Pericardial Window questions

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BamaFan
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/24/2009 4:13 PM (GMT -6)   
Hello,
I am new to this forum so I hope I am posting in the right place! I had a pericardial window 5 days ago and am home recovering.
My story began 2 years ago, (age 49) with a case of periocarditis.  My internist sent me to a cardiologist who diagnosed w/echo. The ibuprofen/10 day treatment worked and I was fine. Then, last Dec., I had a bad case of bronchitis. Two weeks later I had weird shortness of breath. More like "air hunger" and sometimes the shortness felt like it was in my throat.  I self diagnosed with "anxiety" but he said it was now a pericardial effusion. Small though. Two rounds of Ibuprofen didn't help. He wanted to do the Window a few months ago but I kept dragging my feet. Finally, I got a second opinion who agreed with the window treatment. Meanwhile, blood work all turned up negative for Lupus, RA, and other issues.
 
I had the surgery Friday and the chest tube removed on Monday. Which, I  have to say was the most SHOCKING pain I've ever imagined. Worse than natural childbirth! The pathology reports were all negative so the final verdict is that it was an unknown virus that caused the effusion and I should be fine now.
 
Here's a few post op questions for anyone who has had the Window. (left side video assisted)
I am having night sweats, day sweats, chills, is that normal? It's not hormonal since I take estrogen.
Pain is significant but getting better.  How long will that last?
Can the effusions come back? I don't understand that unless the window somehow seals over?
I cancelled an appointment with a very well renowned Rheumy when they said the path was all clear. I hope that wasn't a mistake.
 
Thanks in advance for any thoughts.
This is such a weird/unpredictable condition. I don't know ANYONE who has had this.
 
 

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/25/2009 5:35 PM (GMT -6)   
Hello and welcome to HealingWell.  I am glad to hear you tolerated your procedure well but sorry to learn of your current concerns.

Yes pulling the tube can be a real eye opener and Ouch !!

Wondering if you are checking your temperature as you could be running a fever?  Also I do think it would be prudent to contact your Cardiologist to discuss your concerns.
 
I believe you have a right to your anxiety as you have been through alot but do give yourself permission to reach out to the medical community to seek answers to any questions you may have.
 
Are you having arthritic sx ? 
 
Please stick with us and perhaps a member will have more information for you.
 
Gentle Hugs
 
Kitt
 
 
 
 


 

Kitt,
Moderator: Osteoarthritis, GERD/Heartburn
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BamaFan
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/25/2009 6:10 PM (GMT -6)   
Temp is normal. What is arthritic sx?

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/25/2009 10:07 PM (GMT -6)   

Symptoms of arthritis...........  :)  You mentioned cancelling an appointment with a Rheumy .

Kitt



lojohns
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/5/2009 8:03 PM (GMT -6)   
I had a pericardial window 3 months ago and can agree with everything that is happening to you.  I have hot flashes, recurring pain for no reason and will have days...weeks that I feel great and then out of nowhere, I get pain and pressure on my chest and down my arm.  I'm trying to see if there is any pattern to the pain.  Right now, it has been 3 weeks since the last episode and it is back as of today.  No diagnosis for me either, so no one knows why this is happening.  I don't think the fluid has returned, just pain.  If you figure out any reason for what you are going thru, let me know.

BamaFan
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 10/5/2009 8:46 PM (GMT -6)   
Do you think some of your pain is nerve pain from surgery?
I've been having severe pain in my chest that's much worse at night. Nothing helps, including the lortab which is worthless in my opinion. Have you had that kind of pain? The doc told me it could travel from the chest to the shoulder blade or neck.
Great!

Snugs
New Member


Date Joined Apr 2011
Total Posts : 1
   Posted 4/8/2011 9:19 AM (GMT -6)   
I had pericardial window done 4 months ago and still have pain at my incision site and left side on and off. I'm now having hot flashes and chest burning and pain and tightness in my left shoulder and left arm. I'm wondering if it might be inflammation? Maybe ibuprofen might help? My effusion was caused by an echovirus, could it return? I definitely have some nerve pain that radiates to my left ear too. Its good to hear about others experiences, to be able to compare and make some sense out of the symptoms. smilewinkgrin

