Parylene coated pacemaker

Titanium allergy is apparently a thing

by AgentX86 - 2019-10-19 11:26:30

This sorta surprised me but your wife isn't alone: <https://academic.oup.com/europace/article/12/5/749/2398491>

I assume her EP knows about her Ti sensitivity and will select a pacemaker that will be compatible with her body.  It's a known issue and apparently there are solutions.  It's really her EP's job to select the appropriate tools but you may have to make sure it happens (trust but verify).

Your best course of action now is advocacy for your wife.  Let her relax, as best she can, and you pick up the "bad cop" job.  My wife has done that for me over the past few years and I appreciate it immensely. It really works well because she can be where I'm not.

This forum is great.  We can all learn from the others here.

docs job

by dwelch - 2019-10-20 00:15:08

Its the docs job to select the device, let them do that.  Your job is to let them know your allergies, activities, etc they need to select the device.  I assume you/your wife have indicated this to the doc.  

The pacer vendors should already be well versed in how to get this coating done if they dont do it themselves.  Cant imagine you are the first to have this issue (googling shows someone in 2014 asked about it here). 

The pacer vendors have representatives/techs that work with your doctor to both select the device as well as the initial programming etc.  It is a team effort the patient the ep/doc, rep, surgeon, etc.   The rep will be there at the surgery with their box of goodies, your device, spare leads, tools, etc.

Despite that it is worth talking to the doc/EP about the device they have selected, how the coating works, what are the issues of having a coated device, replacements more often than normal for example, extra measures taken during the surgery.  Does your surgeon (note your EP/cardiologist might not be the one doing the surgery and that is just fine) have experience with coated devices, etc.  Plus all the other normal stuff like how many leads, why, features of the device, battery life expectancy for your condition, and so on.  (note there is no one "best" brand the major players are all good and all have issues with devices from time to time.  One way to think about it is the last one to make the news is probably the least likely to have another issue for a while)

Allergy to titanium pacemaker

by larrycruzen - 2019-10-20 11:18:39

I realize that it’s the doc’s job to pick the pacemaker. She is scheduled to have a pacemaker installed next Wednesday, followed by an AV node ablation on Nov. 20th. Her medical history shows that she has a severe titanium implant allergy (discovered dramatically when she had some titanium studs installed in her jaw bones a couple of years ago...they had to be removed). 

During discussions in the EP’s office about doing a regular ablation, it was clearly stated that she was even allergic to the trace amounts of titanium dioxide used in many pill coatings. When the decision was made to go with an AV node ablation, requiring a pacemaker, the doc scheduled her for both procedures without mentioning that the pacemaker used a titanium case. I discovered it myself a couple of days ago. Further research showed that medical implants can be conformally coated using a Parylene vapor depostion process. I found that St. Judes hospital uses these. I don’t know their source.

So on Monday, when I can get hold of the EP, I intend to remind him of her titanium allergy. The pacemaker installation is scheduled two days later. In case he did not know where to obtain a suitable pacemaker, I was trying to have some sources at hand.

I was not intending to tell him what to do, except not to put any titanium in her body. Been down that road before with serious consequences.

Larry Cruzen

Perfect attitude-trust but verify

by AgentX86 - 2019-10-20 12:11:00

It is great that you're looking out for her.  Doctors sometimes need to be reminded about these uncommon, though crucial, facts. As long as he understands the problem, I'm sure he can find the solution (I'd seen gold plating referred to, as well) and a source. The medical device salesman will see to the last part.  ;-)

Titanium pacemaker allergy update

by larrycruzen - 2019-10-21 22:30:54

We met with the EP’s nurse today. She blamed the computer for the doc not knowing about my wife’s inability to tolerate titanium implants. Yep, sure. It sounds like he doubts her allergy. His comment was, “In my 35 years experience, I’ve never heard of such a thing. She needs to have an allergy test.” The reference provided by Mr. AgentX86, above, states twice that “Negative skin patch testing to titanium does not exclude allergic reaction to this pacemaker component.”

The installation of a pacemaker, scheduled for the day after tomorrow, has been cancelled.

I have a concern about the use of a coated pacemaker. Even with the device and the leads encapsulated, the bare ends of the leads are in direct contact with the heart. That’s a terrible place to develop a severe adverse reaction to the bare metal. The leads would not be titanium, but they may be some other metal that my wife can’t tolerate as an implant. She has tolerated the stent that was placed in her LAD nine years ago, but that is made from chrome cobalt alloy.

Sure wish I could discuss this whole thing with an expert. Doctors are too busy to talk with a patient. Our next appointment with the EP is not until Nov. 8th.

My thinking is that maybe she should return to the original course of action, which was to do a regular ablation. Her A-Fib is paroxysmal, so there is some fair probablity of that correcting the problem for a reasonable period of time.

I’m wide open to comments.

Larry Cruzen

All about trust

by Gotrhythm - 2019-10-22 15:51:26

If you find yourself with a doctor who "overlooks" an important piece of your wife's history and then "doesn't believe" it really happened just because he hasn't seen a case...

Maya Angelou said, "People will always tell you who they are. When they do, listen."

It seems to me your intuition that he shouldn't be trusted with the pacemaker surgery is well-founded. There are few people more dangerous than those who don't change their own opinion even when given strong evidence to the contrary. You can't argue with someone who can't be swayed by the facts.

Rather than trying to figure out a way to get around this pacemaker surgery, it would be better to seek advice and treatment elsewhere. Since your wife has already had one rare reaction, you might want to go to a major medical center where rare cases are often seen. They could offer you some more options. Travel if you have to.