Pericarditis & Pericardiectomy Part V

Hi everyone and welcome Specky,

Well I have returned from Mayo. They put me thru the usual series of tests blood labs including sedimentation rate, EKG, chest X-ray, echo, and Ct scan. Only the CT scan showed evidence of a problem. I have a pericardium thickening of slightly greater 3mm and surgery is not an option for me yet. I feel that I am experiencing mild symptoms of CP but Dr Mookadam says my tests do not prove constriction at this point. He has simply diagnosed me with recurrent (chronic) pericarditis. If I develop an acute pericarditis attack I am to follow a high dose, NSAIDS (naprosyn or ibuprofen)3 month taper therapy. In other words I am stuck between a rock and a hard place! If I stay as is, there is daily symptoms to deal with but I am not a candidate for treatment until my symptoms worsen.

In the early stages, has any of you felt lightheadedness in the morning, tightness in the abdominal area or radiating dull pain in left hip , numbness in the extremeties after sleeping for a few hours?  

Having Faith...I think you owe it to yourself to try and get the best medical opinion so if travel is possible, consider Mayo they are accustomed to out of towners and will work with the patient. In my case my HMO denied the referral but I still went because of the potential urgency. Although I think surgery is inevitable, I am trying to buy some time until my PPO kicks in around September.

Specky...you have excellent questions which I would pose as well to the post-surgical group. Who is your cardiologist and surgeon at Mayo? I have been in contact with 1 person who had the surgery about 5 years ago in Washington state and he seems to be living a normal life with no restrictions except possibly major contact sports. Dr Mookadam, my Mayo cardiologist claims a 0% mortality rate and claims that a complete pericardiectomy is possible front and back even with the phrenic nerves with their surgeons. Is that consistent with what you were told? Possibly Nan and Brenda could provide input as well. He also said that constrictive pericarditis does not kill a person but the disease would simply continue to cause heart failure symptoms indefinitely. But this contradicts with everything I have heard so I kind of dispute his claim. Anyone else have an opinion on this?

John

You all ask excellent questions, and its interesting to see the difference in what doctors say.  I was told that a complete pericardiectomy is impossible by the TOP cardiothorasic surgeon at Cleveland Clinic, he said the only way is too TAKE the heart out of your body, and with that carries a lot of danger.  I had surgery three weeks ago, and they cut windows, or islands in the calcification.  Now keep in mind, I was the worst case of calcification they have ever seen..told too me both at The Mayo Clinic and Cleveland Clinic.  I saw Dr. Gordon Danielson, and Dr. J. K. OH at Mayo.  They too concluded that a complete pericardiectomy is very very dangerous.  John99, I had the same NUMBESS at night in my legs, I think that is due to the constriction, your blood is not pumping efficently to the body, and I would JUMP out of bed at night, because my legs would feel like rubber, it was a creepy feeling.  Also, I went to The Cleveland Clinic thinking a pericardiectomy was a CURE.  ITs not.  ANd too be honest, I am quite depressed about it.  I thought if I went though his, I would be able to live a completely normal life.  Their words exactly, "do not expect to ever play tennis, or any high effort activity".  I waited as long as possible to have surgery, and actually was not even diagnosed until I was at 12mm's thick.  SO, my heart was already enlarged, and it caused two valves too leak.  Becuaes I was diagnosed at such a stage, they did not want to operate on me, I was considered...SEVERE..HEAVY calcification, and becaue the mortality rate is HIGH on this surgery, NO matter what any surgeon tells you...it is what Dr. Lytle said, "a BIG BIG SURGERY..a HEART SURGERY LIKE NO OTHER", I actually had trouble on the operating table to the extend that they had to paddle me, and then bailed out of the surgery.  Most pericardiectomys they do are in the mild levels, which will improve success rates, but please remember, they do pericardiectomys for other reasons, and that is for previous cardiac heart patients.  A man can have open heart surgery for other reasons, and develop scar tissue, if this happens, they will go in and remove the scar tissue, its an easy surgery, and ALL doctors use this stat as a pericardiectomy, BUT ask them HOW many they have done for CONSTRICTIVE PERICARDITIS...the numbers CHANGE dramatically.  ALSO constrictive pericarditis can KILL YOU.  I was told that this was a lifesaving operation, and if I did not proceed, I would surely die.  The calcification became so heavy on my right ventricle it actually CAVED it in.  There biggest worry is that my right venticle at atropied......sort of like what your arm does in a case for a long period.  IF that had happened, they would have lost me in surgery, and I was told that from the gitgo.  THey said we hope it bounces back like a ballon if you put your hands on it and squeese...then let go...it bounces back, but, they had NO clue if my heart would do that.  Well, during surgery, it did not do that, but my heart was able to relax a bit enough to not cause complete heart failure.  I realize it is frustrating hearing different stories from different people and differnt surgeons.  I was like a puppy chasing my tail, I traveled to Cedar Sinai Medical Center in LA, then to MAYO, then to CLeveland.  Not one of the surgeons said the same thing, they all gave me a different story.  I picked Cleveland because they are advanced in doing open heart surgery without cracking open the sternum, and no rib cracking...no giant incision UP the middle of your chest.  MY pericardiectomy was preformed UNDER my left and right breast...no worse than a breast augmentation surgery.  No healing of the ribs...much less tramatic, and no scar up the middle.  They also use wire to hold your ribs back together when you have it on the sternum, the wire is so thick, you can't go through a medal detector without setting it off.  I did not want too go though all that, and the reason I chose Cleveland Over Mayo.  WHile I was there, the president of Kawaii was there...he was having open heart surgery.  They are listed as Number ONE in the world for open heart surgery, and the best success rates.  THey do run a tight ship, and I was well taken care of except for one NURSE in ICU, but you can't blame the hospital for a piece of crap nurse.  IF you can put this surgery off; and live a normal life, then I would go for it.  IF you are so miserable that YOU can not lead a normal life...then have surgery.  I was too the point that between the pain, the swellling...the SUFFOCATION...felt like someone was strangling me all the time, and the LOW low energy levels...I was finally ready.  I am on my third week since surgery.  I have not swelled, I have lost 22 pds, my Jugular vein distention is down an inch, and I have not had atrial fib since I have returned home.  SO for those reliefs alone, yes it was worth it.  I have come to grips that I will never ski again....or do any high impact activity, but, it is still a bit depressing.  CAN IT RETURN???  YES...absolutely, and if any doctor tells you it cant, he is dead wrong.  I know a man who had a pericardiectomy, and within two years, calcificaiton returned to the area's it was removed.  Whether it happens in all cases......I don't know, and I don't think they do either.  I did appreciate the fact that Cleveland was honest about that.  When I asked him if it could come back, his answer was this..."NONE that I have ever done has returned, but not too say that it can't".

