Has anyone here gotten post cardiac injury syndrome?

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Pixelgrowth

Active member
Joined
Apr 4, 2024
Messages
29
Location
Charleston South Carolina
How long did it take you to recover from it? And when did it start. I'm about 3 months after surgery. My lungs hurt pretty bad and my muscles in my shoulders and neck have been very sore. I'm a bit tachy but the doctors don't seem super concerned about it.
 
For me, they tied my arm to a board to immobilize it to put in all the tubes. This left me with a very painful shoulder and neck. In the hospital they had a PT see me and she gave me a heating pad and exercises. The exercises helped but it took several months to get back to normal. Maybe you need to see a PT.
 
After my chest healed and that pain from that went away I noticed that I had a lot of pain in my left shoulder and was unable to do certain things (reaching up or putting arms out like wings etc). Turned out I had damage to my rotator cuff ("impingement of the Supraspinatus" or something like that). I needed about 3-4 months of PT therapy plus home exercises to heal that. You might be going through something similar.

Ironically I have the same thing now in my right shoulder. Twisted it somehow while sleeping. Need to do something about that but have been putting it off.
 
slipkid said:
After my chest healed and that pain from that went away I noticed that I had a lot of pain in my left shoulder and was unable to do certain things (reaching up or putting arms out like wings etc). Turned out I had damage to my rotator cuff ("impingement of the Supraspinatus" or something like that). I needed about 3-4 months of PT therapy plus home exercises to heal that. You might be going through something similar.

Ironically I have the same thing now in my right shoulder. Twisted it somehow while sleeping. Need to do something about that but have been putting it off.
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I eventually ended up going back to the hospital to see if there was anything else I could do. My pharmacist friend recommended I try steroids and I asked them about that. I've been on Prednisone for a few days now and its been working wonders no more pain in my shoulders or lungs. Hopefully it's just inflammation and will go away after a bit.
 
Pixelgrowth said:
How long did it take you to recover from it? And when did it start. I'm about 3 months after surgery. My lungs hurt pretty bad and my muscles in my shoulders and neck have been very sore. I'm a bit tachy but the doctors don't seem super concerned about it.
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I hadn't ever heard of this, but I can see why:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10978175/

Post-cardiac injury syndrome (PCIS) is an umbrella term used for the post-pericardiotomy syndrome, post-myocardial infarction (MI) related pericarditis (Dressler syndrome), and post-traumatic pericarditis (percutaneous coronary intervention (PCI) or cardiac implantable electronic device (CIED) placement). All these conditions give rise to PCIS due to an inciting cardiac injury to pericardial or pleural mesothelial cells, leading to subsequent inflammation syndromes ranging from uncomplicated pericarditis to massive pleural effusion.​

I guess we've all had some of it, I guess what matters is "how long" your symptoms persist for (chronic or acute).

I hope your situation clears up.
 
I've never heard it called PCIS. Right after surgery I was pretty sore, but they told me it was due to the position on the table, which is pretty much bent backwards enough for your shoulder blades to almost touch, but I don't think that would be PCIS. However, I have recurrent acute pericarditis, which is more common with mitral valve surgery. It started about 8 weeks after surgery. It would recur every time they lowered the Prednisone dosage. I stayed on a low dose of Prednisone for 9 months (and gained more weight in that 9 months than both my pregnancies combined) and then when Vioxx came out, I went off Prednisone and would take Vioxx if I started feeling the early symptom, which was always pain under my left collarbone and difficulty breathing. In the beginning, there was a lot of fluid (pericardial effusion) and they talked about a pericardial window, but it dissipated on its own. After that, I'd get the pain, but no fluid. The recurrences were once or twice a month for the first year, gradually growing farther apart until it happened 2-3 times a year. About 7-8 years ago I was put on a course of Colchecine (a gout medicine) and now I get it maybe once every year or two. As soon as I feel the pain, I take Aleve for a couple of days, and it goes away.
 
