CRT-D causing SOB

Diaphragm

by AgentX86 - 2022-10-19 21:47:48

I don't have the problem but pacing the diaphragm is a well known issue.  I've never heard of it going away for months but I suppose anything is possible. There is no reason the lead couldn't move slightly as you move.  There may be solutions.  Sometimes a setting change can eliminate the problem, sometimes not.  I can imagine it's quite a QOL issue and needs to be fixed, one way or another.

Your doctor blowing you off is a more important issue, IMO.  This should never happen.  He's basically telling you that you don't know your own body.  That's a fireable offense, AFAIC.

New EP?

by Lavender - 2022-10-19 21:49:00

In reading your history of this problem, you said you were going to get a second opinion from a different EP on this issue. Did you ever see a new one?

Second opinion

by JillG - 2022-10-19 22:37:27

I did see another EP. He was very hesitant to offer much. Apparently, he thinks very highly of my doctor. He also said it would be difficult to get a rep for my device as they don't work with my brand of device at the hospital he's at. He said it was not impossible, but would require extra effort. After seeing him I decided to go back to my original doctor, who still refused to do anything other than turn off the pacing. He does not think the pacemaker is the problem. I told him we would not turn it off and I would just deal. It had subsided but now it's back in full force. I'm  just trying to find out by inquiring from others experience if it is in fact possibly something I should continue arguing with him about. My heart has improved so I really don't want to turn it off. 

Strange

by Lavender - 2022-10-19 23:17:09

I've never heard of turning off the pacemaker. If you need it, you need it. They don't lightly put them in. 
 

For the left arm, see a licensed masseuse. My left arm gets sore and painful since my pacemaker was implanted. The masseuse has been a great help. You could also try a compression sleeve. 
 

I get myoclonic jerks in my stomach/diaphragm/colon area just as I'm falling asleep at times. Not painful just a twitching spasm. Muscle jerks can have causes that aren't due to underlying disease. Examples include infrequent muscle twitches, low magnesium levels, or muscle fatigue. The doctor says it's harmless. It disrupts me as I fall asleep. Changing position sometimes helps. 
 

I also was strongly feeling a vibration in the upper body and arms after the pacemaker implantation. The tech finally got it to a much milder sensation by changing a setting. I was originally set ring three to the can. She changed it to ring four to the can. It has something to do with the way the signal transmits up the lead to the device. 

To lavender

by JillG - 2022-10-19 23:39:29

I do get those spasms/twitching when I'm trying to get comfortable at night. It's definitely more noticeable then than when I'm actively moving around. Bending over has been a problem too. It causes me to be short of breath. It has been worse since I got my device. They have tried to change my settings but the problem still exists. I never had this problem with the twitting before the pacemaker, so I know it has to be related. I'm just tired of it effecting my quality of life. Thank you all for replying, it's a great help to hear from others. 

Position tested

by Lavender - 2022-10-20 09:21:10

I was tested for phrenic nerve stimulation by the pacemaker tech but I was in a sitting position.  I didn't think to have her test the leads while I was lying down. Lying down is when I feel the vibration. I'm convinced that since I am petite size with very little room between the rib cage and pelvis, the leads may very well lean into and stimulate the area of the diaphragm etc. 

When up and about, busy with my day, there's no problem. At some point, I think the doctor eventually decided that old risk vs benefit theory that my pacemaker is doing its job-I can live with the sensation of vibration as I lie down. It's not long lasting. It's only in bed. I'm living with it. 
 

My cardiologist is very well respected by her peers. She's one of the best around-but lacks bedside manner. She's very strong about sticking up for her patients and is hated by hospital personnel due to her military attitude in directing everyone to do her bidding. She's intimidating for sure. 
 

I did stick up to her and offered to leave her practice after she bristled at me for asking questions and seeking answers. She said to let her worry about things. I had to firmly explain to her that in order for me to be reassured -I needed to understand my own body!

She told me that I yelled at her ( I never raised my voice) and wasn’t respectful and I think that "she’s wrong". 

I explained that six months of fainting, six specialists and a thirty day monitor should have been used sooner. She said it may not have found the ventricular standstill arrhythmia. I said it was intermittent but often. 

Then she said it was "water under the bridge."

She got up from her stool and said that we "kissed and made up". She walked over and sincerely hugged me. 

I am still with her -and still don't care for her -but I only see her every six months at the pacemaker check because I am not on any meds and don't have other cardiac issues other than the electrical stuff. 

Before the setting was changed "ring four to the can"-If I tried to lie on my left side the thumping (like cat purring) went away but sleeping on my back or right side the thumping pounded against my diaphragm.  Like a cellphone on vibrate for a 7 or 8 seconds. Muscle quivering in upper body-chest and arms.

Now it's very mild and not noticeable every night. I can live with it. 

Have them test you lying down. Bend over in front of the dr to show them the SOB. Demonstrate. If it's as good as it gets-then learn to live with it. Our brains adapt in time. The SOB is a whole 'nuther matter though. There's got to be a reason. 

Feeling unheard

by JillG - 2022-10-21 12:42:38

I can relate. If you read my back story you know I've been dealing with this for awhile.  He doesn't  think it's phrenic nerve/diaphragm stimulation because he doesn't see it happening. He calls it "hiccups" when one has that problem and mine is felt enternally. It's like I'm constantly tense and feel like my diaphragm  is constantly twitching. After a few adjustments initially I did get some relief.  I could not eat or drink without being short of breath before. At that time they said that was the best they could adjust it for me to get the optimal benefits. Over the year it has happened intermittently where I feel the twittiching and breathlessness. I think the leads move and are causing the problem. I'm very thin with a small frame as well so it doesn't give much space for the leads to move freely without touching another organ or nerve. 
 

At this point I'm willing to deal with the effects for a trade off of an improved heart. My problem is I don't feel like he has ever tried to address the problem and look for a solution. Just tell me what's going on, what my options are ( not just turning it off) and if this is something I need to live with.  I'm thankful to have the device and my doctor is a very good surgeon with a big ego. My impression of him is he takes pride in his job and doesn't want to be wrong. Terrible bedside manner especially for someone with post surgery issues. If you never had a problem, I think he would be great. I have started lasix to see if that helps with my shortness of breath when bending over. So far it hasn't helped, I've never had fluid retention, but i know it's a common symptom  to experience with hF regardless of fluid. I'm having an echo next month to check my heart EF.  If that doesn't show a decline, then I'm going demand they check these leads again.  Thank you for taking the time to share your experiences. It's so comforting to know we are not alone.