burning

Burning sensation

by AgentX86 - 2021-06-16 22:25:19

Since this isn't a newly implanted pacemaker, it's not likely cut nerves mending but it could be stretching of your scar tissue.  It's really impossible to diagnose over the Internet.

The "leader being clogged" was probably a misunderstanding of a broken, or perhaps, leaky, or similar, lead (not leader).  The "lead" is the wire that connects the box to your heart.  They don't usually get broken, as you might think (broken in half), rather they start leaking or are partially shorted.  This requires a higher voltages to cause the heart to contact, taking more energy out of the battery.  He's likely telling you that the lead needs to be fixed or replaced when they change your generator.

Sensations from implants

by Theknotguy - 2021-06-17 08:03:00

David:

Sometimes you're on the leading edge of technology and sometimes you're on the bleeding edge.  Hard to tell the difference at times.  I'll go with AgentX86 about the leader being clogged.  I also feel he's got it right about cut nerves mending.  So that puts us on the leading/bleeding edge of technology.  

My story....   I survived two rounds of CPR.  Talked with my EP and he pointed out most people who survive two rounds of CPR are living vegetables.  The fact I can carry on a conversation is a miracle in itself and I'm extremely happy for that.  A question on my part....  Quick, tell me how many people you know who have survived one round of CPR let alone two?  I imagine not that many.  That means when I'm talking with my various doctors no one can really tell me what happens after seven years of surviving CPR.  You'll also find there aren't that many people who can tell you what it's like after living with an implanted heart device after it's been implanted since 2009.  

The unfortunate part is that most of the medical people with whom we come into contact are only interested in getting us patched up, immediate needs taken care of, then pushing us out the door.  They aren't interested in long term effects or long term care.  Or as one of my doctors put it when I complained about something, "You're alive aren't you?"  Lots of sympathy/empathy there!  Ah well.  

What they didn't tell me and what no one could tell me was that I'd start having problems with scar tissue, adhesions, and whatever else comes along with that at/about the five year mark.  I saw three different doctors about the pain.  One gave me the "alive" quote, second shrugged his shoulders, and the third said, "You're gonna hurt!"  Thanks for that vote of confidence guys!!!   

Based upon the problems I'm having, and in your case I'd have to go with AgentX86.  It's probably scar tissue or adhesions that are causing your sensations.  May only be an inconvenience for you, may become annoying.  Mine was more than annoying.  

To fix my problem I didn't want to go the pain killer drug route.  At some point they'll tell you they can't give you any more pain killer drugs and then you have several problems.  You still have the pain.  You can't get any more "legal" drugs.  And the problem still isn't solved.  

So I ended up going with one and then later two licensed massage therapists.  Key word is on therapy.  Because of broken ribs from the CPR and scar tissue from a chest tube, they've found a lot of scar tissue/adhesions.  The good thing about the therapy sessions is the cost is less than what I would be paying for pain killer drugs.  I don't have to worry about addiction,  and the therapists are able to suggest stretching exercises to alleviate some of the more painful situations.  I've worked with both to make sure they don't bother my pacemaker implant area or the leads.  Both have said they have a lot of options and getting close to the implant area isn't a problem for them.  One has picked up a second pacemaker patient and is having success working on that patient too.  I usually walk into the therapy sessions looking like a pretzel and walk out standing straight.

Note the other key word was on "licensed" massage therapist.  They've done their schooling on massage therapy and understand how the muscle/bone structure of the body works.  One even went back to their therapy text books to pick up some pointers and that's been successful for me too.  

I've gone on for too long.  Hope something I've said pertains to your situation and that it gives you some ideas for the future. Hope your unit replacement goes well when the time comes.  

burning

by new to pace.... - 2021-06-17 11:20:52

You might try acpuncture also for the scar tissue.

new to pace

Burning discomfort near device

by Gemita - 2021-06-17 11:34:20

David,

I am unclear whether your question is really about a lead problem or the burning.  I will leave the “clogged” lead to your team who you say have discovered a problem and who will no doubt be best placed to answer your question.   As the intermittent burning has been going on for 5 years I feel it is unlikely to be related to a defective lead since a lead problem would have been noticed by now and would in all likelihood have needed correction.  So I believe the burning pain is a separate issue David.

Our bodies react so individually to trauma and although implant of a pacemaker would not be considered a major procedure for most, for some of us, our bodies may overreact and develop complex pain syndromes following implant which can be difficult to manage . . . and to diagnose.  Perhaps you have developed such a complex pain syndrome, even after all these years? These complex pain syndromes can take the form of tingling, burning, stabbing, electric shock-like pain and other symptoms like pulling, tugging sensations.  The pain can be mild or severe, occur suddenly, intermittently and then disappear only to reappear during or following another traumatic event like a heart attack, a stroke or even a minor trauma can throw our nervous system into overdrive, so is it any wonder why our doctors sometimes shrug their shoulders unable to tell us why we are suffering from these pain symptoms.

I see other members have given good advice.   I hope you will realise that it is not straightforward to give a diagnosis for your individual symptoms although we can tell you about our own personal experiences with pain following implant.  

My pain around the implant site still continues intermittently after three years but it is usually over as fast as it appears, so I no longer need regular neuropathic pain medication (Pregabalin) for the burning and other pain symptoms I get, but I do have a diagnosed pain condition:  Complex Regional Pain Syndrome, that started some years ago after a wrist fracture.  This means that even a minor trauma to my body can send my nervous system into overdrive and the resultant pain can be out of proportion to the severity of any injury/trauma.

I see you only get your burning pain symptoms intermittently so I presume you are not too concerned about this, just curious what might be causing it?  I hope your leads are not defective and that you are not experiencing any other symptoms that could point to a lead problem, like fatigue, breathlessness, palpitations, dizziness, syncope, chest discomfort?  If you are worried about the "burning pain" I would ask your general doctor for some checks to rule out some conditions that can cause burning pain.  Good luck