Mnm189
New Member


Date Joined Nov 2012
Total Posts : 2
   Posted 11/3/2012 3:01 AM (GMT -6)   
I am new to the site. I have just had a pericardial window and i can honestly say its been no picnic. The chest tube was excruciating. But i havent felt that great after either. The hot flashes come on a normal basis. The doctors actually have me on prednisone to keep the the inflammation at bay with a side of colchcine. It truely feels like a never ending story. I have seen more doctors then i cancount and this has been progressing for 6 months now. I can confirm that prednisone is one of the most dibilitating drugs out there. It has slowly decreased my muscle mass to the point where my body has no muscle. My jointsfeel aweful and my teeth have become super sensitive. My hair comes out very easily as well and my stomach is in constant pain, which the doctors are trying to heal with pepcid. The colchcine is not too bad. I would prefer just taking those but be aware if you are taking the prednisone take it carefully. I missed a dose and almost ended up in the hospital. I find it a bit shocking there isnt more information aboutbpericarditis and pericardial effusions online. I had my operation and cant seem to find much post op info. Its very frustrating and debilitating. I have been home for two weeks trying to recover but not feeling a whole lot better. I need to return to work but everything seems quite difficult.

Any advice?

SummerWind
New Member


Date Joined Sep 2014
Total Posts : 1
   Posted 9/30/2014 4:09 PM (GMT -6)   
Hello, I'm a 46 year old woman with polycystic kidney disease and stage 4 renal failure. My pericardial effusion was due to the kidneys not functioning properly. I just had a pericardial window done last Thursday. I'm not in excruciating pain, but I feel like the fluid is still there. I have trouble sleeping on my side and I still feel short of breath. I really want to and need to go back to work tomorrow. Is what I am feeling normal or should I notify my doctor.
SummerWind turn

Yes2Yess
New Member


Date Joined Jul 2016
Total Posts : 1
   Posted 7/11/2016 2:52 PM (GMT -6)   
Hi, I am 40 years old and had surgery for pericardial Effusion 3 weeks ago. I feel better; am still in shock on how it all happened. It felt like a spasm by my heart. I thought I had pulled something. But when I couldn't sleep) lay back, or lean forward, I knew something was wrong. Fluid around my heart wasn't decreasing after prescribing colchocine. I saw my cardiologist at 9:30am and by 12pm I was in surgery :( 2 days before my 40th birthday. They pulled out over 800cc's of liquid. The pain of the tube removal was insane. Seriously, the dr. did not prepare me for it. She just kept pulling and pulling like a magician's handkerchief act. Procedure was done on a Monday and I was released on a Wednesday with two incisions on my chest. Seriously, very nonchalant. Wasn't this heart surgery or close to it?? rolleyes The results came back inconclusive so no known cause. Kind of scary. I also read that there's a 30% chance of reoccurring. I'm on short term disability for 4 weeks but feel like I need more, at least until the incisions are fully closed! I still can't sleep on my left side as I feel a heaviness, I'm guessing from the surgery. Also I'm in pain in the am and pm as I can't move around too much. I'm hoping my dr extends my stay. Did I mention I am still shocked on how this all happened?

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19304
   Posted 7/13/2016 12:19 AM (GMT -6)   
yess, hi. very old thread. forum can be slow. but yes some cardiologists don't beat around the bush. the pain will subside, sleepin' on ya back is good, especially for air intake. sometimes you can sleep a little propped up. keep strong, nonchalant is standard practice for some whom like to show pony....every field of medicine has these types. your alive, so, keep strong. start a thread, get more hits. cheers.
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dwoodie22
New Member


Date Joined Oct 2016
Total Posts : 1
   Posted 10/5/2016 7:43 AM (GMT -6)   
Good morning. I'm also trying to get answers to questions about pericardium window procedure. I had a catheter ablation last Friday to correct bigimeny PVC's that had lasted for 6 weeks. Everything went great and they talking about letting me go home later that night. But while I was still under in the OR, they found that the percardium was rapidly filling with fluid so they had to do the procedure quickly or it would not have been good for me. When I woke up, I thought I was dying. They had already removed the drain tube but I stayed in CCU overnight as a precaution. This was totally not expected from the ablation and I had no idea anything like that could happen. I can find very little on line about what is normal after this procedure. I am on colchicine for 3 months but there was no mention of ibuprofen or anti-inflammatories being used. I still have quite a bit of pain at time across my chest and still can't lay flat to sleep. Anytime I reach for something or even open a drawer it seems to make my chest hurt again. Is all of this normal and can anyone let me know when they were released to return to work after the procedure. The doctor's office was supposed to call me back yesterday but didn't. Guess I'll be calling them to try to get some answers also.

Olemissgirl
New Member


Date Joined May 2017
Total Posts : 1
   Posted 5/5/2017 12:20 AM (GMT -6)   
Hello, I know this thread is rather old but it looks like people have commented on it within the last 8 months. I'm not one to post on stuff like this but if my story helps just one person, it will be worth it.

