Pericardiectomy - Part II

Diseases & Conditions Heart & Cardiovascular Disease
121
Hi Nan:
By all means get the abdominal swelling checked by your doctor.  I've had several episodes that sound like what you are experiencing. The doctor called it "Ascites" in my case, which meant pooling of fluids in my abdomen.  It was discovered again recently on a CT scan and the doctors think it is related to my adverse reaction to ace inhibitors (Amlodipine and Diltiazam).  Since I've been taken off that medication, I find I can control it effectively with Bumex (like lasix) and am getting to the place where I don't have to take the fluid pill but every three or four days.  I'm also plagued by pulmonary effusion (fluid in the space around the outside of the lungs) at the same time I have the abdominal fluid.  There are so many causes other than CHF it's really important to get it checked.  I monitor mine by weighing every day.  Usually I'm up at least seven pounds before I can even detect it and then it increases pretty rapidly.  I hope this helps.  Call the doc for sure.
Les
122
Thanks everyone...today is a little better but still not quite right. I'll call tomorrow! Although I've called with other things a couple times and the follow-up leaves a little to be desired...and I don't really want to see a doc here. It's quite a drive to Mayo...I'll keep you posted...thanks again....all input helps.

Nan
123
Hi Les, thanks for your input! Sorry to hear you're having problems with ascites as well-did they tell you why this was happening to you? Is it from the constrictive pericarditis?-the surgery? Or something else? We all know there can be side effects to all of these things, though we all always hope for the best. I was told that I had ascites with my heart failure, but if it was, it resolved on it's own and the only thing that was noted on a CT Scan was a small pool of water lying behind the liver afterwards and my Cardiologist said it was from a prior episode of active heart failure. You please take care and keep in touch with us, okay?!

Nan, you take care of yourself!!

Hugs, Teri :)

"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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124
Nan,
I have read about what is happening with you; and they talk about post-pericardiectomy.  Altho most of the doctor's will tell you that you can not develop calcification again because the pericardium is gone, I have read that the symptoms can return, and I am still unsure why.  Is it possible for you to contact your cardiothorasic surgeon who operated on you on the phone?  IF so, call in as many messages to him as possible.  Any signs of swelling, ascites...fatigue is your body trying to tell you something and needs to be checked right away.  I will be speaking with Dr. Klein this week; and when I do I will ask him about the symptoms returning after the surgery, and if so, why.  SO, as soon as I hear, I will be sure to let you know.  But, I hope you find out much quicker from your surgeon, and even if you can contact him, also, leave messages with the cardiogist that was involved in your case.  I know what they are going to say, because you were due for a six month checkup, so they are going to tell you to come in, but try drilling them on the phone to get answers first.  I wish I could remember where I read about the symptoms returning, but I will keep looking until I find it.
Good luck, and don't worry...stress does not help!
 
Teri, no problemo on the book post, all I wanted to get across was the author and name, so, they can find locate it.
 
My ascites never leaves anymore; and the water pills are no longer working, so I feel like a bloated whale constantly...I wish they knew more about this, but they don't, and because its rare, they are not going to do a whole lot of studies on it.  One thing I have learned from this whole site, is it is NOT as rare as they would like to admit, I am in shock over the short amount of time I have been here the people that have had this.  They tried to tell me at some hospitals that they had seen only one or two cases in the history of their hospital.  How could that be possible, when this site alone as seen what ten cases or more so far???  STrange..
Cathy
125
Nan,
one thing it did say in the book I just bought was:
"In a minority of patients, significant left ventricular systolic dysfunction may follow pericardiectomy and may persist for several months.  the causes of this syndrome are not known, but, like the slow improvement in diastolic function, may be related to the sudden removal of a strong external constraining force on the atrophic myocardium.  It responds to standard treatment for heart failure and, in my experience always eventually resolves."
 
 
The other quote I was looking for before that I wanted to share with you was something Riolanus said in 1649 his prediction was "It will one day come within the province of surgery to deliver the heart from the shell that strangles it". 
 
