having. I'm more then happy to help work them out together.

-mobags

Simple Proceedure

by Pacer - 2007-12-01 08:12:21

Hi.
I had my ICD implanted last Wed. An ICD is a more elabrate PM. It was easier than going to the Dentist. I had never had anykind of Surgery before and was a bit nervous but once I was knocked out, I didn't remember or feel a thing, I'm 43 and was diagnosed with Cardiomyopathy about 2 years ago, My Cardiologist prescribed medication to help fix my problem but the Meds didn't really help all that much and because I live so far away from any real medical facility, he suggested that I have an ICD implanted. I ended up spending the night in the hospital and was released the next day. If the Doctor says you need one, Get it, you will feel so much better, I promise you.
Good Luck on what ever you decide.

If I could locate my camera I'd take a piccy and send it.

by scpck - 2007-12-01 09:12:50

I had no choice really. You do go through stages of grief....anger, denial etc. Yes it hurts a bit Darvocet-N type hurt for a couple of days. Mine shows a bit since I've lost weight, but it's not really noticeable. Look at the top of this page the gray circley thing around the word HOME is the shape. The size is smaller than a pocket watch. Closer to 2 half dollars stacked. I have a scar about 1" long, still pink looking as I have fair skin and I do tend to form hypertrophic scars-kind of like keloids but not.

After I got over the initial shock of hating the thingy, I got to where I would tell people about it and then show my tiny scar. Kind of like show and tell at school. But then I'm a crazy old lady about 2 1/2 times your age. I find that the shelf type bras with the very thin straps feel better right now. I can handle most seat belts except in my van and then I put a folded 4x4 gauze square and a band-aid over the scar for a cushion.

Bottom line is I'm not dead 'cause someone caught my heart pause and got me the help (pacer) that I needed. Try it you WILL like it-being alive that is.

Welcome to the club. And do like the rest of us and take one day at a time and ask anything at ALL. OK?

no choice

by jessie - 2007-12-01 10:12:29

like scpck it was not a choice or i would not be here enjoying my grown children husband and grandchildren. it was either or for me too. no choice if i wished to remain on this earth and i am glad i am here. so you might say i am a crazy old lady too. where is valerie? she could vouch for that lol lol jessie

Pacemaker at young age

by vbilbrey - 2007-12-02 01:12:15

Oreo,

I am 29 and have a PM and have had one since I was a baby. It's weird for me because I don't remember life without one, yet it seems that each time I have my PM replaced I get nervous about going in to surgery. Like others have said here you will eventually forget you have one. And it will improve your life tremendously. You will be able to be much more active than you currently are without the fainting spells.

I don't remember the bra problems (my last surgery was almost 12 years ago), but I do recall the seat belt bothering me. That will go away with time.

Pacemakers are much smaller than they used to be. I used to have one the size of my fist when I was younger, but now they are at least half that size. No one would be able to tell unless you show them. Even with a bathing suit they may or may not be able to tell, depending on how dark the scar is.

I hope all goes well with you. Let us know what happens.

By the way I have my PM changed out again in a couple weeks (on the 12th anniversary of the last change out). I wish I didn't have to have it done, but I have no choice.

Take care,
Ginny

Pacemaker will save you life!

by pmredhead - 2007-12-02 03:12:09

Hi Oreo,

Welcome to the club. I'm in the same position as you. I'm 23 years old and diagnosed with congenital heart block at birth. Most of doctors told me that i would need a pacemaker in my life at some point. All my life I've been having chest pains, shortness of breath, fainting spells, etc. Tired all the time, low energy and feeling like my heart was going to burst. Well i went to a cardiologist a few weeks ago, he put me on a 24hour heart monitor, took an ECG. The next day i went back to find out about the results and he told me that my heart had stopped for 3 seconds during the night. When he told me that i cried and i wasn't sure if i should get a pacemaker but i told myself that it would save my life and i would feel better than i did. I thought that i would never wake up, and that scared me. I know your scared, i was scared to, but now i'm going to have mine this week. I'm nervous about the surgery but i know it will save my life. If you get the pacemaker it will save your life, i know it will. Listen to heart. You have a chance, take it. You have an opportunity, go for it. Be strong and trust in yourself.
Good luck with whatever you decide. Let me know how things turn out.
Constance

Re: Question

by Angrevwilliams - 2007-12-03 08:12:14

I think getting a pacemaker will make you feel 100% better if that is what the doctor suggested.
I am a 22/female and have had the pacemaker since i was a baby. my body is a road map covered in scars, open heart, first pacemaker implanted in my abdomen now in my collar bone, those indents from the lung/heart machine, etc. The actual pacemaker scar in your collar really isn't so bad. when I had my last pacemaker replaced they were able to glue the incision which didnt scar as bad as stitches! with the pocket they make you cant actually see the pacemaker physically popping out of your skin. I never have had a problem with bras or bathing suits (I just wear tankini's over bakini's to cover the majority of the scars) and for airports- you tell them as you near the detectors and you get the royal pat down treatment :) it's not so bad. half the time you are able to cut the line too!
I hope you decide to do what best suits your health, but I think here you won't here anything negative or anything you wont be able to get used to about pacemakers :)
-Angie

Re: Question

by Liv - 2007-12-03 12:12:50

Hi Oreo,

I’ve had my pacemaker for over 7 years now and I was 20 when I first got it. I had all the same concerns that you have now. I didn’t think I needed it at all and just got it to make my parents happy and ease their minds; however I now realise the seriousness of my condition and the need for my pacemaker so am happy I went through with it.

For me the actual pacemaker is not painful. It took a bit of getting used to and I found certain things slightly uncomfortable but they are of no real consequence to me (for example, my PM is on my right side so when I’m doing stretches I just can’t stretch my right arm too far across my chest etc). I know some people have difficulty sleeping on the side the pacemaker is on but personally I don’t have that problem. Bras have never bothered me either the strap actually sits about half an inch to the side of my PM. In my experience my PM hasn’t really caused pain as such just discomfort which is easily overcome.

As for the scar… it has never bothered me at all one month after my surgery I even wore a corset to my 21st birthday party and trust me the scar is hard to find! To this day I still wear strapless tops and dresses and have not had one person comment or caught one person looking at my scar (although if you wear the right top their eyes are generally a few inches lower right? Cheeky!!).

I do have a slightly stubborn streak though in that my surgeon told me that having a pacemaker will not affect my life in anyway and as a result I am determined not to let it!

I hope this has helped you in some way.

It's not that bad

by bionicmary - 2007-12-27 05:12:53

There's not much to add that hasn't been covered yet, but I will reinforce what everyone else has said. I got my PM when I was 24 like you and was concerned with the same issues. Basically the surgery is a breeze, I was awake the whole time and did not feel a thing. The healing process is quick and not that painful. Try to have the docs put your PM in your non-dominant side. I had mine placed on my left so I still could write and brush my teeth, etc. The scar eventually fades and is located underneath your collarbone, it shouldn't interfere with your bra straps. I also have a seatbelt pad because that did bother me a little bit. As for the bulge under your skin, it is hardly visible. The PM is only a little thicker than a coin and about the size of a 50 cent piece. As a young women, I understand your concerns about getting this but you have to factor in your quality of life first. For example, before I got my PM, I passed out and hit my face on the concrete in front of my entire squadron. I broke my nose, busted my lips and my face was a bloody mess. I think I'll take the 3 inch scar anyday as opposed to looking like the Bride of Frankenstein. Good luck!

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