So for starters in 2011 at 21 years old I was diagnosed with a small trivial pericardial effusion. I was sent to a cardiologist who told me it wasn't anything to be alarmed about, he told me I needed to go on and live my life. Fast forward to 2013, I had a scan done for something digestive related & the scan picked up a mild pericardial effusion. A cardiologist ran another echo & said that the fluid was still of no concern to my health and wellbeing. I had bloodwork done for rheumatoid arthritis and lupus, all of which came back negative. Fast forward again to 2016 at 26 years old on my birthday of all days. I went to a clinic due to a sore throat. The on call doctor listened to my heart & heard a very strong murmur. It concerned him & he asked me about my heart history. I told him I had been told I had a pericardial effusion and his eyes bugged out of his head. He wanted to know why a young, otherwise very healthy female would have a pericardial effusion. (Note that I was living in a different city at this time). So, thank God for this on call doctor who sent me to a cardiologists. I had an echo done & aftwrwards, the nurses were drilling me on my family history, etc. I could tell that something serious must have been spotted on my echo. They were just acting kinda odd. They told me the cardiologist would be right in. When the cardio doctor came in, he told me that I had a very large pericardial effusion but it wasn't too the point of tamponade. He asked me if I had been having any symptoms...I told him other than shortness of breath when walking I was usually ok. I thought my shortness of breath was due to a mild mitral valve regurgitation. He told me it was apparent that the effusion had developed over several years because if the amount of fluid I had at the time would've come on suddenly, it would have killed me. This was a scary time for me and he put me on colchicine and naproxen to treat my effusion. I came back to him 2 weeks later with zero improvement. He sent me onto a cardiovascular surgeon who did a PERICARDIAL WINDOW SURGERY. This was in May, 2016.

For that surgery, I was in the hospital 10 days draining a little over 2 liters of fluid through my chest tube. I have never felt so terrible in my entire life and I honestly didn't know pain could be so severe. The nurses face me dilaudid through my IV and alternated it with Percocet every several hours to control the pain of the tube which felt like a sword in my left side.

Anyway, my biopsies came back negative for cancer and any of the other nasty stuff. Praise God! My surgeon told me that I had a 2% chance of the fluid ever coming back. (Ha!...just read on)

2 months (July 2016) later I was having SEVERE shortness of breath. I honestly felt like I was carrying weights around in the left side of my chest. My mom took me to the ER & I had developed large pleural effusions now. Needless to say, I was admitted to the hospital. The doctor performed a thoracentesis which actually wasn't as bad as I had worked it up to be. I was so relieved to have the fluid removed from around my lungs. The doc pulled off 1.2 liters of bloody fluid. I was shocked and terrified when I saw it. They did x-rays after that were still showing large pleural effusions. So, after that I was still not much better. I then had surgery on my left lung called video assisted thorascopy (VATS). I had yet another CHEST TUBE. . Oh my oh my I never dreamed I would deal with one of those again, especially so soon. I also had 2 lung biopsies during this surgery due to some nodules on my lungs (NOTE: I have never smoked a day in my life and I do not drink alcohol). . I spent 15 days in the hospital and 5 of those days were in the cardiac ICU. I ended up having another surgery where they inserted a pleurx catheter in my left chest cavity so I could go home from the hospital. I was also sent home on 60mg of Predisone (hello moon face and weight gain).

THE DIAGNOSIS: After discharge from the hospital I was sent to a rheumatologist. I had blood work with a +ANA for lupus while I was in the hospital during July, but also had some tests that came back -ANA for lupus. I had blood work that showed a lot of inflammation in my body and also had protein spotted in my urine. My rheumatologist warmed me that lupus or any of the autoimmune diseases that can cause such things as pericardial/pleural effusions are incredibly tricky to diagnose. My rheumatologist put me on Cellcept and started a slow taper of my prednisone. I am now 27 years old and it's a solid year since all of the crazy surgeries and chest tubes. I am truly a true testament of answered prayer and God's healing power. I still have many difficulties with fatigue, muscle aches, hair loss & some occasional shortness of breath..but I see a wonderful rheumatologist who is so kind & incredible attentive to running regular tests, monitoring my medication, etc.

MY POINT IN THIS WHOLE STORY:
If you have any type of pericardial or plural effusion. Don't let a doctor try to tell you it's no big deal. You know your body best & let me tell you, its not normal to have fluid like I did around the heart or lungs (although we all have a little bit of fluid naturally, which you can read about on Google). Anyway, if you are diagnose with effusions GO TO A RHEUMATOLGIST. They can run a great series of bloodwork & other lab work to diagnose your problem. Don't give up until you have a diagnosis. God bless you!

Post Edited (Olemissgirl) : 5/5/2017 12:28:36 AM (GMT-6)

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