Lisa from LJ said:
I've never heard it called PCIS. Right after surgery I was pretty sore, but they told me it was due to the position on the table, which is pretty much bent backwards enough for your shoulder blades to almost touch, but I don't think that would be PCIS. However, I have recurrent acute pericarditis, which is more common with mitral valve surgery. It started about 8 weeks after surgery. It would recur every time they lowered the Prednisone dosage. I stayed on a low dose of Prednisone for 9 months (and gained more weight in that 9 months than both my pregnancies combined) and then when Vioxx came out, I went off Prednisone and would take Vioxx if I started feeling the early symptom, which was always pain under my left collarbone and difficulty breathing. In the beginning, there was a lot of fluid (pericardial effusion) and they talked about a pericardial window, but it dissipated on its own. After that, I'd get the pain, but no fluid. The recurrences were once or twice a month for the first year, gradually growing farther apart until it happened 2-3 times a year. About 7-8 years ago I was put on a course of Colchecine (a gout medicine) and now I get it maybe once every year or two. As soon as I feel the pain, I take Aleve for a couple of days, and it goes away.
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I'm currently on colchicine and Prednisone. I had small pleural effusions and a medium sized pericardial effusion. They seem to be going down in the last few weeks though. The Prednisone definitely works but I do hope it's not recurrent. I do think there's a good chance I gave myself the inflammation. Once I was given the clear to start working again I worked pretty hard for a few days and then I went on vacation to Europe and walked 8ish miles everyday which mjnd you was only about 2ish months after the surgery. I'm 27 and my cardiologist said I was good to go but. Im hoping I just over did it all.
 
Be careful with Prednisone. It's a powerful drug that can push you in different directions. I was on it for a few weeks and it pushed me close to diabetes.
 
Yes, it's definitely one of those meds, like Warfarin, that you have to weigh the benefits and risks. Other than that 9 month period, I was also on it when I had Rheumatic Fever for about 3-4 months and I've been on the Medrol packs a handful of times for bronchitis. I had a pretty significant Dowagers Hump after the 9-month period, but it has mostly resolved in the 25 years since.
 
Pixelgrowth said:
I'm currently on colchicine and Prednisone. I had small pleural effusions and a medium sized pericardial effusion. They seem to be going down in the last few weeks though. The Prednisone definitely works but I do hope it's not recurrent. I do think there's a good chance I gave myself the inflammation. Once I was given the clear to start working again I worked pretty hard for a few days and then I went on vacation to Europe and walked 8ish miles everyday which mjnd you was only about 2ish months after the surgery. I'm 27 and my cardiologist said I was good to go but. Im hoping I just over did it all.
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I have/had a few different autoimmune issues so am prone to others.
 
Pixelgrowth said:
How long did it take you to recover from it? And when did it start. I'm about 3 months after surgery. My lungs hurt pretty bad and my muscles in my shoulders and neck have been very sore. I'm a bit tachy but the doctors don't seem super concerned about it.
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I’m still recovering from pericarditis which I got 4 weeks after surgery, and I had quite similar symptoms plus pericardial effusion. Just saw that you’re on Colchicine which is the most effective treatment, so hopefully it should clear up soon. My pain reduced after a few weeks of being on colchicine, but I wasn’t allowed to take NSAIDs due to being on warfarin.

Please be careful with prednisone, it has been known to cause chronic pericarditis (although the pain resolves fairly quickly), and it should only be used as a last resort! My pain was excruciating but it was worth waiting for the colchicine to work, as hopefully it’ll prevent future occurrences.
 
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Zara0006 said:
I’m still recovering from pericarditis which I got 4 weeks after surgery, and I had quite similar symptoms plus pericardial effusion. Just saw that you’re on Colchicine which is the most effective treatment, so hopefully it should clear up soon. My pain reduced after a few weeks of being on colchicine, but I wasn’t allowed to take NSAIDs due to being on warfarin.

Please be careful with predisnone, it has been known to cause chronic pericarditis (although the pain resolves fairly quickly), and it should only be used as a last resort! My pain was excruciating but it was worth waiting for the colchicine to work, as hopefully it’ll prevent future occurrences.
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I've been on the colchicine for about 3 weeks now. And the Prednisone for a week my pain is completely gone or atleast barely there at times. I did have the symptoms for about 3 weeks prior. The doctors thought I had a viral infection or something and I was only on ibuprofen. I'm also on warfarin but my cardiologist said that as long as I'm not prone to intestinal bleeding that it's okay to take. I do really hope it's not recurrent. I start tapering my Prednisone in a few days so we shall see how it goes.
 
Zara0006 said:
I’m still recovering from pericarditis which I got 4 weeks after surgery, and I had quite similar symptoms plus pericardial effusion. Just saw that you’re on Colchicine which is the most effective treatment, so hopefully it should clear up soon. My pain reduced after a few weeks of being on colchicine, but I wasn’t allowed to take NSAIDs due to being on warfarin.

