Phrenic nerve stimulation

Phrenic nerve stimulation

by Gemita - 2022-02-06 12:06:13

JiilG

I am so sorry to hear about your difficulties and it does seem to be fairly common.  I would ask if this stimulation is caused by your left ventricular lead or nerve damage during implant surgery?  I can recall my EP telling me that one of the risks of implant surgery could be phrenic nerve damage causing the type of stimulation and other symptoms you describe, particularly the SOB, although in time the nerve usually heals and symptoms resolve.  

The LV lead is often the cause of diaphragmatic stimulation because of its proximity to the phrenic nerve, but it appears there are many programming options to eliminate this stimulation, so please ask your doctors.  You could start by asking what polarity your LV lead is in?  One member if I recall correctly had hers in “Quadripolar”.  Changing polarity (direction of electrical charge) can sometimes help as well as other pacemaker settings.

I note that turning down your voltage brought instant relief so it does appear that high voltage is no doubt a trigger.  When they first implant they usually leave the lead voltage set slightly higher than normal range while leads are embedding into heart tissue.  Once lead is well in place and scar tissue has formed, they lower voltage.  There are several possible settings they can adjust but if these fail to help, then you could always ask them to X-ray the position of your leads to see if any movement has occurred and whether this might be causing your stimulation?  Also ask whether you might have started getting an arrhythmia like a PVC (premature ventricular contraction) because stimulation by a pacing lead might well be a trigger.

You ask, "could it go back to over stimulation on its own"?  Yes this could be possible if caused by some “intermittent” nerve related problem or your phrenic nerve is being stimulated by your left ventricular lead "intermittently".  For example, changing positions or putting pressure on your diaphragm say by filling the stomach, bending over, causing abdominal organs to push up against the diaphragm, these could all trigger or worsen your symptoms.  There are so many possibilities, aren't there.  In my opinion this will get better and you shouldn’t get disheartened, but I would keep up the pressure and get the settings adjusted to suit you better.  Then only time can do the rest and heal you completely and you can then start to really benefit.

I am sure in experienced hands, this can be sorted and I wish you well.

Phrenic nerve stimulation

by Julros - 2022-02-06 14:36:22

Gemita is spot on here. I have a BiV, and intially, my pectoral muscle twitched, and occasionally my my diaphram twitched, due to the higher inital settings. The voltage needs to be higher initially, until the heart muscle heals and inflammation around the leads goes down. In my case, they said my cardiac vein where the lead was, was so big that initially the lead was "floating", so higher voltage was needed for capture (properly triggering contraction). 

They eventually turned down the voltage (I don't remember at what point, maybe 3 months) and my pectoral muscle stopped twitching, diaphram intermittantly. At about 1 years time, the diaplhram twitching was worse, and triggering gastric reflux.I suspect this was because I acheived a 40 pound weight loss. 

I had a treadmill test to optimise settings with the manufacturer's rep and he was able get the twitching to stop. And yes, my LV lead is quadripolar, and per the rep, because of that there are up to 16 different options, so it takes some time for optimal adjusting. I suggest a device interrogation with the manufacturer's rep present, because they should know all the options for your device. 

Thank you for the advice

by JillG - 2022-02-07 11:12:15

Gemita and Julros,

Thank you for replying with some great advice. I need to educate myself more on the device and what all it actually does so I'm more prepared to converse with my EP. You provided some great tips to get me started. My biggest concern is that what I'm experiencing is not related to the pacemaker and my heart is just worsening. Deep down I believe it's the device because it's similar to what I had encountered in the beginning.  It's the "what if". I have had the twitching of the pectoral muscle as well, or I assume that is it. It's not painful, just annoying. It frequently wakes me up at night depending on my sleeping position. I really pray my doctor listens to my concerns Thursday. Three weeks ago I was jogging and walking three days a week and doing yoga 3 days. Now that I began having these diaphragm spasms I can't do anything. :( 

Certainly uncomfortable! Get it fixed!

by Mae11 - 2022-02-07 11:51:11

I wish I knew how to upload a video(if that's an option on here). My entire torso was pulsating everytime my pacer kicked in. When I finally caught it with my hubby next to me, he couldn't believe how forceful it was!

This started right after surgery and they brushed it off as muscle spasms (not sure how with how common it seems). By the middle of the week I knew something had to be up,  and called my EPs office. I was seen right away and they messed with settings but were unable to fix it, so I had a 2nd surgery a week later to reposition the lead.

It is certainly uncomfortable, and you deserve relief! Whether they are able to mess with settings or it needs repositioned, you shouldn't have to just tolerate it!

Thank you! Great advice

by JillG - 2022-02-07 14:13:17

Thank you Mae11, it really helps to hear others experiencing similar issues. Wow! I have not physically noticed it pulsating but that would be awful. They cranked up the voltage in the clinic trying to change the settings and I about jumped off the table, felt like something was kicking my abdomen. I can't ever get comfortable and can't breath. I felt better before the device. I did get some relief after they changed things in December, but it's back and worse than before. I agree, I should not be having to deal with this. Especially, since we have not even discussed other options except turning it off completely. 

Yeah, that's not okay!

by Mae11 - 2022-02-07 15:12:21

Turn the device off completely? That seems like a childish fit, not a doctor's advice. Is this the EP who did the implant? I would be getting a second opinion if they don't give you some options for long term relief. 

Frustrating!

by JillG - 2022-02-07 15:42:33

That's correct! I feel like I'm being threatened. He is the Ep who did the surgery.  If he doesn't offer any further testing to find a solution I will be getting a second opinion. Only if we found no other solutions, would I consider turning it off. 

Nerve pacing

by AgentX86 - 2022-02-07 16:05:09

The more important problem here than why is it pacing the nerve is why the hell they're not doing anything about it? Shut it down for three weeks? Fire the incompetent boobs and file a complaint with your state's medical board.

Agentx86

by JillG - 2022-02-07 16:39:03

Agentx86- Yes, it could possibly happen! 

I second Agent's motion!

by Mae11 - 2022-02-07 16:51:55

My EP isn't exactly my favorite person in the world, and doesn't have the best practices or bedside manor in my opinion.. BUT when he saw what was going on he found a solution almost immediately. 

How would turning it off be a viable option, when there had to be an obvious need for the ICD? 

Not sure!

by JillG - 2022-02-07 17:36:52

The first time they turned it off was in the clinic. The doctor was not in the office that day. The rep and technicians could not find a setting to give me any relief. They called the doctor to ask his opinion. He told them to shut the pacing off until he could see me. Obviously, I still have the defibrillator function. They did not get me in for three weeks for him to check me out and see what he could do. He turned it back on and found a tolerable setting, but not ideal. I asked about moving leads to correct the problem and he said he doesn't know until he looks at the images to see what's available to run the lead through. He said he chose the best option to get the optimal stimulation to my left ventricle. I'm not doubting that. When I call to ask about current issues, he says that he doesn't want to shut it off so I may have to deal with the symptoms. He's horrible to communicate with and has a terrible bedside manner, but apparently a good surgeon.  What really got me was when I saw my cardiologist last month and he said the Ep noted he did not plan to move my leads.