No cause found for persistent pleural effusions

Posted by cindyconstien @cindyconstien, Dec 24, 2018

I have been treated for 2 years for pleural effusions. All fluid and blood work comes back clean – no cancer, infection, virus – nothing. They had been tapping both lungs and getting 1.5 to 2 liters from each side. The heart has been checked out (EKGs, Echos, stress tests) and there are no issues.
In April I had a bi lateral pleurodesis performed with biopsies from my left lung (no issues). They used talc and 7 months later I just had 1.8 liters drawn from the right lung. They believe the left side was moderately successful but the right side failed. I'm about to schedule a redo on the right, perhaps using the chemical option. I am also looking at possible "constrictive pericarditis" and will get another echo today, possibly leading to a heart cath to look closer.
I am a non smoker, relatively fit. I ran marathons and triathlons, ate appropriately, non diabetic. Only medication is for cholesterol management and inhalers to try to relieve my breathing discomfort.
I'd like to treat the cause – not the symptoms.

Any ideas?
Rob C.

@@cindyconstien and Rob C. It's beyond frustrating when we have symptoms that make us ill and no known cause has yet to raise its head.
I found this: https://www.webmd.com/lung/pleural-effusion-symptoms-causes-treatments#1
What do your doctors say about a cause for you?

REPLY

Been through all the "normal" causes. Heart, cancer, thyroid, auto immune/Lupus, etc. Lungs are healthy – no damage at all. They are now saying that we may never know the cause – – beyond frustrating.

REPLY

@cindyconstien – I imagine that you were tested for all sorts of infections too. It's tough to have to deal with this sort of thing but there are treatments and the talc sounds promising. When will you have it done?

REPLY

X-ray this morning shows re accumulation of fluid. Have asked for a thoracentesis ASAP. See surgeon 1-3. But what if the pleural cavity provides a reservoir for fluid that is then dammed off. Where does the fluid go next? Still no cause or identification where the fluid comes from. If the pleurodesis works, what is life like afterwards?

REPLY

Cindy. I'm afraid that this over my head. I need to recruit others to help and try to answer your questions. I am guessing that your pleural cavity will continue to fill as long as this persists.
The fluid has to be drained if it's dammed off. Some of it will be reabsorbed by the body, but not enough to solve the distress it will cause.
I hope that you continue to ask your doctor these questions and also research them.
I am also hoping that others with pleural infusion chime in.
Please keep me posted.

REPLY

Hello @cindyconstien,

In a pleural fluid analysis or thoracentesis, your doctor will remove fluid from the pleural membrane area by inserting a needle into the chest cavity and suctioning the fluid into a syringe. The fluid will then be tested to determine the cause.
Pleurodesis, is a treatment that creates mild inflammation between the lung and chest cavity pleura. After drawing the excess fluid out of the chest cavity, a a talc mixture is injected into the area which causes the two layers of the pleura to stick together, which prevents the future buildup of fluid between them. https://www.mayoclinic.org/diseases-conditions/pleurisy/diagnosis-treatment/drc-20351866

You might also be interested in this conversation where @blueot and @lisakuehl have written about pleural effusion: https://connect.mayoclinic.org/discussion/pleurisy/

REPLY
@kanaazpereira

Hello @cindyconstien,

In a pleural fluid analysis or thoracentesis, your doctor will remove fluid from the pleural membrane area by inserting a needle into the chest cavity and suctioning the fluid into a syringe. The fluid will then be tested to determine the cause.
Pleurodesis, is a treatment that creates mild inflammation between the lung and chest cavity pleura. After drawing the excess fluid out of the chest cavity, a a talc mixture is injected into the area which causes the two layers of the pleura to stick together, which prevents the future buildup of fluid between them. https://www.mayoclinic.org/diseases-conditions/pleurisy/diagnosis-treatment/drc-20351866

You might also be interested in this conversation where @blueot and @lisakuehl have written about pleural effusion: https://connect.mayoclinic.org/discussion/pleurisy/

Jump to this post

Am coordinating my 8th thoracentesis now. Had bi lateral pleurodesis in April. No cause found, no relief on right side from pleurodesis. Has anyone heard of a C PAP connection? I was diagnosed with sleep apnea in 2013, in fall of 2014 a chest x-ray showed a pleural effusion for the first time and has steadily worsened. I recall no other change in life style.

REPLY

I had open heart surgery in November and seemed to be doing ok after until the end of January when I got pneumonia and things just went downhill from there….the beginning of April I was having chest pains but the doctors could not find anything wrong, then the beginning of May the chest pains came back, but this time much worse, shortness of breath and running low grade temperatures, and echo showed fluid around my heart, the doctor had started me on steroids before they found this and when they went to drain the fluid was very minimal. The pressure on my chest continued and they found fluid around my lung – they drained the fluid 550 cc and by the following week the fluid built up again and they drained another 330 cc. the doctors have run countless blood test with the inflamation markers high along with the white blood count high, they started me on three month dosage of steroids, however I have been on them for a week now and believe the fluid is back again and no relief from the pressure and palpatations I am having with my heart. They have run CT scans on my head, chest abdomin, had upper GI showing inflamation in my stomach, but they can't find out the root cause…I am desperately seeking answers since I can't work and have been in the hospital 13 days in May alone….anyone help???

REPLY

Hi @bethkemper, you may have noticed I moved your post to this existing discussion on pleural effusions so that you can read what was said by others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

That must be so scary to have this continue to happen.

I wanted to tag fellow Connect user @cindyconstien in hopes she will come back to join in the conversation again.

Back to you @bethkemper how long did the doctor's tell you it would take for the steroids to start working?

REPLY

they said they should start working in no more then a week

REPLY

Good luck Beth. I had another pleurodesis in January on the right side. Last xray says it held but I still can't breath well. Can't carry anything or go up stairs without having to sit and rest. I've put on 30 pounds since January. My feet legs and abdomen have swollen and the feet hurt to even walk on. I can't get insurance to approve a PET scan or cardiac MRI, though I'm told those are about the only 2 tests they haven't run on me. Early May I went to the "Functional Medicine" unit at the Cleveland Clinic. A new Dr for fresh eyes. They drew 18 vials of blood and tested all kinds of new stuff, all inconclusive. A Dr friend looked at the results and suggested I get a referral to a pulmonary lymphoma specialist, but Cleve clinic Dr. says not enough variance in results to justify the referral. Very depressed. If Mayo Clinic had a Dr. that would like to take me on as a guinea pig I'd travel to see them, need someone that is willing to experiment on me. Rob C

MAYO – HELP!!

REPLY
Please login or register to post a reply.