Good luck to you all, and I hope all the success in the world too you.  TERI!!  MY buddy...the boys are doing good..so thankful their MOM's life is not at risk anymore....I am healing slowly; I go to reach for something, and FEEL that PULLING....uggggg, but, I am healing well I believe.  I will be happy to have the echo, xray, mri and cat scan done in a few weeks, to COMPARE the befores too the after...that is the MILLION DOLLAR QUESTION....how much did he remove, and am I still constricted....maybe just mildly now, and thus the relief of symptoms...OHHH and to answer one more question for you guys...EVERYONE that I have spoke too that has had a complete pericardial stripping, DOES feel a more prominet heartbeat.....that has not happened too me...because they did not remove my entire pericardium...so I can't feel my heart beat for the first time in FOUR years, and it is wonderful.  I had atrial fib, and arrythmia's all the time, and its soo creepy, so too no longer feel my heartbeat, has BEEN wonderful!  Cathy

Hi John!  Some wonderful questions and info!

 

Cathy and Nan, thanks for stepping in and once again and answering things that you are able to!!

 

Hugs, Teri

xoxoxo

Hi John99,

I was fatigued and low energy 2Y ago when I was suggested the "wait and see" approach... with 5-7mm "bread and butter" (no calcification yet) and partial constriction at that time...

They told me, "normal" is under 3-4mm.. "mild" is under 10mm - but it all depends on the constriction. (I have elevated pressure in all heart chambers) As you know you may have thickening WITHOUT constriction or other symptoms.

Storri is absolutely correct. I was also told, if I can live a somewhat "normal" life... avoid the surgery... Pericardiectomy might not fix everything... hopefully it'll make it better... mild constriction can remain on the same level for decades..!!   Most people simply don't know that they have it...

Ufortunately my symptoms have gradually worsened.. the change is very gradual and now I'm ready to do it...

My strategy was to wait with the surgery as long as it is possible... I know there are schools out there who suggest doing it ASAP. 