Hard to believe that as early as that, they understood what was happening, and knew that in some cases the pericardium needed to be removed.  Amazing...
 
anyway, Nan, I surely hope this too shall pass, as with me headed into surgery one of the things I was looking forward to most was the ascites going away.  Its tiring and is difficult to live with.  I can't wait to hit my doctor's with this, to see what their reply is.
Cath
126

Interesting article about a girl who's father had a pericardiectomy...

http://money.cnn.com/2003/10/10/pf/health_how_to_research_full/

Nan, did Dr. Schaff do your surgery?  In this article, they ended up going to Mayo; and he preformed the surgery and the name looked familiar...Cathy

127

also, found the study that The Mayo Clinic did, the one entitled

"calclfic constrictive pericarditis, is it still with us?"

if your interested in reading, it is very informative, and it gives the stats on quite a few patients..

http://www.annals.org/cgi/reprint/132/6/444.pdf

you may need adobe reader to be able to view it, but its a free download..

 

128

 Nan,

I couldn't sleep last night and wrote a letter to Dr. Schaeff's office, as I told you, I had been there and they have tests results on me there, well, they already called me this morning, and Dr. Oh and Dr. Schaeff are interested in doing my surgery.  I am wondering, since they do 30 to 40 a year, if I would be better off there.  At any rate, I am going to call Dr. Oh back and ask him if our symptoms can return after surgery and if so, why.  I will let you know what they say.  Is this who operated on you?  I am totally confused now on where to go, because Lytle will not tell me how many they do a year, and if you read that article that I gave the link to its about a woman who's father had surgery at Mt Sinai and it was a disaster, so they called Cleveland who did not return their calls, but then called Mayo; and they responded, long story short, he went to Mayo, had to be opened up again, Dr. Schaeff did the surgery and it was successful.

I am completely perplexed now, everything is set for Cleveland, airline tickets are purchased, and I have already prepaid two thousand dollars in a hotel bill that is non refundable at this time.  I just wish Dr. Lytle would come clean on how many they do a year....whaddayathink??

129
Wow, that was really excellent, Cathy!!!  The info~it's wonderful!  I particularly loved the quote from 1649-so much that has been learned, yet still so much to learn! 
 
Re the rareness of pericarditis and pericardiectomies...my Cardiac Dr. told me (remember when I had my discussion with him?) that it is extremely rare!-I said, well that may be true, but you should see how many people I have coming on the heart forum at HealingWell!  He said, yes, but you have to take into consideration that this is nationwide and from all over the world that people come together to talk and discuss this. 
 
I would guess that is true!  (We did have someone here from outside the US-it's on the other thread (Part I).)
 
This is so far the only heart forum here at HealingWell that I've even seen this discussed-that's why I'd never heard about it before.
 
So that's why I value everyone's input on all of this~I'm learning right along with you with great interest!!
 
Cathy, you take care of yourself, I know this is starting to be the uncomfortable, nervous part for you, I'm sending big hugs from Texas to you, Teri tongue
 
Mister, still thinking of you and hoping you are well!!!

"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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Post Edited (Teri16) : 6/6/2005 10:38:55 AM (GMT-6)

130

hey guys, sorry I posted so much...

just spoke to mayo, I just missed dr. oh, he just headed off to a meeting, he will me out by 1:00, and they said he will return my call the second he is out...Nan, I will find out why this is happening....i too, am concerned as I am sure I was told that the symptoms would completely resolve after the pericardium is removed.  SO, the second he calls me, I will let you know on why you are having these problems.  Cath

131

teri, i completely agree about us all graviting to this site, as it is the only one, but, it still seems to be a lot of people, and not just here, I met at least ten others that have contacted me because of the newspaper article.  I will surely bring this up to the surgeon's, because if they realize there are these many cases, and not due to TB, but idiotpathic, they may wish to due more research on it.

