1. Sky was having chest pain when all her leads were turned on. The doctors said it wasn't the pacemaker but decided to turn it off (per my request) to shut me up.
2. The pain stopped when it was off.
3. I figured out that the RA lead had to be the problem. The lead was turned off (leaving just the LV lead on) and the pain never returned.
4. She now has episodes of dizziness and neck pain.
5. I suggested to the doctors that it's pacemaker syndrome and that the RA lead needs to be replaced.
6. Doctors have yet responded to my email regarding PM syndrome. They brushed it off when I brought it up in the clinic at her last appointment.
7. I know that the RA and RV leads need to be replaced.
So what on earth is PM syndrome?
Ventricular pacing has been noted to sacrifice the atrial contribution to ventricular output; in some instances, atrial contraction occurs against closed atrioventricular (AV) valves, producing reverse blood flow and nonphysiologic pressure waves.
Basically, since Sky's atrial leads are not working so is being paced by just her ventricle lead. When her atrial contracts against closed valves she gets dizzy. It doesn't happen with each beat. It happens just a couple times a day. A couple times too many if you ask me!
What are the symptoms?
- Neurologic - Dizziness, near syncope, and confusion
- Heart failure - Dyspnea, orthopnea, paroxysmal nocturnal dyspnea, and edema
- Hypotension - Apprehension, mental status change, diaphoresis, and signs of orthostasis and shock
- Low cardiac output - Fatigue, weakness, dyspnea on exertion, lethargy, and lightheadedness
- Hemodynamic - Pulsation in the neck and abdomen, choking sensation, jaw pain, right upper quadrant (RUQ) pain, chest colds, headache
- Arrhythmias - Palpitations
- Rate related - Chest fullness or pain
The symptoms in bold are what Sky deals with.
So what next? Sky will continue to be dizzy and after some time I assume the doctors will agree with me and the leads will be fixed.
Now I am not suggesting that the doctors are incompetent. They just don't want to plan an unnecessary surgery on an 8 year old. They need to be sure that something is really going on. I think a few weeks of me complaining about Sky will be enough. They need to "present" sky's case to a team before they can proceed. They can't walk in and just say, "Mom thinks it's PM syndrome because the child is dizzy." I get that... but if they review her file, my emails, the letters from her school nurse, and Sky's complaints in her own words, I think they would have enough information to proceed. That is the part that frustrates me most. I know she's going to need another surgery so let's just fix this already! It won't be a major surgery this time. It would be done transvenously in the cath lab. In and out and home the next day.
Ahhhh with my luck they'll plan it on my graduation day. Yup, just my luck!
My little pig with a plate full of ribs!
Science fun!
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