Pacemaker

In 2003 I had a Medtronic pacemaker implanted with two leads. A couple years later they had to add a third late. Everything was going okay until I moved to Tallahassee Florida and of course had to get a new EP. Changed pacemaker in 2014 to Boston Scientific but still used the same leads. Unfortunately I got stuck with an issue even after that pacemaker was recalled and they had to put a new one in so that was number three. The issue was after the second pacemaker I have been stuck with an awful nasty like chemical bitter smell under my left arm in the armpit right arm is fine. They think I'm crazy I've even been to the skin doctor but none of them will take a minute to smell or even do some sort of test to see what it could be. Boston Scientific since they've never had such a complaint but when I first got on the pacemaker Club back in 2015 I think it was a lot of people on there that said they had an arm smell also but I don't see those on here anymore. I have other heart issues also which are getting pretty scary especially the AFib and now my abdominal aorta has calcification all through it. I also have PAH and the vessal from heart to right lung is shrinking. Was taken to the ER one time because my afib was going cuckoo and they had to put me to sleep and put my heart back in rhythm. 2021 is when they had to put the third pacemaker in I forgot to state that earlier. I have tried every deodorant there is and I end up putting whatever I buy on three times during the day even after washing and washing and washing! I even tried pure baking soda! If anyone else has had an issue like this please let know. My doctor wants to know if other people really have had this issue with their Boston Scientific pacemaker in the past so I guess they think I'm lying but like I said I can't pull up those posts from the pacemaker Club from years ago after 2014. 

Thank you for whatever you can tell me. God bless all of you!


5 Comments

Oh to find the answer

by Gemita - 2024-09-06 06:56:36

Lackawanna48, I have checked your history and saw some of the responses to your previous post.  I am assuming you have checked for allergy, infection and things like this?  

Then I would look at worsening AF and your other health conditions, for example the pulmonary hypertension, aortic calcification since an irregular rhythm disturbance, whether at a fast or a slow heart rate can certainly cause increased sweating during poor cardiac function.  Don't underestimate these conditions.  I note you have been through ER already for AF.  Has your GP investigated for chronic disease:  kidneys or liver for example.  Odor perception due to toxic build up can be caused by some chronic diseases, infection, allergy.

I appreciate the smell is only coming from one armpit but this could be due to something like a higher degree of glands located there?  I would go back to your GP for support, help and further investigation.  There has to be an answer.

I have pulled up a few posts on odor in case they are of help.  Please read again the advice from Crustyg and Selwyn in the second link.  I would take copies of these posts to your doctors and suggest, respectfully, they might like to read them.  At least they will know you have done your homework and this will confirm that you are determined to find the cause for your symptoms.

The fact that this all started with pacemaker number two and now you are on pacemaker number three is perhaps one of the reasons why your doctors do not want to look any further.  They don’t know what more they can do to stop this from happening.  They have tried to change your pacemaker, although they changed it to the same brand (Boston Scientific).  Maybe something in the Boston is causing the sensitivity and you need to look at the difference in metals between the Medtronic, your first pacemaker, and your second and third ones of Boston Scientific?  

Please copy and paste all links into your main browser to open.  I don't know what else you could ask about other than a complete device relocation and/or a change of device manufacturer.  Has anyone else noticed the smell, or is it only you?  

https://europepmc.org/article/pmc/pmc9237266

https://www.pacemakerclub.com/message/44716

https://www.pacemakerclub.com/message/29238/odor

you asked this question recently

by new to pace.... - 2024-09-06 06:59:15

Am you recieved some answers.  i am not a doctor.  You might keep a food journal of everything you eat each time  to see if the odor comes from food or drink.  Then of course avoid that food or drink.

new to pace

Smell

by piglet22 - 2024-09-06 08:24:30

I'm wondering how a device like a pacemaker could cause smell to the point where it reaches an armpit.

It means that if it came from the device it would have to diffuse through flesh and skin.

The materials used in the device construction and the leads, will have been chosen to be inert, corrosion resistant and apart from its intended use, will not interact with its surroundings.

