What Doctors and Tech know

Three months in and still no answers.  I am amazed at what Doctors and Techs don't know about these devices.  (Perhaps I should have said my Doctors and Tech but reading some of he comments here makes me think I am not alone.) Have concluded that it is because they aren't living with one.  They understand "how" they are suppose to work but if there is a glitch they go to some manual to try and figure it out.  If that doesn't work...as told to me...it is probably in your head. 

Does anyone out there ever have what I can only decribe as a live wire jerking feeling in the left side under my breast.  Sometime I go days without feeling it and then I can be shopping and it hits.  Timing is different with the lenght but it hurts and is very uncomfortable and stops me in my tracks.


4 Comments

Need more information about your symptoms

by crustyg - 2020-06-18 11:40:50

Please help us to help you - if we can - by updating your profile (still showing 0 devices, date, model etc.).  *IF* these unpleasant jolts of pain are fairly near the the skin surface (albeit under the breast - i.e. outside the ribcage) then it's possible that this is from the PM pocket.  It's quite common for the pocket to give twinges for months after implantation.

Alternatively if the pain is much deeper - *inside* the ribcage, then it's *possible* that you're getting stimulation of the diaphragm, although unlikely and it suggests additional problems.

There are plenty of contributors here who have been through the phase 'my Doc doesn't listen to me / take my symptoms seriously'.  You can best counter this by making yourself as well informed as you can (and this forum is a good start), and being firm with your medical team, taking a list of dates/times/symptoms and not letting them dismiss you - maximum charm, but iron fist inside the velvet glove.

FWIW, the BostonSci manual for all of their PMs (not ICDs) is 172 pages long - I know, I've read *most* of it.  And I can assure you that the vendor reps have access to documentation that is at least twice as detailed, if not more.  There is a *ton* of stuff to know about modern PMs and the effect/impact of any given setting requires experience to become confident about predicting the result of any change.  Some of the safety features of modern PMs have unexpected effects (e.g. sudden lowering of HR).  Meanwhile the docs are trying to listen out for symptoms that indicate problems that aren't related to PM programming, like migrating leads, broken stitches, perforations, leaks etc.

Who'd be a doctor, huh!

to crustyg

by HIT&RUN - 2020-06-18 11:59:42

The jolts are under my breast (I am a woman) not at the sight of the pacemaker,  and I would say on top of my ribs.

I don't believe I was given a BostonScientific manual.  Would my Tech be able to provide me with one?

You can download the BostonSci manuals from the Internet

by crustyg - 2020-06-18 12:54:46

BostonSci are pretty open about their manuals - e.g. https://www.bostonscientific.com/content/dam/Manuals/us/current-rev-en/359239-002_multi_RG_en-US_S.pdf

HTH.

Be your own advocate!!!

by steppingstones - 2020-06-20 23:54:07

I can totally relate to the doctor and tech problem when they totally don’t listen.  When it is something minor, I will research and try to find the answer or a clue to help them.  About 5 months after my last PM device was implanted, I started having an arrythmia that would make me gray out without warning.  It would happen anytime and I could no longer drive because of it.  When I would go to see the EP and of course it was a tech they found nothing.  I asked for the representative for the pacemaker manufacturer to be present the next time I was there.  BOY, DID THAT MAKE A DIFFERENCE!!!  That rep knew the pacemaker and was able to make the changes. 

After I left the EP’s office, I called the manufacturer and told them what I had been through trying to get this fixed.  They told me they would have the rep train the tech on what to look out for.  I have never called a manufacturer and not had a good response. (43 yrs. / 7 devices) and each has their own quirk.

I have even gone to another EP before for a second opinion.  Don’t rule that out. 

You know you're wired when...

Your device makes you win at the slot machines.

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