Has anyone received Social Security

I was born with a heart condition (hole in my heart). My heart was damaged when I was 18 months old when the doctor repaired the hole. This caused me to have a total heart block at which time a pacemaker was inserted but the battery pack was outside of my body. After several weeks the pacemaker was implanted inside the skin in the lower left abdomen. I had many pacemaker malfunctions, wires breaking, corroding, and getting short. I had temporary pacemakers at least 7 and many permanent pacemakers implanted. I have had surgeries that were over 7 hours long to move the battery pack under my arm. I have had complications with each pacemaker causing chest pains, skipped heartbeats, fluttering, dizzy spells, fainting spells, and crazy heart rates. I have had my heart beat 30 times a minute and 175 times a minute. Social Security says that wearing a pacemaker is not a disability but I have been fighting to have a normal life all of my life. This pacemaker has been acting crazy since I had it implanted. I spend all of my money convincing people that the pacemaker is crazy but they send you home with an o well look on their face. Since they have implanted this pacemaker I would wake up in the middle of the night feeling like my heart was beating out of control. It was like I was being startled in my sleep. It got to the point that it was racing up to 175 times a minute causing my head to feel like it was going to explode. I finally went to the clinic and demanded that they turn off the feature that runs a check on your pacemaker/heart in the middle of the night. A kid told me that I would die if they turned that feature off. I said o well at least I would not feel like I was dieing in my sleep. I found out that my last two pacemakers had this feature on it. That would explain why I had chest pains with the last pacemakers with a sensation of having a panic attack feeling like my heart was shaking in my chest. I spent four years feeling like the pacemaker was shocking my heart so hard it was causing pain. Nevertheless they shut the check feature off that incidentally was not only waking me up in the middle of the night it was bumping the pacemaker up to a higher voltage because the computer decided that my heart needed more energy to beat. Therefore, on top of everything else that was happening I was having chest pains, my heart was beating so hard I could see my shirt move and physically feel my body beat, and my neck on both sides was hurting. It is not my physical shape that is going to kill me it is the pacemaker and the people who adjust the pacemaker. Also, I found that they had activity turned on when I did not need it accounting for 21 years of multiple problems making me feel like I was dieing and at times wanting to get this over with. Everything is turned off and since November of this year I was fine until all of the sudden I started having skipped heartbeats. I do not know what is causing them but I think maybe it is stress related.
I want to know if anyone has had the same episodes happen to them due to wearing a medtronic pacemaker. I think this is a malfunction and it could kill someone.
Trying for disability I can not work and spend day after day trying to convince these people that the pacemaker is set wrong causing me to wake up all night long, chest pains, heart to get out of control, stress, anxiety attacks induced by pacemaker and the list can go on and on.

7 Comments

I forgot to answer.....

by Pookie - 2012-05-31 08:05:34

you asked about Social Security, however, I live in Canada and our "rules" are so different. Bottom line is, in my opinion, is this: if you can convince them that your quality of life has diminished and prove to them that you can no longer do certain tasks...I think that is what SS is looking for.

Best of luck,
Pookie

Wow

by Pookie - 2012-05-31 08:05:52

I am so sorry to hear about the hell you have been going thru. I too went thru something similar but not to the same extent and mine only went on for almost 6 yrs UNTIL I finally found an EP who listened to me and with one (yes - one) setting adjustment = I got my life back.

My particular problem (and fix) was in the Rate Response feature. I also have a Medtronic (Enpulse) since 2004. The fix was this: they simply turned OFF the Optimization.

I'm not saying I feel 100% 100% of the time, but it sure made a difference in my life...now I am living, not merely existing.

So, I guess what I'm trying to say is this: instead of trying to convince your present "staff" to listen to your concerns; is there any way you can get a new set of eyes (via a 2nd opinion) to take a look at your settings?

Another thought: have you ever had a Medtronic Rep present while having your PM interrogated???

Pookie

get a lawyer

by brokenheart - 2012-06-01 01:06:47

I can definitely relate to a lot of what you are going tru. I have been tru a lot of that including having doctors mess up my ablation and giving me complete heart block and inserting a pacemaker as a result. I have had dizzy spells, fainting, low and high blood pressure, skipped beats, fast and very slow beats and even had problems sleeping because my heart rate was so fast and pumping so hard it would wake me up at night. So members here suggested i tell my doc and he changed my night mode for my heart rate to drop to 55 at a certain time. That really helped me sleep better along with taking a higher dose of beta blocker in the evening. I also got my social security denied the first time, so after that i got a lawyer and i was approved in less than a year. Most lawyers dont charge you anything unless you win. HOpe this helps. God bless.

Probably atrial tachycardia?

by golden_snitch - 2012-06-01 03:06:25

Hi!

I have had a Medtronic pacer for seven years before I got my current model. Never had problems like these. I do know that some of the tests the pacer does can be a bit uncomfortable; also have experienced many problems with settings (especially rate response); and have had 6 pacer surgeries in 11 years due to complications (also had an open-heart surgery). So, I can a little bit relate to your struggling with the pacer for so many years. It definitely sucks. But after all, the pacer is improving my quality of life, because without it I'd be running around with a very low heart rate - guess I could not even run around.