When i was at Cedar Sinai Medical Center in LA, they told me they had seen four cases in the history of their hospital...and I wonder how many cases go to hospitals in their hometown that are never recorded.  So many people, like that article stated just go with doctor who diagnoses him.  Honestly, had I done that, I would have had the surgery done here in Vegas, where it has never been done.  SO many people look at doctor's as God's, and put so much faith into them, when the best thing to do is to seek out the best in that field.  That couple I had told you about....Sammy, he had surgery in University of Birmingham, they had told him he would be in surgery for over eight hours, his calcification was over an inch thick...it was a diaster, after two hours the surgeon came out and told them that was all he could do.  He disappeared and never was seen again by them.  HE barely removed any, and now Sammy is so tramatized he won't go back, and now he needs a heart transplant and refuses.  His wife is beside herself.  If you go to The Cleveland Heart Forum, you will see many posts from her...her name is "little debbie...and its a great site....you will see her posts, and she was beside herself looking for answers.  There are quite a few q & a's on constrictive pericarditis, so you will find it interesting...go to browse archives, and you will see pericarditis..

http://www.medhelp.org/forums/cardio/

Thanks Ter, your right, I am getting a bit nervous now..I have been reading everything I can..14 days to go; and everywhere it says how risky this surgery is, and it does wear on a person...but don't worry...I am going....no matter what....Cath    btw...i am done posting until i hear from dr. oh..i have got to try to sleep...

  
 
132
Okay Nan, Dr. Oh from MAYO just returned my call, and he said symptoms returning depend on a lot of factors, first, did they remove your entire pericardium?  He said sometimes, they don't, in the AV groove area, where it is more difficult to reach.  He said that in most cases, symptoms do not return unless it is a partial pericardiectomy.  I would call your surgeon's office and ask if they removed your entire pericardium.  Also, feel free to call Dr. Oh's office, with your records being there, he can access them, and will surely call you back.
I am still waiting to hear from Klein at Cleveland, they don't seem to be as good about returning calls.
Dr. Oh told me they did 59 pericardiectomys last year, and already 20 this year.  4 to 6%  did not make it either due to death in surgery, or low cardiac output after.  I don't see how I can cancel and go to Mayo now, I am in too deep with airlines and hotels...I am anxious for Klein to call me back with their stats.
Hope this helps.
cathy
133

Hi!  Great information Cathy...I swear I'm like a sponge and just want to soak up anything I can find.  I had read some of the articles from Mayo but the article about choosing the right hospital was really interesting.  I'm feeling a lot better today...back to "normal" so to speak.  I no longer look pregnant.  I really appreciate the articles and the info.

Yes...Dr. Schaff did my surgery.  He told me they do more there than anywhere in the world and that is 50-60 a year...so that fits right in with what Dr. Oh told you.  Hard to believe they've already done 20 this year! 

I think there are chances that this is not as rare as it may seem...there is such a lack of knowledge that you have to wonder if there aren't a ton of missed dx. 

I do think I had my whole pericardium removed...and by that I mean the entire front.  I don't believe they ever remove the back but I could be wrong on that.

Cathy...Schaff is like a god around there...anyone that heard he did my surgery said he is the best which of course made me feel better...when could they get you in?  I hear what you are saying about all of the arrangements but make your decision as if none of that had been done yet.  Flights can be redirected.  Cleveland is supposed to be the best...Mayo is good too...you are in good hands either way.  I'd keep demanding the info from Lytle though just to put your mind at ease.  Please keep me posted!

Thanks for all of your info...thanks for asking those questions to the surgeons...I really appreciate it. 

