remove the icd and cap the lead
My Medtronics ICD and sprint Fidelis lead scares the heck out of me. Has anyone had the device removed and the leads capped? Should a patient's mental well-being be a consideration in his therapy?
14 Comments
Thanks
by erkmeier - 2010-03-16 09:03:11
Please read the question before trying to answer it. I don't have a pacemaker. I have an ICD. I'm as familiar with computers as the next person having taught computers for a major corporation.
Do you have an answer for my question? if not, thanks anyway for your input.
ICD removal
by erkmeier - 2010-03-16 10:03:02
Has anyone had the device removed and the leads capped? Should a patient's mental well-being be a consideration in his therapy?
ICD removal
by cbaker - 2010-03-17 01:03:14
erkmeier, an ICD is a case of the cure sometimes being worse than the disease, so I don't doubt that people have had theirs explanted and the leads capped. Those people might not stay on forums like these, but you might hear from one of them.
As I thought about yanking mine, I did consider whether it might impact my insurance coverage, i.e. give the insurer grounds to deny future coverage or drop me (weirder things have happened). It would be optimal if you could enlist your cardio as an ally in the process, of course, so although they are probably more likely to advise against removal, still worth a shot, at least for a second opinion. Of course your mental well-being counts; it's a pity that cardios and EPs are so unable to deal with (or forewarn patients about) the huge mental issues that ICDs create. Otherwise, hey, it's a fabulous technology, right?
An option to explanting is that you could have the defib function turned off and leave the device in, at least as in interim measure (and might be more easy to get an EP to do).
And then there's donut magnets.
Good luck.
wowwww
by walkerd - 2010-03-17 06:03:23
no ive never had mine removed or capped, nor would I even consider it, my pm/defib are in for good because I would like to live a little longer, I have a medtronic with the sprint fidelas leads, the only thing thats scared me was of the reason I had to have it in the first place. Why are you so scared i mean i understand to a point why you are scared but to have it removed??????? And Im far from an intellect.......
dave
Scared
by J.B. - 2010-03-17 12:03:19
I beg your pardon. I didn't know I was speaking to such an intellect.
But for your information here at the Pacemaker Club, ICD can mean implantable cardioverter defibrillator or implantable cardio device (pacemaker). Pacemakers are by far the most common device asked about here and since you didn't specify what you had how in the hell was I to know. As for your smart ass reply "Please read the question before trying to answer it" you can bet it will be two days after hell freezes over before I will even read another of your messages.
Maybe you should read a little more of what is most often discussed here before posting a message. Do that and you might also learn that sarcasm gets you nowhere.
I still wonder whaty you are scared of.
Hi
by Pookie - 2010-03-19 03:03:31
Just curious as to why you are scared....you really didn't explain.
Yes, there has been a few members on here that I know of that have had their devices out.
And Yes, regardless if you're getting a heart device in, or having one extracted, it is just my opinion, but every heart patient should have access to therapy.
Unfortunately, all hospitals don't offer it or you have to go find a psychologist or psychiatrist on your own and spend money out of pocket...again, it all depends on where you live too.
Some companies have an EAP Program...Employee Assistance Program where you can speak with a therapist for free. And again, there are always support groups out there, it all depends on what you're looking for, what you are comfortable with, and where you live.
But please do take the time to explain to us why you are scared, perhaps we could be of some help???
Best of luck & take care,
Pookie
What scared me
by agilitydog - 2010-03-19 05:03:01
Was going into v-tach at 65 mph on the highway for 13 seconds. Fortunately I self-converted just before blacking out.
I thank GOD for my Medtronic ICD and leads.
Sprint Fidelis Leads
by MRSNO1MAX - 2010-03-21 03:03:14
I had the bad leads removed in 2008. I was afraid but I had a great doctor and did ok. The one lead came undone and pierced my heart. My prayers to you.
Same thing
by cjinto - 2010-03-22 06:03:51
Yes I do think that your mental as well as body needs to be in good working order to deal with this. I too had bad leads from medtronic and had my leads and icd removed two weeks ago. This Friday I go back in to have my fifteen percent smaller and more efficient. I am really nervious, but I hope everything goes well with you, Colleen
Spint Fidelis Leads
by roy haycock - 2010-04-05 09:04:09
I too have a Medtronic ICD and Spint Fidelis lead. They were put in 3 months before the lead was recognised to be potentially faulty.
That was nearly three years ago and I have recently been told that I am now 100% dependent on my PM/ ICD !.
Some 5 years ago I had a lead which developed an intermittent fault and it was found to have cracked , so it had to be removed after about 7 years being in place.
I too am now scared that the Sprint F will crack as I realise that this could well result in fairly immediate death, so I understand how you feel.
I have decided to see my consultant soon to get his advice on whether to have the lead removed and replaced. I know that he is fully aware of the risks involved and would rather not have to do it, but it will be my decision whether to go ahead with it.
What I do not know is whether there have been many failures with that lead so far and if the frequency is rising or declinig, so if anyone knows the answer please post it .
