feeling down......

I got my ICD implanted in April of 2008 and have had nothing but pain from it. I just went to another Doctor for a second opinion about my ICD because it has moved down into my armpit area and it hurts me to reach my left arm over my shoulder because it moves all the way up and over my clavicle bone. My Doc didn't suture it down obviously and seems to think if I try to wait until April of next year that it might feel better and then we can talk about relocating it. He thinks my pocket is too big because I had 3 surgeries in the beginning for a revision and an extraction. I can't go one single day without something hurting inside there. Folding laundry hurts, washing my hair, driving with my left arm elevated, sleeping on my left side.......and the list could go on. I work on an assembly line doing the same thing for 8 hrs straight and can't imagine going back to work while I can't even do normal day to day things. I'm just so frustrated after seeing that other Doctor he referred to my Doctor by his first name and totally agreed with basically what he said. Just to hang in there and wait it out. I started having svt or afib episodes on Dec 29th of last year and had a few episodes each month until my last one on April 9th of this year. My heart rate would elevate up into the 200's. I had the stress test and echos and all of those fun tests and they couldn't seem to find anything wrong with me and I wore a holter monitor for 2 weeks in March/April and they found nothing. They referred me to an EP specialist on the 14th of April and by the 18th I had my ICD. They did an EP study on me and had a hard time getting me to go into svt until they gave me some Isoproterenol into my iv during the study and it finally caused the svt. I had a cardiac mri to check me for HCM because my father has hypertrophic obstructive cardio myopathy and in my medical records that I have been reading it says it is a "possibility" that I might have it so that makes me wonder even more. I have asked other questions for my Doctor and this new one too as if I even needed the ICD to begin with. I have been asking about a diet pill I had been taking around two months and wondered if that could of stayed into my system for a while causing me to have those episodes. I stopped taking the pills in the end of January after that had happened to me twice. I was 35 and very healthy(just slightly chubby LOL) with no health problems so it was just a simple question and they seemed to just say "NO I don't think so." I researched the Isoproterenol and found that it is in diet pills so it raised a question in my mind. I have had my ICD now for 7 months and am not on any meds just an aspirin a day and have had no episodes (not that I want it to fire lol) I just feel that it is odd with no heart meds to prevent it and I have been exercising and haven't had any problems with an elevated heart rate. I'm just frustrated and wondering if any of you guys have any suggestions or words of wisdom :) Thanks for letting me vent! ~Sis

7 Comments

hi sis

by jessie - 2008-11-20 04:11:24

if you can get another opinion get it because none of this seems right to me. also listen to cabage patch and frank re advice on this. it isn't right. you also should not have to pay for god sakes . you area young woman. jessie

Sis

by Pookie - 2008-11-20 04:11:29

Hey girl.

Sorry I keep missing you on Yahoo.

Find a cardiologist who is willing to reposition your ICD because it shouldn't be flopping around and causing you pain.!!! Yes, it will be yet another surgery, but I too had mine move to my armpit but now that it is stitched down in the proper place, it doesn't bother me at all anymore.

Basically you gotta find someone willing to listen to you and do something about it.

Keep you chin up and keep pushing the doctor ...remember: the squeaky wheel gets the grease!

Pookie

PM Problems

by SMITTY - 2008-11-20 05:11:40

Hello Sis,

I'm really sorry to see yuou have so many problems with your new pacemaker. I'm of the opinion that no one should ever hurt more than a few weeks, at the most, from a pacemaker implant. Anything more than that, except in very rare cases, something is wrong and it can be corrected if the doctor knows sheep dip from wild honey about what he is doing.

So, I agree with the others, you need another opinion and my recommendation is that you get this one from an attorney. From what you say you definitely are a victim of poor surgical skills. Maybe a good attorney can arm you with enough ammo to make some incompetent and lazy a-- doctor see that his mistakes are corrected.

Good luck,

Smitty

another doctor

by lb151 - 2008-11-20 06:11:38

You really do need to seek another doctors opinion. I know that is harder to do than say. I had trouble with my device,which was implanted in April also. I had bulging leads and every morning I had to reposition it. I was going to have heart surgery anyway so while I was at Duke I had then fix my defib. Now its under the muscle sewn in a nice pocket. Try and find someone that does it all the time or a large medical center. Ask lots of questions about where they are going to move it and what procedure will be done. I feel I didnt do my homework the first time around but my head was spinning at the mere thought of it all.
Good luck

Sis..

by turboz24 - 2008-11-20 06:11:46

Sis, you mentioned to me that you were having issues with your ICD and it moving around. I would have it dealt with as soon as possible, it's not going to improve since it's already moved. I have no idea why any EP would not use the sucture hole, I asked my EP and he basically said "they are basically being lazy".

I would add that occassional pain from the device is something you might have to expect, but it should not be painful most of the time, maybe a jab or 2 every so often, but nothing constant. My EP did say that some discomfort/pain is actually decently common, but not constant pain.

thanks

by sis - 2008-11-20 11:11:23

Thanks a lot for all your suggestions I am starting my hunt for yet another Doctor's fine opinion.....This time I'm going to make sure its not in the same town! I'm in Southern Michigan so I might look into Ohio or Indiana. I do have a printout of my last interrogation and I will message electric frank to ask him to help me out with that :) And yes I had a bad feeling at the begining of this whole thing when I was getting another surgery a week after getting it implanted because the lead "preferrated through my heart" guess that should of been my first clue to run......but two weeks after that I was having burning contractions on my whole left side of my chest plugged to an iv with morphine with a doctor saying running test after test on me saying "I don't know what is causing this pain, the only thing I can think to do is take the lead out and put in a new one and send it back to St Jude to see if it might be a deffective lead" well I was fine after they took it out and I never did find out if the stupid lead was deffective or not!! And yes, I ask every visit............*sigh* it's just been a long overwhelming year is all I have to say! I sure hope the new year is a better one!! Thanks again everyone. I was having a stressed out day feeling down and finally decided to post a message to ask for some advice :) It's great to have a little pm/icd family to come to when ya need it :)

Two issues

by ElectricFrank - 2008-11-22 12:11:00

It sounds like you have two issues to deal with. One is the moving pacemaker, which should not be happening. There is no reason to expect the unsutured device get any better in another 6 months. My suspicion is that he wants to delay the surgery for a year from implant and probably can then charge the insurance company for the repair.

The second issue is whether you need the pacemaker/ICD. It is possible that the pacemaker is performing some sort of activity that is helping you even if the ICD part of the device isn't firing. Look at the report from your last checkup and see if you can find the following items:

Mode: (will usually be letters like DDD, or DDDR)
Percent Paced: (Will show a percentage for both atrium and ventricles)
Rate Response: OFF or ON

Start with these and let me know what you find. I'm not as familiar with the ICD devices so some of the readings may have different labels. If anything looks important let me know. You can either post them here or private message to me.

As for fixing the pocket and suture I'm not sure I would trust the doctor you have been dealing with. He did a botched job in the first place so why give him another chance.

I'm sorry you had such a bad experience with the pacemaker. They can be so helpful if done right.

frank

You know you're wired when...

The mortgage on your device is more than your house.

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I had a pacemaker since 2002 and ever since then my life has been a total blessing.