20 year old female with pain

My 20 year old daughter was diagnosed with a left ventricular  aneurysm at birth and followed by a pediatric cardiologist for 20 years. In these 20 years she never had any substantial symptoms (besides some dizziness) that would lead us to believe that her heart condition would cause her any problems in life...until recently. She was waitressing at a small  restaurant in town when she went into sudden cardiac arrest. Luckily there was a first reaponder nearby who preformed cpr until the police arrived with a defibrillator. They had to shock her 3 times to bring her back from cardiac death. This was about 10 weeks ago. She was transported from our small hospital in Morrisville to a level 1 trauma center in Burlington VT. After she woke from her  coma and gained some strength, her EP implanted an ICD . He was assisted by a plastic surgeon to insert the device under her pectoral muscle.

My daughter, Ema, has has some occasional dizziness and shortness of breath, which her doctor has been consulted about. Tonight she has some new pain just under her breast. She said its hard to explain, its not at the site of the defibroallator, but under the breast and close to the  sternum. It hurts to sleep on that side and at the same time it almost feels better to put pressure on this one particular spot. She cannot tell if its muscular pain or deeper than that. 

I hope its just a pulled muscle or something minor, but I dont want to ignore it if it could be related to the defibrollator. My first thought was infection or lead movement, but I really have no idea. This is all so new for us.

Ema has felt well for the last 7 weeks, and almost back to her normal life. Her doctors did an amazing job with the implant, you can barely even see it!! I feel like this pain could be insignificant, but I want to stay ontop of any concerns. 

Has anyone had pain in this area related to their defibrollator? If yes, can you ellaborate?

I would be beyond grateful for any advice.

 


5 Comments

20 year old

by Ironman7 - 2019-01-03 04:55:40

When I had my pacemaker installed, for 6 months or so I had this shoulder, arm pain.  Doctors couldn’t explain but eventually it went away.  Later I was told by the EP physician it was most likely nerve damage from the surgery.  Watch it close, it might just go away.

I’ve done 7 Ironman full races, push my heart hard, I have VT at 220 beats per minute, was ablated, the VT seems to have gone away for now.  Your daughter should be able to live a full life.  My advice, keep moving.

ironman

20 year old

by Ironman7 - 2019-01-03 04:55:40

When I had my pacemaker installed, for 6 months or so I had this shoulder, arm pain.  Doctors couldn’t explain but eventually it went away.  Later I was told by the EP physician it was most likely nerve damage from the surgery.  Watch it close, it might just go away.

 

ironman

healing

by Tracey_E - 2019-01-03 10:49:18

We get all sorts of weird pains as scar tissue builds up and nerves knit back together. When in doubt, call her doctor to be sure, but little aches and pains, shootings sensations, tightness, are all par for the course. 

ten weeks

by dwelch - 2019-01-06 04:11:39

if she is only ten weeks in then that is still on the far side of normal recovery.  As always trust Tracey's answer.  I am 30 years in, fifth device.  Last couple of weeks have had issues sleeping on that side, not had issues like that before other than post surgery.  I think I flipped over to that side and banged it on the pocket perhaps.  didnt last that long.  a relative that is not used to it banged it when I hugged her new years that hurt into the next day.  Just part of having it.  You do have to learn to sleep with them, both the mechanical you wont want to sleep on it face down, and your new rythm might be faster than you were used to so might be harder to get to sleep, etc.

if you are ten weeks in then you probably had one post op visit already?  if not one is coming up you can talk to the doc then or at the next visit or certainly just call them.  They work for you not the other way around.

Hmm, also if she did the stiff shoulder thing then that takes a while to recover from.  to avoid the pain of pulling on the skin you will keep your shoulder stiff or worse curl your shoulder around and use your muscles to hold it that way, those muscles become very painful and the whole recovery takes longer.  did that on like number four I think...should have known better by then.  number four was this wee bitty thing too, very small device...

Call the office or if your next checkup is coming soon add this to the list of questions.  

Diagnosis: Costochondritis

by RheaSun - 2019-01-10 16:49:39

Pain did not subside, so we went to see cardiologist. His diagnosis was costochonditis, inflammation of cartalidge/ joint of ribcage to sternum. He told my daughter not to sleep on her left side because laying on that side pushes the device into her sternum. She was given the larger of the 2 ICDs, maybe they should have used the smaller one becasuse Ema is so small. The EP chose the larger one because it would last longer. The cardiologist also said he wants Ema to work, but the waitressing job may be irratating the area. She will have to take it easy for a little longer.

 

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You run like the bionic woman.

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I had a pacemaker since 2002 and ever since then my life has been a total blessing.