Unknown pains

This is my first post and sorry its so long but you will understand after reading.

So my wife had a pacemaker put in on May 28th 2010 and she is under 30 years old. Everything after that has been awful. First she had a collapse lung happen during the surgery, She had chest tube to remove the fluid. Soon after they discovered blood clots in her arm and at the wire insertion point and have put her on blood thinners. Soon after that they discovered a lead had perferated her heart. They had to make a window in her pericardial sac around the heart, back track the lead and repostion it. Also a another chest tube put in to remove fluid. Soon after that we were back in because she had more fluid around the lung. Another chest tube. Not long after that she was having pains under her left breast, shoulder, and near sternum. We were sent to an athletic doctor who said she sprained her shoulder. A few days later more fluid on the lungs. Given diaretic pill for water and went away. Fine for a lil while then pain back again this time no fluid. Given anti inflammatory arthritis medicine. This was basically 3 months of our lives this summer crammed into a paragraph. There was probably more that happen but you get the point.

Well my wife is about 3 months post op and she still has a shoulder pain especially when doing anything minorly active using her arm or not.  Also has a pain under left breast which she felt when she had fluid. She also has a pain on and off near her heart/sternum area. We have seen probably over 10 doctors during this process, switched primary doctor, have electrophysiologist, cardiac surgeon and ran every test under the roof. No fluid can be seen, no swelling around the heart, no perferation of the heart. Pain killers only dull the pain but its still there. Her left side breast seems to get bigger or swollen at times, its noticable. Doctors are out of answers. No idea what could still be causing all this pain 3 months later especially if they can not see anything wrong. 1 doctor told us "well i wake up with pain every morning and i just deal with it" anyone have theories or advice.

Thanks

5 Comments

Wow!

by Heidiglassmeyer - 2010-08-29 01:08:26

All I can say is I am so sorry to hear your wife has had so many complications. My first thought when reading was get another Dr.! Maybe you can post where you live and someone can suggest a great Dr. I can not believe a Dr. would say they wake up in pain every day and expect you to deal with it. I read your post it total shock. Yes, complications happen but sounds like she has had more than her share. Sorry, no other advise other than find a Dr that will help. Be persistent until you find the right doctor. May want to seek a great GP that can look at the big picture just in case the symptoms are not related but it sounds like they may be.

Best wishes!

???????

by Duke60 - 2010-08-29 03:08:20

Taking any oral contraceptives, hormone replacement therapy and fertility drugs? (For the breast pain)
Shoulder pinched nerve?
KInd of off the wall but it appears they have checked everything else?

Another suggestion...

by Pookie - 2010-08-29 05:08:27

My story is very similar to your wife's.

My shoulder pain was finally diagnosed as a torn rotator cuff. Ask doctor for a CT scan and/or an ultrasound of the left shoulder.

Also, some of her pain could perhaps be nerve pain. I am only guessing as you mentioned she had a few chest tubes, plus several members have described the same type of pain in the same area after having surgery as well. Her scar may be healed completely by now, but underneath - there is still a lot of healing yet to be done.

I too had fluid around the lungs and pericarditis - it took me almost a year before that pain fully went away. Was your wife on Prednisone by any chance??? Plus I had 4 surgeries all within 10 days and then my 5th surgery 5 months after the initial implant, so I am guessing again with all those surgeries your wife had and all the trauma she has endured to her body (let alone her mind) that there has got to be some kind of nerve damage. Again, I am only guessing based on what I went through.

Gellia also brought up another condition that I won't even try to spell (lol) that has also been mentioned as a diagnosis for some members here after having a pacemaker as well.

The pain near her heart/sterum - I had that too and I swear to this day it was because of the huge amount of medications I was taking which caused major heartburn and for some people (like me) that is where I get my pain and it goes straight through to my back and also under my left breast because your stomach is right there!!!!

It's going to be a rough road until you find a doctor who is actually willing to listen to your story and want to take the time to help your wife. If not, you will be sent from one doctor to another doctor just like I was.

I too was told by one doctor that he also wakes up with pain every day and told me "to get over it". I then walked out of his office immediately. I thought about reporting him, but didn't have the energy.

I didn't look to see where you and your wife are from, but I hope wherever you live, you have lots of doctors to choose from. Everyone is entitled to a 2nd or even a 3rd opinion.

Remember - it's the squeaky wheel that will get the grease....so keep on squeaking!!!!!!!! There were many days I was ready to give up, but finally I found a doctor who was willing to listen and now I am living, not just existing.

I truly wish your wife the best.

Never ever ever give up hope. NEVER.

Pookie

Oops!

by Gellia3 - 2010-08-29 11:08:25

costochondritis.....no "r"

Costochondritis.

Sorry.
G

Hi

by Gellia3 - 2010-08-29 11:08:49

I'm not sure if this will help or not, but you may want to read up on costrochondritis. It is VERY painful, as I went through a bout last winter and well know. My collarbone got so large it looked like I had a third boob and the pain around my rib cage through to my back made it so I could hardly breathe.

Did the anti inflammatories help your wife? That was the only thing that worked for me and I had to take them religiously or I knew it. It did all gradually go away but it took a good 9 -10 months for it to do so.
Honestly, I don't ever want to have that happen again!

Please tell your wife to hang in there. If it is costrochondritis, there is a light at the end of the tunnel.

Best to you,
Gellia

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