John99,

One more thing... I'm amazed how little is known in the US about CP.. of course it is very rare here. I read that in developing countries like India, Pakistan or Indonesia where it is very common.. having CP - even today - is like having a "death sentence"... they do thousands of surgeries with relatively high mortality rate and generally have only inceremental improvements because it is mainly caused by TB.. Full recovery is rare there.. So I'm just grateful having our wonderful medical care here...

Specky-I would definitely ask what the down side is.  But I'd be willing to guess(not bet) that it was someone in severe shape to begin with.  I really hate the wait-and-see approach.  I haven't heard of anyone yet who has waited long enough to be able to turn away from the surgery.  But there is poor Cathy who because of the medical field's inadequacies was made to wait too long.  I have never been so scared in life as I have been over the pasty year and a half.  The scariest part is the realization that Drs really don't know much and almost never agree with each other unless they're agreeing that they don't know.

John99-I know a lot of these ?s weren't asked for me but I appreciate any answers so I'll assume you're the same.  First, I was curious if you could go over your time frame of symptoms.  If this is only a year, like I think I read, and you're at 3mm, it'll probably be a short wait-and-see in my opinion.  I can relate to you a lot.  I have been soooo sick and have Drs look at me and basicaly say-not sick enough for them to help.  they see wait-and-see as a help.  they don't want to open you up unless they're sure.  You have to realize they can't feel the seriousness of the symptoms.  Unfortunately, Drs won't rely on your words.  A year ago I struggled with breathing symptoms, intermittant chest pain/pressure and chronic nausea.    My right heart cath showed constriction but my MRI showed only 2mm thickened!!  They also said I had livedo reticularis and autonomic dysfunction which are both very nonspecific symptoms of almost anything.  Since then, I started getting the headpressure/headaches more and more until it became an every day experience, same goes for the swollen stomach,  phantom strangler, swollen stomach and joint pain(especially my hips).  I haven't heard others mention joint pain but it definitely made my Drs look toward autoimmune illness i.e. Lupus or MCTD.  I like to believe it's not any of these but just the CP.  I'm sure Andrea would understand that.  My ANA is bascially negative or borderline positive so it probably isn't an autoimmune disease.  The legs-ooohhh!!  Anyway, my point is I know the wait-and-see is so frustrating.  But if your hunches are right (and so far they've been dead on!!!!)  then the next year or so may bring some misery but a lot more answers too.  I know that's not so comforting but realize that you were RIGHT!  You kept saying CP and it sure seems like you knew more about what you were talking about than the Drs back home did.  Now you're in with the right people and you have results pointing in the right direction.  My only caution is this-I'M VERY CONCERNED about SOME OF THE INFO GIVEN TO YOU.  MUCH LIKE CATHY AND NAN SAID.  I'VE NEVER HEARD ANY WEBSITE, BOOK OR DR SAY IT'S NOT FATAL OR O% MORTALITY.  THOSE COMMENTS MAY MAKE ME RECONSIDER YOUR SOURCE.  A SURGEON?  TOO CONFIDENT?

Lastly my possible traveling-I'm afraid to spend too much $ on the diagnostic phase when I can only imagine what's in store.  Awful, that $ is holding me back but I have two small children(not in school yet), a brand new house, and a rather large car payment on a really nice van we just bought.  Boy, are my Priorities messed up!!!!!! But I can't give any of it back.......LOL....I'm going to make one last ditched attempt with Mass General-a very respectable hospital in Boston but so far my experience with them has been way off.  They went on some crazy goose chase of fatal illnesses telling my husband and I every theory, every step of the way.  Needless to say-he's a basket case whenever the words Dr, hospital, or breathing come up.  But he loves me!!!  That's what matters. 

Post Edited (havefaith) : 7/21/2005 7:25:06 AM (GMT-6)

Hi All,

I came home from Mayo last Sunday.  Ended up in the emergency room in Chicago with one of my chest tube sites flowing like a cannon.  Finally, they figured it out it was just some fluid that didn't drain and not anything any more serious.  I have been walking and getting around some this week.  My worst pain is in my back.  It is really hard to get comfortable.  I feel very fortunate with my stay at Mayo and what they did for me.  I still have the extra beats and irregular heart beats but am in sinus rhythm.  My surgeon came out and told my family, "it was really ugly in there".  The entire pericardium was covered but they removed 90 to 95% of it so I am pleased.  This site has been invaluable and I thank all that have gone before me as it helped me know what to expect.  I plan on taking baby steps and getting stronger everyday!!

Brenda

Brenda...congrats on making it home. Am glad the ER scare was not serious. Sounds like you were treated well at Mayo. How severe were your symptoms prior to surgery?