As for the heart rate speeding up to 175bpm at night, are you sure it's caused by the pacer? Has it been recorded by ECG? Just asking because congenital heart disease patients who underwent open-heart surgery tend to develop tachycardias; they are caused by the scar tissue from surgery. So, it would be important to document what's going on, and to find out if it's really the pacer causing these high heart rates or if it's your heart. Given the fact that you have heart block, and the pacer should only follow what the sinus node in the right atrium is doing, I'd not expect the pacer is causing the tachycardia. I'd guess you are having some kind of atrial tachycardia, and then the ventricular pacer lead just follows that rhythm.

You said that since November things have been fine - ever since all those features, checks etc. were turned off - except for some skipped beats. Few sentences later you say that you are trying for disability because of pacer waking you up all night, chest pains, heart out of control and so on. So, you are not fine despite the features turned off? Sorry, but this is a little bit confusing...
Here in Germany there is no way of getting disability because of a pacemaker. They can give 0% - 10% disability for that, but even the 10% won't make any difference.
I understand that you have had many, many problems with it, but what I also understood is what I already said: that you have been fine since November. So, why trying for disability now?

My personal experience is that work, no matter what kind, is good to take your mind off of things. I'm working part-time at the moment which is good because I struggle with quite a lot of arrhythmias and do feel that working full-time would be too much. But it's great to have that part-time job; to get out of the house every day; meet my colleagues; think of something else. Without that job, I'd probably end up sitting at home being depressed and thinking a lot about all my heart issues.

Don't know if this helps at all. I just wanted to say that CHD patients often develop some kind of arrhythmia, especially tachycardia, so that some of the problems you have might not be caused by the pacer.

I went to Binder and Binder.

by kathykat11 - 2012-06-01 05:06:52

Social security put my disability back to the last day I worked. this is not and advertisement for Binder and Binder when I had them working for me all they did was SSDI cases they are now doing class action bad drug suits, so I can't speak to haw they are doing now. I was turned down twice. and acceppted on exactly the same information so I think they have a system where they turn you down enough time so the lawyer earnes there fee. the fee is based in the amount you are awarded from retro active date social security assigns to you. not he date you actually became disabled and the amount the attorneys can charge is i/4 mof the amount awarded to you after the first five months are disallowed everyone loses the first five months. my attorneys were paid nearly 800.00 and I got a bit over 2000.00 I got my retro active about 6 months after I was told my case had been approved. 30 months after you are approved you become eligible for medicaid. My military coverage runs out August 15th so I will have a goodly amount of time with no coverage. I take coumadin so i will have to eat my cardio bills but I havent been getting heart surgeries since 1972 to give up over money.
Hope this info helps with SSDI.
BTW Binder @Binder does the whole shebang by phone and mail so non driving me could do my part easily.

social security

by manaman - 2012-06-01 09:06:11

First off let me say I can relate in some ways BUT as my heart doctor and my EP staed when PM was put in nearly 20 years ago " You are not getting this to take you OUt OF work BUT MAKE SURE THAT YOU CONTINUE TO WORK!). At first I sort of tried to challenge the issue (looking for disability) and I nitpicked every little problem I had and tried to link it to the PM. I even tried the "look at little old me, I have a PM and cannot do what I used to do" Then someone told me I could not do something (THAT I REALLY WANTED TO DO) because of the PM. This changed my out look and my life forever! I lost weight, started exercising, stopped smoking and watched my diet but MOST OF ALL I stopped feeling sorry for myself. Life has not been the same since. I have a broken wire on the ventrical lead (have known it since December 2011).Does it concern me? YES! Does it bother me? NOPE! At times it is a bit annoying and uncomfortable but I treat it as all the other aches/pains that go with life.
If you are over weight, then loose weight. If you smoke then stop. If you don't work find a job or do volunteer work. I think I would concentrate on finding ANOTHER source for fixing your problem (what ever it is) Put more effort into feeling better and functioning better other than looking to receive SS! SELF PITTY will NEVER fix either of you goals be it to get better ot to get on SS

The best thing is

by walkerd - 2012-06-02 07:06:15

to follow excatly what the guidelines lay out. Go to the ssd website and read it, and like I said follow it excatly. check the illnesses for heart related acceptable reasons, and make sure your doctor is going to go along with it, if they dont give you a good workup for ssd your going to have a hard time, and dont file before the time line states or failure to do the above you will probably need a lawyer and they make sure they get thier cut of your payout, and Im here to tell you it is culture shock trying to make it on ssd after youve worked all your life and brought home a good paycheck but its better than nothing. After reading some of the horror stories with other people had getting it I guess Im one of the lucky ones that followed the guidlines and got approved. But hey my doctor told me I couldnt work. I know people on ssd that really shouldnt be but got it. FOLLOW THE GUIDELINES SET UP ON THEIR WEBSITE!!!!! I cant stress that enough.

good luck
dave

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Sometimes a device must be tuned a few times before it is right. My cardiologist said it is like fine tuning a car.