ICD Complications

Hi all, had my Medtronic 3 lead ICD implanted Nov 26th 2021. 

Since having it I feel worse than before. Short of breathe, irregular beats at times, trouble sleeping, depressed. I had swelling and nerve pain in left arm and neck which has eased slightly. Feel as tho it has made life worse not better. At 4 week check up I was told 3rd lead may be hitting nerve to diaphram. Has anyone else had similar things happen and can offer some advice? Thanks 


3 Comments

Stay Positive

by MinimeJer05 - 2022-02-08 10:11:27

Hello Cassiem,

While I can't say that I experienced the nerve pain in left arm and neck, I can say that immediately following my pacer implant, I definitely did not feel better.

I too described my situation as worse -- depressed, difficulty sleeping, difficulty going for walks, difficulty doing just about anything aside from sitting on the couch or resting.

I still battle with my own issues -- for me, it's mostly a vision/motion disturbance that comes on in the form of "spells" as in, I am fine one minute and then feel like crap the next minute. This can last for minutes or hours and it's constantly on my mind.

My best advice is to try to stay positive -- focus on the good (even if that is hard to find). Try to drink lots of water and keep a healthy and balanced diet, as well as plenty of rest and whatver you do to de-stress -- these basic and simple tips sound useless, but they really helped me during my darker moments.

Also, don't be afraid to engage your general doctors and your cardiac team. Sometimes, other things pop up that might be unrelated (or related) to the pacer implant. Some people develop severe anxiety or depression, which can effect your sleep and can cause shortness of breath, blurred vision, racing heart, etc. 

For me, I just focused on eliminating the heart/pacemaker as the source for all things. I did several MRI/CT/echo scans of the heart (and even the brain) to verify that my issue wasn't severe. I then started working on eliminating easier things (went for a sleep study, saw an eye doctor, was briefly on anxiety medications) and have now landed in vestibular therapy to treat my vision/motion issues.

Some days, I feel "almost normal" again and other days I feel like complete crap and like my body is on high alert. I'd like to say it gets easier over night, but that isn't true. It takes time getting comfortable to these changes and it takes time accepting that you will eventually be A-OK again. Allow yourself that time to grow and heal. Allow yourself moments to feel depressed or to soak in what is happening, but don't allow yourself to sit in that state forever. Eventually, we need you moving upwards and onwards and trust me.....IT WILL happen!

I hope your recovery continues to trend in a positive direction. Continue to engage your medical team, while also reminding yourself that you've been through a big life event and that everything is going to be good from here on out.

Take care and don't hesitate to reach out to the club with any other concerns.

Jer

Advocate for yourself

by Gotrhythm - 2022-02-08 16:14:44

So sorry you're feeling worse not better.

Yes, sometimes it happens that the pacemaker is pacing in the diaphragm. It's a frequent-enough problem that your doctor should be well versed in what to do about it (there are things that can be done--you don't have to live with it.)

It's definitely time for you to advocate for yourself. To start out, they give you one size fits all settings. Some people feel okay. But others of us need the settings tailored to our specific body and way of life. There's really no such thing as the "right" settings. There's only "right for you."

The only way the doctor can tell if your settings are right is if you tell her/him how you feel. It's not unreasonable to want to feel as good as you possibly can. But recognize there's as much art as science in tailoring the settins to you. You might have to go back several times to get the tweaks you need.

If you find it hard to speak up for yourself, there's no shame in taking someone with you to help you advocate for yourself.

I feel worse too!

by JillG - 2022-02-08 17:02:06

Im sorry to hear that, I can relate. I had my crt-d device placed November 3, 2021. I have felt worse also. I've experienced more shortness of breath than before, overal malaise, left arm pain. They did determine I was experiencing diaphragm nerve stimulation from the beginning. I hope they can find a resolution for your issues as well as mine so we can start to benefit from our device. All the best! 

You know you're wired when...

Your device makes you win at the slot machines.

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