Three long years........

So here is my story. I had my pm implanted unexpectantly in March of 2008. As soon as i came out of surgery I was in serious pain, which can be expected after any surgery. The thing is though, is that this pain never went away. This pain is a constant, sharp, stabbing pain in the middle of my chest. It always hurts but the intensity goes up and down. If I do anything with any effort I have to sit and rest for the next day or so because of the pain. No pain medications even touched the pain. I have seen many, many doctors, in the past three years, to try to find out what is causing this pain. The have preformed every test possible and they all have come back normal. We have tried everything possible. Some doctors said it was all in my head, others said I'd just have to live with it. I then went to the Mayo Clinic in Minnesota. They too could not find out what was wrong. They then decided that they could replace the leads to see if this maybe will fix it. This was my last option. The surgery can be risky and we didn't know if it would actually work. So after 3 1/2 years of extreme pain I decided to go through with the surgery. So 2 weeks ago on October 12 I went under the knife. When I came to I realized the pain was gone! Well I was in pain from the procedure but this was a different kind of pain. The surgeon said the leads were screwed in slightly too far, slightly perforating the heart. I was cured! So I thought..... Yesterday, 2 weeks exactly after the surgery, I felt lightheaded, weak and really hot. I thought I was coming down with something. Then the pain came back with a vengence. Though it was slightly in a different spot the pain was much more intense. My daughter took me to the emergency room that afternoon. They did all the same tests I've had done several times before. They all came back normal again..... I'm back at square one........... The only difference is that pain medications are helping some this time. So we're hoping it could be different this round. Has anyone else suffered from a similar situation?

3 Comments

TYour Horror Story

by SMITTY - 2011-10-29 01:10:57

Hello Yeager,

Before I start my rant, will you tell us why you got your pacemaker.

I have read lots of horror stories on this site over the few years I have been a member, but yours puts all of the others in the shade. It can certainly serve as a reminder that not all pacemaker implants are routine.

The thing that really bothers me is your being told that "Some doctors said it was all in my head, others said I'd just have to live with it." We go to Dr to have health problems, including pain, solved. When someone has a problem that was obviously caused by the implanting of a pacemaker it would seem to me the logical thing to do would have been go back in and remove everything pertaining to the PM and start over. But I guess that is too much to expect as it may indicate a Dr is at fault.

All the more reason for me to think too many Drs treat pacemaker implants as cash cows. They know that a good percentage of them will be relatively trouble free and many even do what they were implanted to do. Those that cause problems like yours, well the first order of business is to convince the patient the problem is not caused by the PM. Some go so far, as you know, as to tell the patient it is all in their head.

Right now there are several million pacemaker is service, and I'm of the opinion that too many Drs and manufacturers are getting a free ride when problems occur. We desperately need someone, some agency, or something to take our complaints to after we have been told twice by a Dr "the trouble is not your PM" an we know we didn't have the problem until we got the PM implant.

Yours is not the first time I have heard of the heart wall being punctured by a PM lead. I wonder how many times it has happened and how many people have been buried by that mistake after being told "your problem is not caused by your PM."

I too had a problem with my first pacemaker that took several years to get fixed. While it wasn't life threatening as yours was it was what I call life consuming. Mine was shocking the hell out of me and it pretty well stopped my wife and me from doing anything away from our home except those things absolutely necessary. So I have a little idea of what you went through although mine certainly was not as painful as yours.

Good luck to you.

Smitty

Not routine

by KeithB - 2011-11-09 01:11:57

Smitty,

You are totally correct. PM implants are NOT routine. I am a month post-implant and everyday since the implant has been a living nightmare. The worst part is when they tell you all the things that you feel are "impossible." Then there is a complete denial that anything could possibly be wrong with your implant. First, within a few days of my implant my side was actually having a spasm which was visible (they told me that it was impossible for the PM to cause it, yet when the medtronic guy made some "adjustments" it went away. Now, when I ride in a car (bumpy) or walk, I can feel that my heart is reacting to the PM and I start getting light-headed, my chest hurts I feel as though my heart is fluttering...I called the cardio doc and she told me as long is it wasn't happening while I was sitting, then it was ok...seriously? I called yesterday and office nurse wouldn't even return my call. Basically, the doctor makes you feel as though the problem is in your head. It's like the cardio doc is offended. So now I really need to get back to work but I can't stand the road trip and walk to the office...I gotta get this thing fixed and I suppose I need to change doctors...I'm just afraid that all offices are like this place (an assembly-line). Truthfully, I think the docs are so desensatized they really could care less if you lived or died. I can only imagine the amount of money the cardiologist has made from all the diagnostics and surgery on me and yet they wouldn't even return a call...just sad.

Keith

Oh my lord......

by Pookie - 2011-11-10 09:11:01

I feel like screaming......your stories sound much the same as mine except mine didn’t involve pain other than emotional pain. Well I did have excruiating pain the first 2 days when one of my leads did perforate the heart wall, heart sac then completely filled with blood, coded not once, but twice!!!, then emergency surgery to take the blood out so my heart could beat, then another surgery to fix the lead that fell, then yet another cuz it fell yet again (this was all within 10 days) then 5 months later = surgery #5 as my pacer decided to go hibernate in my armpit. I thought that after ALL of that I might start to feel human - oh no - I felt like crap for the next 5 and a half years and I, like you, kept getting the same answers like "the Pacer can’t possibly make you feel like that or it’s all in your head", etc.

Then 2 yrs (this April) I went in for my usual 6 month interrogation and one of the PM Techs just happened to have come back from Minnesota where she was sent for a "refresher" course with Medtronics......long story short, she was SO happy to see me (which really confused me to say the least) and she was almost bursting with excitement to tell me what she had learned - all the while I was thinking: "oh, for crying out loud you guys, I’ve been complaining for 4 yrs now and you’ve never once listened to me" BUT.....she had learned that in some patients that the Optimization setting (in rare cases) should be turned OFF, so she excitedly turned mine OFF, which is part of the Rate Response, and IMMEDIATELY I had my life back.

One little setting all those years - oh I could cry just thinking about it - totally ruined my life.

I was never a giver-upper, and anyone on here that knows me knows I always tell everyone to never ever ever give up hope. I didn’t, and finally it worked out for me, so I guess your situation isn’t that different from mine meaning: there is an answer to your problem, you just have to find it and never give up hope - ever.

I too was sent to the Mayo in Rochester back in 2007 and they didn’t find anything wrong with my pacemaker, I just came out with quite a few new diagnosis, some of which I still don’t quite believe, which is another Oprah show.

I guess we have to remember that the medical profession is made up of people, just people, and some are there because they care and some are there because they like the big fat pay cheques they get.

Gosh, I could ramble on & on, but I’ll stop here.

Keep pushing the doctors until you get an answer.

...and keep us up to date....OK?

Take care,
Pookie

You know you're wired when...

Your kids call you Cyborg.

Member Quotes

I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.