Pericardial Resection/Window - HFpEF, Pericardial Effusion

Posted by Rob Schweiger @robschweiger, Jul 3, 2019

Mayo has just begun a clinical trial involving percutaneous pericardial resection … in effect, making a longitudinal cut through the chest muscle and pericardium in order to possibly provide relief to a hard, stiff heart muscle. This will occur in the cardio cath lab at the St. Mary’s campus. I’m interested in hearing from anyone who has undergone this or a similar procedure. Also interested in hearing from anyone with HFpEF that has no “usual” symptoms other than inability to exercise and major exhaustion

Hi @robschweiger @ninimurphy

Here is detailed information about the trial:
Minimally Invasive Pericardiotomy as a New Treatment for Heart Failure https://www.clinicaltrials.gov/ct2/show/NCT03923673

You might also be interested in reading this journal paper to learn more about the procedure:
Percutaneous Pericardial Resection https://www.ahajournals.org/doi/10.1161/CIRCHEARTFAILURE.116.003612

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@kanaazpereira

Hi @robschweiger @ninimurphy

Here is detailed information about the trial:
Minimally Invasive Pericardiotomy as a New Treatment for Heart Failure https://www.clinicaltrials.gov/ct2/show/NCT03923673

You might also be interested in reading this journal paper to learn more about the procedure:
Percutaneous Pericardial Resection https://www.ahajournals.org/doi/10.1161/CIRCHEARTFAILURE.116.003612

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I appreciate the effort you made to reference the clinical trial and research paper. However, I already had reviewed both quite a while ago. In fact, I was scheduled to be the first research human being to undergo the procedure but due to scheduling problems in the spring, I was unable to do so. Other developments then led me to not undergo the procedure yet. I am keenly interested in knowing how the first patient did. I believe there will be a second patient this week or next and then a third patient. If Dr. Borlaug is successful with this new clinical trial, it would indeed be a game changer for other patients such as myself with HFpEF. Looking forward to hearing more about this when it is available.

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I went into my prompt care for a cough I had been having for a few months, and as I have a history of melanoma I asked for a chest xray. That came back irregular, which sent me to get a CT. That showed a large pericardial effusion as well as a tumor. They sent me to ER but heart function was normal aside from the effusion so I was to go home then back for a needle biopsy on the tumor. While doing the needle biopsy my lung got punctured and I ended up going back to the ER, which resulted in an 11 day hospital stay as the ER Dr. did not like how the pericardial effusion looked when seeing it on an echo. I had a chest tube for lungs, another lymph node removed, and a catheter for the pericardial effusion. The catheter was tried unsuccessfully 3 times, but the fluid kept coming back. It tested positive for melanoma, which I had at a stage 1B back in 2013. We finally decided to do the pericardial window. I had the drain in for a little more than 3 weeks. When pulled it had been 75 cc or a little below for a few days, and a few days before that it was at 100 cc. Obviously I am glad to have it out, and none of the Drs seemed worried at all. I am of course worried, every time I cough I think it is coming back. From what I understand, the window is a permanent solution to prevent it from building up again, and if it does come back it should just go directly to waste and not do any harm. Is this correct? Is there a possibility of this coming back and having to have more surgery? My Dr said that they had not seen that happen. I am not able to find a lot online. Thanks for any help!!

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Hi @katyb879,

Welcome to Connect. I moved your message and combined it with this existing discussion as I thought it would be beneficial for you to be introduced to fellow members who are discussing the pericardial resection/pericardial window procedure.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

I’m tagging @notallwhowanderarelost @gailkattouf @dclo, and I hope they will join in with their insights about this procedure. @sbrooks1986 has also written about the pericardial window surgery in this discussion, https://connect.mayoclinic.org/discussion/hello-i-am-a-29-yr-old-female-who-had-a-pericardial/

With regard to recurrence, here are two (encouraging:) published studies you might wish to go through:
– Outcomes after pericardial window surgery (PWS) for palliation of malignant pericardial effusion (MPE). https://ascopubs.org/doi/abs/10.1200/JCO.2018.36.15_suppl.e22193
– Pericardial-peritoneal window for malignant pericardial effusion http://shc.amegroups.com/article/view/4333/5128

@katyb879, I can imagine you wouldn’t want to go through another surgery! Have your doctors offered any other alternatives, if you suspect fluid is building up again?