Nan

134

Hey Nan,

Your more than welcome...you and I are a lot alike, I am the same way, I have to educate myself on everything.  A lot of people say I should bury my head in the sand, and say what I don't know won't hurt me, but like that article, I did that in my life once....when my son's were born,...we kept asking if they should be moved to another hospital in town, and they assured me they were fine where they were...(at the time, we had insurance that covered 100%) but we were watching Mothers come in that didn't have insurance, and they were shipped down the road.  Come to find out later..I found out their were different levels of neo-natal units, and when we asked, they told us, oh, if you go there, their are so many babies, they are at such a higher risk of infection.  Dummy us, having twins...we were in a hospital with ONE neonatogist, and the other hospital had two on duty 27/7..long story short, the doctor went home after administering exosyrup, which the package insert states to have a DOCTOR present for twenty minutes after, he was tired and went home right after he gave it to my son's.  My some strange twist of fate, I was present, it was my first time seeing the babies, and my one son's alarm went crazy, and he was suffocating,he formed the mucus plus and was turning blue...needless to say the next cat scan showed a grade four IV brain bleed. At the time, they told us, that he could be blind, deaf, retarded, or have CP, or ALL FOUR.  We were extremely blessed because the odds were so against us, but he escaped them all but one...and he has mild muscle tightness on his right side...needless to say he will never be a concert pianist or watch maker...but, it all could have been avoided. Lesson learned..never settle, find out all the INFO you can..and if you need to travel, eat beans and weenies, but find the BEST!!  ANYWAY, enough of that....Nan, I wish I would have picked MAYO...When Julie got back on the phone after I spoke with Dr. Jae K. Oh, she said I could get in right away....literally within a week if I wanted.  SO, the time issue is not a problem.  The problem is they charged my credit card two thousand dollars for the hotel for Ty and Shane and Ned already, they told me NO REFUND...and Miracle Flights already booked the tickets, and so did my brother, and two friends and Mother.  I am 13 days away, I hope I didn't make a huge mistake again.

YOU do need to find out if they did a partial pericardiectomy, or a full....Dr. Oh said that was very important to know.  If you can Nan, GET all your records...I did that from my first visit at Cedar Sinai..to Mayo to Cleveland.  I have every record...film...tape of everything they have done. Call Mayo and tell them you want ALL the records from your surgery, including ALL DOCTORS NOTES.  You will find out things you wouldn't believe.  They have to give them to you, and honestly, its just good to have, espeically when you do not live in the same city as the hospital.  I have copies of every cat scan, MRI and Chest xray film from all three hospitals with every sheet in my file, doctors notes you name it, they will make copies for you.   Espeically having records of your surgery, so you know everything that was done and not done while you were there.  Plus its quite interesting to read, and you being an information hound like me, you will enjoy reading everything that transpired.  In the records there is so much more info there. Dr. Oh told me if you only had a partial pericardiectomy that would explain the abdomen swelling, and, he did not feel that if you were as large as five months, that would not occur from constipation. Your appt for the 21st is for Mayo????? YOU are 100% correct about Dr. Schaeff, I doubt highly Dr. Lytle can beat his record in these...I doubt its even close.  I loved the way Mayo was so open, and they knew the stats right off their head.  When I called Lytle's office and spoke to the nurse, she said, I doubt Dr. Lytle knows right off his head how many he has done, and I said, well, I called Mayo; they knew without looking. She told me Lytle was leaving FOR VACATION AGAIN, and transfered me to Kleins office,  she said he would call back,but he has yet too.  Mayo communicates so much better.  I think I am stuck with Cleveland, and I am bummed.  I would love to go to your surgeon, BUT, the one thing I will like if it happens as Lytle said, and that is not cutting me down the middle...instead cutting under the left breast...they say he is one of the only surgeons that has perfected that.  I guess we'll see.  I will be the guinea pig...argggg.  ALso Nan I have heard that removing the back around the AV groove area is most difficult, so if you didn't have calcification there,that might explain the partial.  But find out...!!  One last thing, I agree with you, on the number of cases is not being put out there...this is way too bizarre, and if you head to The Cleveland Heart Forum, there are a good number of people there as well, and how many have this that don't have computers!!   I asked Dr. Oh about the mortality rate on this surgery for me; and he told me that if the calcification is adhered to my heart, it becomes a completely different more complicated surgery, and being that I am severe, they are concerened about that, but he said, "Cathy, you will surely die without surgery, your heart is already failing, at least in surgery you have a shot at life".  I was told I will be in surgery from ten to eighteen hours, if I am adhered, and my MRI is not showing any fluid left between the pericardium and the myocardium.  That is not good, but I will remain positive and dive right in.  One last thing, how is your incisions?  how long is it, and does it stick out?  How far up does it go?  I keep forgetting to ask about that...Cath

