14 year old with CRT-D

Hello I have posted before not exactly sure what happened to my account. Well previously in my post I mentioned that my now 14 yr old daughter after a physical to play school volleyball in 2012 was diagnosed with DCM, LBBB amongst multiple other heart issues that we had never been aware of . She had never showed a sign nor symptom and still till this day has not shown any signs nor symptoms. She has been stable on meds since 2012 but just stable no improvement or decrease in function. Very thankful for this . Doctors decided after much discussion and discussion with other EPS docs across the country due to this not being done on very many children they felt crt-d would be best for her. We had this placed on this past Wednesday the 17th of june 2015 . They were very pleased with the procedure no complications at all and feel the leads are set in prefect positions. Well today my daughter tells me she feels a weird sensation in her chest and throat when she laughs or yawns, she says it doesn't hurt at all just weird . Now I know he had told her and I she would feel some weird sensations for the first few weeks and that's normal. Does anyone know what this may be and is there anyone else that felt something similar. Thanks

5 Comments

Weird feelings

by Theknotguy - 2015-06-20 03:06:34

Even though the doctors say it doesn't happen, you can get weird feelings post PM implant. Younger people can be more sensitive to what's going on. In addition, some people can be more sensitive due to body make up.

I'm one of those really weird people who can feel when I'm in afib. I can tell you the minute it starts, tell you the progression, and tell you when it stops. That's good from the medical side, bad when they start sticking needles in my arm.

Back to your daughter's sensations, post PM implant I had pain going up into my left jaw. That gradually decreased as the swelling went down from the PM implant. But during the first five months, I'd get the pain going up into the jaw.

Another thing was the leads under the clavicle going into the vein. It's an area that is extremely hard to touch in normal day-to-day activities. Consequently when you implant leads, you'll have sensations coming from that area you don't normally feel. Because of the implant in that area, I've had some weird feelings coming from that area. I used to get muscle spasms on the left side of the back of my neck and I feel it's because of the leads in the area. The spasms have decreased over time but I still occasionally get them.

For your daughter, three things. They keep the voltage higher on the PM at first, some sensations will go away when they decrease the voltage. Other sensations go away after the swelling in the body goes down. And, as she becomes accustomed to having the PM her body will learn what is "normal" and sensations will go away.

Sounds like, overall, she's doing very well. Hope it continues that way.

Much thanks

by beautyinhiseyes - 2015-06-20 04:06:11

Thank you for all the replies. This was very helpful. I figured asking in a community of people with experience may be more helpful than asking her doctor seeing that he himself does not have a PM. Bailey is doing amazingly well all thanks to God for that, she is a strong young lady. Working hard to keep her spirits up and let her know that even with this device she is no different that she was prior. The restrictions for this week have her a little down but the spoiling and servant act is making up for all that and she is sucking it up. She is becoming more and more active each day, today she is bugging and bugging me to take her to Walmart , which I will take her :) and to the drive in tonight to see inside out. Im glad she is wanting to do things I was very worried about depression . thanks again and God bless.

You Are A Brave Parent

by TICKYTICKBOO - 2015-06-20 09:06:17

GIVE YOUR DAUGHTER A BIG HUG.

Many of us have a LOT of weird sensations after having a ICD/CRT with defibrillator implanted. I thought of it as my nerves reacting to the device. I had an added pulse in my hand, all sorts of odd sensations in my legs upper chest. Just all sorts of tiny zaps, they did not hurt nor get out of control, just really odd. Slowly they left, I still have a feeling like my device arcs every so often, if it does it once in a day it will happen several times then nothing for a long time.

I am so glad your doctor's implanted the CRT-D in your daughter, it very well could save her life. Every year in the area I live in we have a few little boys die, they are normal active guys, playing organized sports. Almost all of them collapsed on the playing field with their heart stopped. Sometimes the group watching know what to do sometimes they do not. Some of the kids make it to the hospital alive many do not. One 12 year old made a recovery from his first Sudden Cardiac Death. he was put on medication and given a clean bill of health. Five months later playing a different sport he died during practice, no saving him the second time. So sad a CRT/ICD with Defibrillator might have saved him.

Early Days

by PeteFindlay - 2015-06-20 11:06:47

I would imagine all she's feeling is the after-effects of surgery. There's bound to be a bit of weird pulling and stretching on the muscles and skin around the chest, shoulder and neck. All that will settle down over the coming days and weeks. Sounds like she's doing really well after only 3 days!

How Are Things Going?

by TICKYTICKBOO - 2015-08-10 05:08:28

You are right on track worrying about depression, 12 to 15 is rough on everyone, I know it was for me, awhile ago I watched my granddaughter trying to find her way through the maze of young adulthood. It just about broke my heart, so glad my children are raised.

There are medical therapist who help people work through their medical challenges. I went to one when I was debating about not having my CRT-D replaced. The woman helped me reach a decision I feel comfortable with. You might want to consider taking your daughter to someone who specializes in helping people emotionally manage their medical condition.

Some new skills for managing her life would be very useful, all positive life skills are helpful at this stage in her life. I would also get her in a Self-defense course for women. I suggest the basic protection such as many police departments offer you could go with her. I took both of my daughters, we just did basic things,, no kung fu or Hong Kong Fooie. Just things like having your keys in your hand before you get to the door you are going to unlock. Wearing footwear you can run in or kick, situations to avoid. Really basic stuff, i think basic self defense is useful in building self-esteem.

I do hope all is going well, just keep a loose eye out for depression, kids her age switch gears really quick.

Be sure to take care of yourself. Very important for the caretaker not to become worn out.

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