Liked by Leonard

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@katyb879

I went into my prompt care for a cough I had been having for a few months, and as I have a history of melanoma I asked for a chest xray. That came back irregular, which sent me to get a CT. That showed a large pericardial effusion as well as a tumor. They sent me to ER but heart function was normal aside from the effusion so I was to go home then back for a needle biopsy on the tumor. While doing the needle biopsy my lung got punctured and I ended up going back to the ER, which resulted in an 11 day hospital stay as the ER Dr. did not like how the pericardial effusion looked when seeing it on an echo. I had a chest tube for lungs, another lymph node removed, and a catheter for the pericardial effusion. The catheter was tried unsuccessfully 3 times, but the fluid kept coming back. It tested positive for melanoma, which I had at a stage 1B back in 2013. We finally decided to do the pericardial window. I had the drain in for a little more than 3 weeks. When pulled it had been 75 cc or a little below for a few days, and a few days before that it was at 100 cc. Obviously I am glad to have it out, and none of the Drs seemed worried at all. I am of course worried, every time I cough I think it is coming back. From what I understand, the window is a permanent solution to prevent it from building up again, and if it does come back it should just go directly to waste and not do any harm. Is this correct? Is there a possibility of this coming back and having to have more surgery? My Dr said that they had not seen that happen. I am not able to find a lot online. Thanks for any help!!

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@katyb879
Hi there,
Sadly, things don’t always go as planned.
My cousin also had pericardial effusion. He had two pericardiocentesis procedures which removed a lot of fluid. The fluid quickly
re-accumulated so he had a pericardial window. This too failed to control the large amount of fluid so a second window was done, this time a subxiphoid window. It too was unsuccessful so they had to remove as much of his pericardium as possible. This was successful however during one of the surgeries a nerve was damaged or cut, probably the phrenic nerve that controls the diaphragm. Now some of his abdominal organs are in his chest and because the diaphragm is partially paralyzed he’s on oxygen 24/7. The cause of the fluid has never been determined.
Good luck,
Jake

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The discussion of pericardial effusion should not have been combined with the discussion of the clinical trial I was involved with for HFpEF. The only commonality was that the percutaneous pericardial resection clinical trial I was involved with was initially going to have a subxiphoid window for drainage purposes when they were going to make the cut through the pericardium. The purpose of making the cut, theoretically, was to relieve wedge pressure in the left ventricle.
I am again requesting the Connect moderator to not combine these two subjects

Liked by Leonard

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Hi @robschweiger,

Thank you for all the support and information you are offering – I sincerely appreciate your making Connect members aware of the clinical trial led by Dr. Borlaug. I think I can understand your objection with regard to the merging of the two discussions. Since you remarked, "The discussion of pericardial effusion should not have been combined with the discussion of the clinical trial I was involved with for HFpEF,” I hope I can offer some clarification as to my reasons for combining the two threads.

Both procedures – percutaneous pericardial resection and pericardial window – effectively relieve pressure from around the heart, whether that pressure is caused by fluid or the heart muscle (stiff). Hence, rather than discern differences between symptoms and conditions, I noted the similarities between the two procedures – albeit percutaneous pericardial resection is yet an “experimental” therapy.

Most importantly, I was hoping to ‘connect’ you with fellow members – as you mentioned in the very first post of this discussion – "I’m interested in hearing from anyone who has undergone this or a similar procedure.”