135
My 45 year old husband was diagnosed with constrictive pericardits last summer. In August he was sent to Birmingham for surgery. The surgeons removed the 1 1/4" layer of calcification from about 50% of his heart(leaving it on the back & where it penetrated the heart...pulmonary artery area).
He continues to be in poor health,suffering from congestive heart failure. He is short of breath all the time, is slowly retaining fluid(more on the left side of his body),sleeps very little,has pain & soreness in the left jugular vein area, has periods when his lips are numb,& sneezes constantly.
The cardiologists here say he is uncharted territory for them, they can answer very few of our questions.
He is on 20mg. lasix, aldactone,coumadin, & digitalis.
My question is: do we seek more aggressive treatment (& where), or accept that nothing else can be done?
What causes this disease & what is his prognosis?
Thank you very much for ANY info.
D
ccf cardio md - dlb
01/26/2001

Previous radiation treatments, prior chest surgery, and old infections such as tuberculosis are some reasons for constrictive pericarditis. The disease is uncommon and the prognosis even with surgical treatment is often poor. It is possible that he also has heart failure in addition to the constrictive pericarditis and that is why the pericardiectomy was not that helpful. Whether he would benefit from another attempt at pericardiectomy or would be a candidate for heart transplantation are important questions that should be addressed at a referral center that sees cases like this more frequently than most hospitals. We have doctors here who have particular expertise in disorders of the pericardium. You could call and ask for an appointment with Dr. Allen Klein of cardiology, a recognized authority on pericardial diseases.

this was one of the posts from the girl that I have corresponded with for the last two years, I just recieved an email from her yesterday; and she said he still remains in bad health, but does not want to go forth with anything else.  I thought it interesting how Cleveland replied to her questions, what worried me is how they said that even with surgical treatment the prognosis can be poor.  Wasn't every encouraging...I don't understand if you have the surgery, and you survive it, why the outcome would be poor after that?  Love to have your output guys on this.  This was on the Cleveland Heart Forum, and a surgeon answers the questions you post.  whaddayathink?


Post Edited By Moderator (Teri16) : 6/7/2005 1:08:54 PM (GMT-6)

136
Storri,
 
Very interesting posts.
 
My understanding is that our heart is simply compressed by the pericardium...  when partially removed (basically taking off the top cover sitting on he heart) or remove the entire sack going "behind".... the result is the same.  The heart finally freed from the "cage" and can expand freely.  I was told that during surgery they can actually see when the heart "pops out" after the removal and the heart start to beat freely...
 
In some cases it does not "pop out"... or takes a long time...  In these cases there is no improvement, but it does not get worse...  I was told, they don't know why some "pops" others not...  So in some cases even removing the "cage" the heart will continue to utilize the same tight space for "beating"...
 
This is my understanding...  I was told that even with surgery I might not feel better... hopefully won't get much worse.
 
 
137
I didn't edit anything, but was going to, I deferred your post, Cathy, to the administrator, as I'm not sure we are allowed to copy and paste from another heart forum. It is a form of advertising, which is not allowed by our forum guidelines. Hugs, Teri

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138
Mrozek,
 
thank you so much for your info as well!  tongue That was a very apt description you gave.  When will you have your surgery?
 
My best wishes, Teri tongue

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139
This thread is getting really long  (139+ posts) and difficult for new members to follow, please start a new thread, preferably more shorter threads, instead of one long one, which are less cumbersome for members to follow.

Peter

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140
Mister, or any other readers and posters of this thread...we've already started a new one, called Pericarditis and Pericardiectomy Part III...come check it out! 
Hugs, Teri tongue

"Because he is he and I am I."......E. V. Lucas

"I Hope You Dance".............LeeAnn Womack
 
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