Pacemakers are described as hermetically sealed, single use devices. Hermetically sealed means sealing without using methods that could leak over time. More like a tin of beans than a corked bottle.

For what it's worth, there's a scale of Ingress Protection called the IP scale. It covers how easy or difficult it is for liquids or solids to enter a device. The highest rating is IP69 which is complete immersion in water under pressure. I would expect a pacemaker to be IP69 or IP68.

Some devices have pressure equalising valves to allow for temperature changes, but I doubt that a PM would have that.

Hot components have distinctive smells, but generally only under fault conditions.

Lithium batteries used in phones etc. can swell and gas under fault conditions, but the type used in PM devices, I quote

Lithium iodide batteries have several advantages, including:  

Reliability

Lithium iodide batteries have a history of reliability and safety.  

Low self-discharge rate

Lithium iodide batteries don't use much energy when they're not in use, which increases their shelf life.  

Stable voltage

The voltage of a lithium iodide battery remains stable for most of its life, making it easy to plan replacements.  

Hermetically sealed

Lithium iodide batteries don't produce hydrogen gas, so they are sealed to prevent body fluids from getting in.  

Lithium iodide batteries have been used in pacemakers since 1972, and millions of them have been implanted worldwide. 

I think you can rule out the generator.

That leaves the leads. They do fail and the connector is a weak point. it's possible under some catastrophic fault condition of generator or leads that you could get electrolysis or burning. Again, any smells produced would have to diffuse to the surface.

You hear tales of strong smelling foods like garlic reaching the skin.

I asked a medical practitioner once if topical painkillers were any good. She was adamant that they didn't work and dismissed it with "your skin doesn't let water in, does it?"

I may be wrong, but on balance, I can't think that a properly installed and correctly working device could cause your symptoms.

Malodour

by Xtrabeat - 2024-09-06 08:41:33

Hi - sounds very unusual. Have you actually seen someone about it? If so pesumably they have excluded any local disease causing it (such as infection). Is this something else that others can smell and is your PM implanted the same side? From your posts it looks like you have reported this before (7 years ago). 

There are various things that cause malodorous sweat - such as hormones, diabetes, some foods or simply increased sweating - the glands in the arm pit (and groin) cause a different sort of sweat compared to those sweat glands in the rest of the body. Pretty odd that it is just one side though. Sounds like you are under a fair amount of stress - could this be playing a part? Sorry I can't help

Bad smells - think anaerobes

by crustyg - 2024-09-06 09:41:22

Some of the worst smells come from bacteria that avoid oxygen and which get a lot of their energy from suphur metabolism.  Think of a disconnected 'fridge with rotting food in it - the aerobes rapidly use up the limited supply of oxygen and the anaerobes (which are often around us as very long-lived spores) take over.

Relevance: it's entirely possible that there's a small area of dead tissue underneath/behind the PM that has no oxygen and some spores got in during the PM replacement.  The gas tracks under the skin and slowy permeates through the skin near the L-armpit.  Symptoms of infection may be slight at this stage, or masked by other treatments or a damaged immune system.  Patients who've had accidents involving penetration with pieces of wood are especially at risk of this.

In your shoes I'd be pestering my primary care doc for blood tests, careful temperature taking, gentle feeling of the PM to see if there's any tenderness around/under/below the device. And a plain CXR.

How likely is this?  I have no idea.  Tetanus (caused by anaerobic bacteria) used to be quite common before routine (now routine-if-not-immunised-within-10years, IIRC) post injury immunisation.  Yes, you *should* be able to be certain that this couldn't have happened during the box change, but when surgeons stop leaving swabs in patients despite *all* of the strict procedures to prevent this, world peace will follow shortly thereafter.

I'd politely point out that the smell is real, it's new and it's one-sided. And it follows the PM change.  I'm well aware of the Roman warning, post hoc, ergo propter hoc'  but the timeline mustn't be ignored.

 

You know you're wired when...

Your pacemaker interferes with your electronic scale.

Member Quotes

I wouldn't be alive if it wasn't for pacemakers. I've had mine for 35+ years. I was fainting all of the time and had flat-lined also. I feel very blessed to live in this time of technology.