Mayo Clinic Connect is a patient-to-patient community – the most important ingredient of Connect is its members, like you. It is not designed to be a community for medical experts, but is a place to learn from all your shared experiences, insights, suggestions, and tips. On the other hand, you can view Mayo Clinic experts talking about various health conditions, treatments, published studies, etc. by visiting the Connect Pages at https://connect.mayoclinic.org/pages/

I want to assure you that my intention is only to help, not dictate or influence your participation in any way. I just hope to help you reach as many people as possible. Should you have further questions, feel free to let me know and I will do my best to address your concerns.
I look forward to your continued participation on Connect.

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Hi @robschweiger,

I was wondering how you’re doing – did you undergo the procedure?

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I cancelled my participation in the clinical trial because once I got further into the details, it was going to be anything but "minimally invasive." I found out from one of the surgeons involved that they would now do it by cutting through the chest muscles in addition to putting a drain between my ribs. For this, they would allot one day in the hospital. Mayo then expected me to recover after that in a nearby motel. The time I would have to spend in Rochester would be a week or so … at my expense; and I had the feeling that I wasn't going to be in any shape to recover in a motel, make my way back and forth to Mayo for further testing; then make my way back to FL on my own. I decided if I was going to be a guinea pig, it wasn't going to be on those terms.

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@robschweiger

I cancelled my participation in the clinical trial because once I got further into the details, it was going to be anything but "minimally invasive." I found out from one of the surgeons involved that they would now do it by cutting through the chest muscles in addition to putting a drain between my ribs. For this, they would allot one day in the hospital. Mayo then expected me to recover after that in a nearby motel. The time I would have to spend in Rochester would be a week or so … at my expense; and I had the feeling that I wasn't going to be in any shape to recover in a motel, make my way back and forth to Mayo for further testing; then make my way back to FL on my own. I decided if I was going to be a guinea pig, it wasn't going to be on those terms.

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I’m truly sorry to hear that, @robschweiger. May I ask if your doctor has provided any “next steps”? How are you coping with HFpEF at present?

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No, Dr Borlaug and I know there are no “next steps” for HFpEF patients such as myself. He is aware I’m seeking treatment through an interatrial cardio implant through Corvia in Germany. I would be most interested in learning how the clinical trial that I was supposed to be in at Mayo is doing and what happened with the other patients he was able to procure. Obviously, I do not want confidential patient information but it would be helpful to me and my local doctor to know if the clinical trial so far has proved successful or has it resulted in complications as I suspect.

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@robschweiger

No, Dr Borlaug and I know there are no “next steps” for HFpEF patients such as myself. He is aware I’m seeking treatment through an interatrial cardio implant through Corvia in Germany. I would be most interested in learning how the clinical trial that I was supposed to be in at Mayo is doing and what happened with the other patients he was able to procure. Obviously, I do not want confidential patient information but it would be helpful to me and my local doctor to know if the clinical trial so far has proved successful or has it resulted in complications as I suspect.

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I should have added that the latest issue (Vol 17, No. 2 2019) of the Mayo Cardiovascular Update features this "Minimal Invasive Pericardiectomy for Treatment of HFpEF." Again, my major objection is that this is not at all a "minimal invasive" procedure. Hopefully, we all can get an update on this procedure from Mayo

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Just looking for conversation.

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@12regina12

Just looking for conversation.

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Hi @12regina12 and Welcome to Connect. I moved your message and combined it with this existing discussion to help you connect with others talking about HFpEF. If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

You may also be interested in this video and discussion.
Confused about Stiff Heart, Diastolic Heart Failure, or HFpEF? https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/

Regina, what other conditions are you managing along with HFpEF?

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@colleenyoung

Hi @12regina12 and Welcome to Connect. I moved your message and combined it with this existing discussion to help you connect with others talking about HFpEF. If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

You may also be interested in this video and discussion.
Confused about Stiff Heart, Diastolic Heart Failure, or HFpEF? https://connect.mayoclinic.org/discussion/confused-about-stiff-heart-diastolic-heart-failure-or-hfpef/

Regina, what other conditions are you managing along with HFpEF?

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Hi Regina. I was diagnosed in January of 2015. I now have chronic Afib and it is being managed by medication. I still am able to walk most days and feel pretty darn good. How about you?

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