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Hi. I'm new to the site and honestly just a little lost. I had my first pacemaker device implanted when I was 3 and I am currently on my my fifth PM. My fifth is reaching it's end of the life soon (I think... I'm frustrated with the doctors), and soon it will be time for the sixth (within the year). I

I feel like at times my doctors are not listening to me, and I'm lost as to how to deal with them.

Also, I get really really bad pain around my collarbone all the time. Something my doctor has kind of determined is phantom pain due to the fact that they have cut into the nerves so many times into that area. They say they basically can't help me with it. Any one else experience this?

Thanks!

Sorry for the life story!

4 Comments

Pain in your collar bone

by Bemarie53 - 2014-02-08 01:02:36

I had my first two pacemakers implanted below the collar bone. The first one I clotted, so they moved it to the other side, again I clotted. Now my pacemaker is in my abdominal area and I wouldn't have it any other way now, I don't even know it's there. My wires r attached to the outside of my heart, upper and lower chamber. I am completely dependent on it. I. Have had a pacemaker since I was about 40-45 years old and now I am 60. Next Wednesday I will have surgery to have my wires replaced by a thoracic surgeon, he has done all my surgeries. I am very active, ride horses, rope, love the out doors but since my wires r worn out, they r 15 years old, I am tired and it has really slowed me down. Although the epicardial pacemaker surgery is painful, only for about 4 days and then it is great. You may want to consider the epicardial. By the way I have a Medtronic dual chamber pacemaker.
Hope everything works out for u.

New Site

by tinman1988 - 2014-02-08 01:02:37

The doctors have discussed moving my pacemaker down to my abdomen. I got try first PM at 3 and have always had by my left collarbone. The skin has become so thin and with all my pain, they've talked about moving it. However, I'm 25 and planning to start a family very very soon. If they move to my abdomen, can it cause complications down there when I become pregnant?

Also, has anyone else had this many pacemakers in these amount of time? Basically 6 in about 22 years?

pain

by judyblue - 2014-02-08 10:02:39

thank you both for sharing. I have been told to deal with my pain, so any information I can get is hopeful. (something i have very little of today)
judy

Alternate doctor

by Theknotguy - 2014-02-08 10:02:49

I had the pain in the collar bone area too. Also a lot of pain in my shoulder I busted up quite a few years ago. Guess the pounding on me during CPR didn't help.

Started rehab and had a lot of shoulder pain. Cardio rehab nurse suggested I go to therapy for the shoulder. Sports doctors treat patients and only resort to the knife when everything else fails.

Expected rehab on the shoulder to be - no pain, no gain. So wasn't looking forward to it. Rehab person had me do exercises but no major pain. He said if it hurts you won't do it. If you don't exercise you won't get better. Hmmmm. A voice of reason among the babble of misinformation.

Reason why I relate this to you is to suggest you go to a different doctor and tell about your pain. Unfortunately doctors live in silos and get very good in their area of expertise but know almost nothing outside of it. So your cardio guy probably isn't doing anything about your pain because it's outside his area. Also, in Ohio, there are some very severe penalties for doctors if they start handing out pain medication. So you've got some very thick walls to batter through when you start talking about pain and pain meds.

The reason why I suggest a sports doctor is they are accustomed to working with people with chronic pain. They have alternate ways of dealing with pain other than pain meds. Also their goal is to reduce your pain and get you moving. The sports doctor I saw acknowledged my pain, did x-rays, and then had me evaluated by a rehab person. The most I needed was Tylenol after I got through the shoulder rehab exercises.

Hope you can find some help.

Theknotguy

You know you're wired when...

Your device acts like a police scanner.

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