Mrozek...you were at 5-7mm 2 years ago but how progressed is it now? It sounds like Cleveland may be more conservative vs Mayo.

Nan...you were at 4mm on the CT and Mayo recommended the surgery because your constriction symptoms were more pronounced. My point is pericardium thickness apparently has no correlation with constriction pressure.

Have Faith...you were only at 2mm which is considered normal but yet your cardiac catherization indicated constriction. So all you need is a 2nd opinion to confirm the diagnosis. But are they going to put you thru another catherization since a CT scan may only show minimal thickness?

Cathy...I place more credibility on informed patients especially ones in touch with their own illnesses then physicians that can not actually feel the symptoms that we all have experienced. To them it is a job and may even be a passion. But to us it is our lives and you got to respect that we have to deal with it every day, a disease offers no vacations.

Specky...I hear all the Mayo surgeons are excellent. Yes acute pericarditis attacks are painful and debilitating, mine lasted about 8 weeks, except my local physicians did not recognize it. I know now what to expect if I get it again. I can certainly understand why you would opt for surgery. Since you failed treatment that is considered acute pericarditis with complications, which meets one of Mayo's criteria to offer you surgery even with normal tissue. In my case the acute attack resolved on its own finally but not without leaving me daily reminder symptoms that I consider early stage constriction symptoms but does not severe enough to meet Mayo's surgery criteria. My cardiologist said the surgery was easy too. But Cathy summed it up well, if you can deal with the symptoms then delay but if you can't handle the symptoms you have to go , but no such thing as an easy surgery.

Hi John99,

You asked "you were at 5-7mm 2 years ago but how progressed is it now? It sounds like Cleveland may be more conservative vs Mayo." No. I think they have a "profile" of a typical CP surgery candidate and I did not fit the bill... also, I was very conservative, I didn't want to jump into a surgery!

Well, I had and still have partial constriction probably about the same - as I understand, my Pericardium has thickened unevenly and partially restricted/touched the heartwall... my symptoms were relatively mild at the beginning.

Some with mild symptoms "adjust" and as the heart finds the most comfortable way to operate the symptoms may not get worse. One can live with relatively little discomfort... the issue is calcification as time goes on and/or still active infection. My understanding is that not all pericardiums get thicker in time but all start to calcify... I'll know mine at the end of Aug.

Hi Everyone,

Thanks for the info and positive words.  I have decided that I am going through with it on July 29th.  Obviously the doctors at Mayos believe that the best option for me is a pericardiectomy even though I do not have constriction or thickening, just frequent and very symptomatic recurrences the first 14 months of this disease and now chronic inflammation and all the other "bad" stuff that goes with it for the last five months.

John I would like to hear about how it all started with you.  I don't understand why they would say I'm a candidate and you're not - yet.

Teri, how long has it been since your surgery?  How do you feel?  Would you mind sharing your story again.

Thank you all.  I have learned so much just in the past few days due to your information.  It has helped tremendously.

All the best,

Specky

Brenda,

I am a bit confused...did you go home with your drains?  Mine were removed the first day in ICU, and either I misunderstood, but it sounded like you went home with your drains?  I found the major discomfort was gone once the tubes were gone, and was so happy too see them removed...after that it became so much easier.

Your all right, The Cleveland Heart Clinic is a bit more conservative, but I was extremely happy with that approach, as they did not strip my entire pericardium, but when I asked Lytle if he had ever seen the calcification return...his reply was, "not a patient of mine has ever had it return or continue to grow, not too say it can't, but in my experience it has not, although he has DONE REDO's..patients that had pericardiectomies at other hospitals, and he said there were some really botched jobs, so, in order too not go though this nightmare twice, I believe that Cleveland and Mayo are the only way too go!!!  MROZEK...I know you will be pleased with Lytle, and he will take great care of you, he is an extremely dedicated surgeon, and really understands this disease and has taken a great interest in it.  I believe Cleveland is a lot more personalized than when I went to Mayo, it was almost like an assemby line there...altho, I understand that, the hosptial is a lot larger, and treats so many different things.  I liked the more personal approach at Cleveland, not too say MAYo was not personal...I met with Dr. Gordon Danielson there, and he was very very professional, didnt' seem to have a personality, a bit on the cold side.  During the surgery, they took my family too a class and told them what too expect, then soon as the surgery was over, they paged my family and sent them to Dr. Lytle's office were he proceeded to tell them every detail about the surgery.  HE did express his concern when I ran into trouble on the operating table, and was very blunt in saying that my heart took a turn for the worse, and was starting to fail; and went into such a rythum they were afraid they would lose me.  BUT, PLEASE keep in mind...BOTH MAYO and CEDAR SINAI and CLEVELAND all said, they had never seen a case this bad.  NOt only was my entire heart COVERED in calcification, but at its thickest point was 12mm's...and a normal pericardium is around the heart, then fluid, then the myocardium (the acutal heart muscle)...mine was messed up, because there was no longer any fluid, and the calcified pericardium was actual STUCK and ADHERED to the actual heart muscle (myocardium) and all will tell you , that is the worst case scenerio.  I know that Lytle cut windows in my heart, rather than opting to remove my entire pericardium, but, I believe he felt it the safest route with me, being that my right ventricle was caving in from the pressure of so much calcification.  ALSO..........I DID DO A LIVING WILL; and a WILL........I think that is so important MROZEK..you can do a living WILL online for $15.00....I did that online.  During surgery you are at risk of stroke, and GOD FORBID that anyone should end up on life support, you can have your wishes carried out if the worst should happen.