It is a scary feeling, but as I have passed my thee score years and ten, and have had 10 years extra time due to my PM/ICD, I do not feel that I have too much to be worried about really.
I hope to be able to let you know what happens.
Roy H
Pacemaker/Defibrillator replacement
by albell - 2010-08-19 02:08:00
My husband had his pacemaker/defibrillator put in five years ago, about two months ago, we were in bed, I was waking up for some reason when he suddenly set up with a loud noise, I saw him put his hand to his chest. It had really scared him, his defibrillator had just gone off. We called the doctor and went in the next day, they ran a lot of test, bottom line: lead had cracked. We saw the cardiologist a few weeks later and he recommended removing it and installing a new one. I asked if he would be removing the lead and he said it was too dangerous to do that so what they would do is cap the lead, put a new lead in a different vein, and reinstall a new pacemaker/defibrillator.
The day of the surgery, there was a man in a doctors coat who stopped by and spoke with us. It turned out his company made this product. To cut through all his bull***, he told us any out of pocket money we spent, up to $1200, they would cover.
After he left I told my husband, They are scared of a lawsuit, something was wrong with your pacemaker's leads. I said we aren't taking any of their money. We may need to sue later.
My husband's doctor's visits and surgery, etc. cost well over $100,000 that our triple insurances paid. He had medicare, tricare, and blue cross.
I am seriously considering contacting them to make the company reimburse them for the cost. I could not believe they wanted to give us up to $1200. My husband is almost 70. He did not need to be put back to sleep again, to have another surgery, and have a few months of recuperation.
I am angry at the company for not notifying us, a little mad at our doctor for not telling us there had been problems with this pacemake/defibrillator.
We were not given the option to have another brand put back in my husbands chest. We should have been given that option. Why would you use the same product that had failed already. Don't you feel we should have been given the opportunity to make that decision?
Alice C.
Thankful
by albell - 2010-08-19 03:08:27
We are very thankful for my husband's pacemaker/defibrillator. We live more than 30 minutes to the closest hospital. The closest ambulance is 15 minutes away.
This devise could one day make the difference between my husband living or dying. And no matter how much it scares you sir, you should feel that same way.
That, yes, it could cause you to have a wreck or fall down a flight of stairs, etc. But chances are that that won't happen. Being Zapped scares the *** out of you, but it only last for a second. You probably would not lose control of your car, you probably would recover fast enough to keep frorm falling down the stairs. But without it, there might not be any hope of your survival. You might die rather than be zapped. Of course, the choice is yours.
God Bless.
Alice C.
The Thankful Fool?
by LiquidSunShine - 2012-01-31 01:01:44
Don't be thankful when a badly designed and manufactured device may be more likely to kill you than the supposed threat it is meant to mitigate.
The St Jude Riata leads are truly mess and true scandal. Nobody knows how bad they are, but they do know the more they look the worse it gets. Check out the 20Jan2012 Riata Summit presentations at http://www.mplsheart.org/riata-agenda. Don't take 'PR for Patents' or talking down to you by the physician seriously, rather go right to the source. Bottom line: these are the worst leads on the market, becoming obviously dangerous with every report, and so badly designed they are high risk to remove.
Also they are implanting a huge number of ICD prophetically (maybe you need one, maybe you don't) . If the devices go off for inappropriate reasons (at least 1/3 do), you have a 400% increased chance of death down the road. This hold even if the device also fires appropriately. The Risk-Risk analysis is only beginning now, which is shocking, so to speak.
My history includes 3 inappropriate shocking episodes from afib, plus one horrendous multiple shock episode from a cracked Riata lead and failure to reliability suppress by magnet due to faulty reed switch. Now I find out the Riata lead has multiple ways to harm and kill as it fails further, I have only encountered one of them so far. The lead is badly designed (obviously manufactured as well) because the shock lead has bare metal that make extraction much more dangerous. If only I had the Sprint Fedlis which had a complete silicon sheath. The Riata scandal is far worse.
I am willing to die naturally, but I resent being killed by bad technology, poor design, substandard software, and lousy manufacturing clinically deployed by people who received kickbacks as documented by DOJ settlements with the manufacturers. So think twice about getting into this mess, if you have ST Jude device you have checked into the Hotel California of medical devices - steely beast of lead wire and all.
You know you're wired when...
Friends call you the bionic man.
Member Quotes
I have an ICD which is both a pacer/defib. I have no problems with mine and it has saved my life.
Scared Of Pacemaker
by J.B. - 2010-03-16 08:03:16
I have to ask, why did you get the pacemaker? What about the pacemaker and its leads scare you?
The pacemaker is not much more than a small computer sitting there idling along waiting for your heart rate to drop to an unacceptable level and it then steps in and keeps you going.
If you really needed the pacemaker I would think you would be more scared if you did not have it. But lots of people do have them removed for various reasons. The leads may or may not be removed at the same time. If they have been in place for any length of time it is sometimes less risky to just leave them (and the pacemaker) than to remove them.