Please be careful with prednisone, it has been known to cause chronic pericarditis (although the pain resolves fairly quickly), and it should only be used as a last resort! My pain was excruciating but it was worth waiting for the colchicine to work, as hopefully it’ll prevent future occurrences.
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I do wish the doctors would have warned me about the Prednisone because I probably would have opted to stay with just the colchicine
 
Pixelgrowth said:
I do wish the doctors would have warned me about the Prednisone because I probably would have opted to stay with just the colchicine
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throughout history doctors are clearly demonstrating they don't necessarily know really know much than a well informed patient on a particular topic. Sometimes the information takes a while to get out there and "fully saturate the network". Sometimes I believe its the patients who bring it to the Dr's attention first.

For example how long did this take to cease? "A drug that was marketed as a sedative and treatment for morning sickness in pregnant women in the late 50s and early 60s"

One could argue that compared to the 60's we have faster information transfer. However that's blunted by how much more new stuff there is to get across.

I believe that a good Dr has a relationship with the patient; not just administering and saying next.
 
Zara0006 said:
Please be careful with prednisone, it has been known to cause chronic pericarditis
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Makes me wonder if this was related to my recurrences, but then again, as mentioned earlier, I'm prone to autoimmune issues so hard to say. Colchicine wasn't even on the market yet in 1998, so Vioxx was my miracle drug that got me off Prednisone, even though it was later removed from the market.
 
pellicle said:
throughout history doctors are clearly demonstrating they don't necessarily know really know much than a well informed patient on a particular topic. Sometimes the information takes a while to get out there and "fully saturate the network". Sometimes I believe its the patients who bring it to the Dr's attention first.

For example how long did this take to cease? "A drug that was marketed as a sedative and treatment for morning sickness in pregnant women in the late 50s and early 60s"

One could argue that compared to the 60's we have faster information transfer. However that's blunted by how much more new stuff there is to get across.

I believe that a good Dr has a relationship with the patient; not just administering and saying next.
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You linked to an article about thalidomide. A drug that caused birth defects in many countries, but not in the USA due to the brave actions of Francis Kelsey: https://www.fda.gov/about-fda/fda-h...eviewer-famous-averting-public-health-tragedy

It's a case study for Americans to believe their FDA even if a drug us marketed elsewhere in the world.
 
tom in MO said:
It's a case study for Americans to believe their FDA even if a drug us marketed elsewhere in the world.
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Apparently it was sold in the USA and there were victims

https://harvardpublichealth.org/policy-practice/thalidomide-the-untold-american-story-in-wonder-drug/#:~:text=To this day the [FDA,turns, both courageous and indifferent.

But indeed good work Francis Kelsey

Australia has a poor record there compared to your FDA

https://www.liberal.org.au/latest-n...al experts predict that as,9th of August 1962.
 
pellicle said:
throughout history doctors are clearly demonstrating they don't necessarily know really know much than a well informed patient on a particular topic. Sometimes the information takes a while to get out there and "fully saturate the network". Sometimes I believe its the patients who bring it to the Dr's attention first.

For example how long did this take to cease? "A drug that was marketed as a sedative and treatment for morning sickness in pregnant women in the late 50s and early 60s"

One could argue that compared to the 60's we have faster information transfer. However that's blunted by how much more new stuff there is to get across.

I believe that a good Dr has a relationship with the patient; not just administering and saying next.
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Thalidamide. Awful stuff. So sad....
 
pellicle said:
Apparently it was sold in the USA and there were victims

https://harvardpublichealth.org/policy-practice/thalidomide-the-untold-american-story-in-wonder-drug/#:~:text=To this day the [FDA,turns, both courageous and indifferent.

But indeed good work Francis Kelsey

Australia has a poor record there compared to your FDA

https://www.liberal.org.au/latest-news/2023/11/29/national-apology-all-australians-impacted-thalidomide-tragedy#:~:text=Medical experts predict that as,9th of August 1962.
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Actually, thalidomide was given to expectant mothers in the U.S. via free samples given to doctors. I have personally met a survivor whose mom was given the drug by her ob-gyn. My husband's father was a salesman for Merrell which was the U.S. distributor. The salesmen had samples to give to doctors. The drug had not been approved by the FDA. When Merrell learned that the horrific side effects were caused by the drug Merrell instructed all the sales staff to destroy all remaining samples. My husband, who was a teen at the time, help his father load the drugs into the incinerator that was in their house. Dad was devastated.
 
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