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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

7 weeks post OHS for large asd and 2 cleft valve repair. Still suffering from bad shoulder/back pain

Hi All! I had my OHS Feb 19 for a large primum asd closure, and repair of 2 cleft valves. Recovery has been slow and quite painful. im not gonna sugarcoat it. I did however start to find relief about 5 weeks into recovery. Except for one thing. I have this pain under my left shoulder blade in my back and sometimes on the back of my arm that wont let up and wont go away. I cant sit, I can stand, I cant lie down. Its brutal in the morning, eases a small bit during the day and then by 9pm has me reeling. Pain killers seem to have no effect, I have had this pain 24 7 since the surgery. Anybody else have this kid of problem? Any advice? Cant get to the Dr till next week...but Im going insane in the meantime. Please Help??

Thanks for the tip. I do find relief from a pulsating shower head with some hot water, but it never goes away. How long did you find this "phase" lasted for you? I am just concerned at this point that its some kind of nerve damage, as the rest of my pain is all but gone. I will try the sleeping angle as well. Thanks Amby, and congrats on your son!

Hi
Im now 4 years post my ASD open heart surgery and the pain you describe was very very similar to my week 5, in fact i was really quite taken aback by your description. The pain was in my back and left shoulder blade and nothing really worked. My GP sent me for a cat scan and xray to make sure their were no blood clots but i was just fine. They put it down to simply the recovery and the fact that everything in the chest wall cavity had been ripped apart and was slowly healing. I slept basically upright for several weeks and at night took the meds that had been prescribed (to knock me out)’ and slowly it improved.
I’m not trying to use this forum as a promoting platform for the book i wrote but in your case, my book may prove helpful to you. Www.ellenliveslifetothefull.com.
You will recover and feel great but it will take at least 3 months to feel yourself again.
Take care
Ellen.

Hi Kimmy,

I am glad your recovery is doing so well. I can relate on the back pain. My back pain is more lower pain and legs hurt often. My OHS was December 2012. The past yearI still have a great deal of chest pain. I pretty much live on a heating pad for my back. I am finally seeing a back surgeon on April 17th. The MRI shows several tears in my lumbar of the back. I wonder if you have any tears in your shoulder. Just a thought.

I am so sorry to hear that you are in pain. I am not trying to share this to scare you but to make sure you advocate for yourself. My Dad had open heart surgery and the actual Dr. did not close up. The Dr. caught that a wire used to close his surgery was poking a nerve. They went in and snipped it and he is doing fine. If you do feel relief from the shower though I bet this is more muscle related. Did you try a muscle relaxer? I too had a closure but not as intense as yours. I wish you the best of luck!