I am constanly trying to prove I am not a hypochondriac to my cardiologist. I have had a pacemaker but for the last year and a half I have had a constant pain surrounding my medtronic kappa 901 pacemaker. I have a tight pain and shooting pains in my left arm and in my left back side. I don't know what to do, because my cardio just says it is in my head and that it isn't "normal" to have pains like this. I often start to have a constriction in my chest and and I get really dizzy from it. Can you please help me, any information will help. thank you.

 

 

Hi urlilheartdefect:
I'm sorry to hear you've been living with chronic pain for a year and a half and getting no help from your doctor. I cannot tell you what is causing your pain, but you need to find another doctor who will help you sort it out. I also had chronic pain after my implant and was able to get rid of it by seeking treatment from 3 other doctors over the one-year period following my implant. I am now completely pain-free. Nothing was wrong with my pacemaker -- it was functioning perfectly.

Your sources of pain may be completely different than mine -- I had three. I developed a hypertrophic scar (or keloid) which was extremely painful and itchy. That was treated by a dermatologist with kenalog injections once a month for two months. My pacemaker was implanted too close to my shoulder and I had pain every time I moved my arm in certain ways, so I had the PM re-positioned by a General Surgeon 6 months after the original implant. I had nerve pain in the entire area around the PM and shooting pains. I saw a plastic surgeon who told me how to treat that with vibration therapy (actually using a vibrator on the area to re-train the nerves to send vibration messages to the brain, not pain messages -- like the kind of pain people have following an amputation) and the pain was gone in three weeks, though the vibration therapy took 3 months to make the pain relief permanent. I was fortunate that my Electrophysiologist believed my pain was real, even though he had no clue how to fix it, so he kept referring me to other doctors who could help me solve each one. If you trust your doctor and think he/she really wants to help, print out this message, show it to him and ask him what other doctors he would recommend who might help you. If not, find other doctors on your own and keep working to solve the mystery. Living with chronic pain should NOT be one of the side-effects of getting a pacemaker. I was unwilling to put up with it, and 18 months later I am pain-free and back to running, biking, kayaking, and hiking.

Your sources of pain could be many different things, so it's important you find a doctor who is good at diagnostics. I was very surprised a plastic surgeon was able to help me with the most elusive pain I had, so keep open-minded about what may work for you.

Take care and please keep us posted on how you solve this, CathrynB

 

I think that you should get a second opinion. I had a cardiologist that acted like I was making all of my symptoms up and that there was nothing really wrong with me. He did not think that it was possible for anything to be wrong with my heart because I was so young. He decided that I needed to have a halter montior for One month. I am severly allergic to adhesive so this was very pain full. When I told him about my allergy and how it affected my skin his responce was " Oh well the scars will fade eventually" After that comment I fired him and got a second and third opinion. I am now the proud owner of a PM. My one Cardiologist told me that I could have died without the PM.
I think that if your pain is that severe you need to continue to go to the doctor until you get some answers. And if your doctor is blowing you off then you need to get a second opinion. I hope you figure everything out and that you get well soon.


Britt<3

 

Hello,

I have to agree with your cardiologist that pain like you describe is not normal. And I'll even say thank goodness about it not being normal for the rest of us. Something else that I think is not normal is for your doctor to be so flippant about your pain. One of the reasons we go to doctors is because we have pain, and for one to tell a patient it is in their head (even if he is 100% correct) is, in my opinion, unconscionable.

My suggestion is find yourself another doctor if at all possible.

Whether it is your pacemaker or not is impossible for me to guess, but I will say from my experience with one of the little jewels, I am convinced anything impossible. I went through almost three years of hell with pain I kept saying was caused by mine and the pacemaker people kept saying it is not you PM. Finally, I reached the point that I sad turn it off. I knew I was not PM dependant and the worst thing that was going to happen was I would feel very poorly without it helping maintain an optimum heart rhythm. As it turned out the only thing that happened was my pain stopped. A couple of years later ad different cardiologist thought it should be restarted due to my shortness of breath complaint. The PM didn't help the SOB but my pain returned. However, this Cardiologist, with the help of other doctors finally determined that my pain was indirectly caused by the PM.

Apparently what was happening to me was stray electrical impulses from the lead to the ventricle was triggering a bad case of shingles. A thoracic injection to deaden the affected nerves solve the pain problem. I just got the final report on all this as one of the doctors is having a paper published on my problem and sent me a copy now that is has been accepted for publication. So far as they can determine it is a first.

I tell you all this, I guess as a way emphasize my belief that a pacemaker can cause problems our doctors have not heard of and too many of them find it easier to say "it is not your PM, rather than try to find out. I think the many postings here from people with similar problems will verify that.

I wish you the best.

Smitty

 

The important thing to realize is that you are experiencing pain and that you are feeling dizzy. It may be in your head, but so what! Actually, all pain is is our heads..the brain interprets nerve signals and gives us the sensation of pain.
Having the pain radiate into your side and back plus feeling light headed should be of concern to the cardiologist. That usually is an indication of some sort of abnormal sequencing of the heart chambers resulting in low heart output. The other possibility is that the pacemaker is pressing on a nerve and the pain makes you anxious causing the light headedness.
It sounds like in your situation there isn't $$ to be made evaluating your problem so the docs just want to find a quick way out of dealing with you. My suggestion is to write the cardiologist a letter stating your symptoms and asking for a written diagnosis. This puts the cardio in the position of being liable if something more serious develops. It isn't that you want something to happen, but rather to worry him a bit that there is a written record out there. Also, do you have a copy of your pre and post checkup printouts? ALWAYS, get a copy.

frank

 

I would just reall ylike to thank al lof you for your help and imput...

<3urlilheartdefect...