THIS surgery is NOT easy by any means...as I said...all three hospitals told me that this surgery is so far more dangerous than BYPASS...or any other heart surgery.  BE sure to have your affairs in order.  I did journals to my son's, and made sure that all was taken care of before I went in.  JOHN99, I believe most constriction is  localized if caught early, but it is impossible for them to know which part of the calcification is acutally constricting the heart, but regardless, taking any calcification off will release the heart.  I have too tell you all, I was so swollen before surgery with ascites and bascially fluid all over my body, that 25pds has JUST FALLEN off since I have come home.  THey tell me that was all fluid.  I don't know if any of you have experienced a weight gain the last year or two.  I was the same weight for 18 years, until two years ago.

SPECKY...ask if MAYO does the open heart under the left and right breast?  I have found that without the wires and the cracking of the ribs, I think it is a lot less tramatic, plus not having the scar up the middle of the chest is nice, especially for girls, I know MEN look at it has a BADGE of courage...and it is!

MROZEK...is your calcification stuck to the myocardium, or has it not progressed that far.  What is your surgery date at Cleveland, and have you spoke to LYTLE?  Ya know, if you call him with any questions, he will return your call right away...I loved that about him!  AND you are 100% the surgery is a LOT less complicated if it is NOT stuck to the myocardium, it is a BLOODY BUTCHER JOB, and lucky me was like that...when they viewed your MRI, was your stuck, or still seperate from the acutal heart muscle?

I WANT JOHN99, SPECKY, and MROZEK to know, that I know exactly how you ALL feel, being that I am only THREE WEEKS OUT OF SURGERY......I was scared too death out of my wits, and I want you all too know that I am sooo happy I am on the other side.  NAN told me how great it was, to NOT have this hanging over my head.  Please keep in mind that my case was drastic, and severe...that is awesome you are all getting it done before it causes damage to the heart that is irreverable.  My heart will always be enlarged now..my valves will always leak, and we still do not know what damage to the liver yet.  BUT, I was the case that was not diagnosed until I was severe..for you all to get in before hand..it will be a much easier surgery.  MROZEK.........are you having LYTLE go under the breasts...or down the sternum????  HAve you spoke to him about it??  One last thing...in the last four years after I was diagnosed...they found that my calcifcation grew from 1 to 2mm's a year.  Not too say everyone would progress as I did.  BUT remember..MY FEVER was when I was 19 years old...so did it take 20 years to get too the 12mm's?? if so, i advise no one to have surgery unless you are severly symptomatic, because you can die in this surgery.  Sorry to be blunt as well, but any doctor that tells you different is full of baloney!   HAVE any of you heard of nanobacteria?  A lot of doctors are now saying this could be the cause..the only trouble with that is IF IT IS...and they unearth it....it does come back faster...Cathy

(((havefaith))), I'm sorry to hear that you are feeling badly!!

I think it was Cathy that posted the hospital link you are referring to?...Cathy??

Sometimes, the first steps in any disease is to start locally and move on from there - ask them as many questions as you can!!  Keep us posted and try not to overdo this weekend.

Hugs, Teri

xoxoxo

havefaith, this is very concerning to me - It's never normal to cough up blood!!

http://www.nlm.nih.gov/medlineplus/ency/article/003073.htm

It may be as you've said a broken vessel due to coughing, but I would definitely get this checked out!

 

Big Hugs, Teri

xoxoxo