Has anyone experienced recurrent pleural effusion with no clear cause

@rtbullard
2nd reply
So you’re also dealing with a pleural effusion and still don’t know the cause? It’s still a mystery where it’s coming from? Which lung is affected, and how long have you been dealing with it? Is my case similar to yours? For me, it’s been really frustrating it’s been a year now. I’ve had surgery, and I still have pockets of fluid. I’m doing well physically, but mentally it’s been really tough. The anxiety is through the roof. I just want to understand why this keeps happening.

Can I ask how they monitor your effusions? X-ray, Ultrasound?

My husband had open heart surgery in August … he has had 11 Thoracentesis procedures since then , for bilateral effusions…
His team seems to rely on X-rays to evaluate the effusions … but they have been less than helpful .. “ trace of effusions “ on the X-ray , can turn out to be 900 ml of fluid .
CT scan and ultrasound have been the most accurate scans..I can understand not wanting him to have too many CTs but ultrasounds should be benign and cheaper

@trki My pleural effusion
is being monitored by a CT scan and ultrasound at the doctor’s office, and if anything further needs to be done, it’s always a CT scan. It used to be X-rays, but not anymore they just go by the CT scans. The surgery wasn’t 100% successful, so I’m left with a pocket of fluid, but it’s not expected to get bigger since my lungs are sealed. By the pleurodisis
Before the surgery, I had nine thoracentisis, almost every month.
each removing 1.5–2 liters of fluid. I’ve been dealing with this for a year, and while it’s frustrating not knowing why it started, thankfully I don’t have any symptoms, and they’re just monitoring it.

@pleuralmystery Thanks for your feed back… It makes sense that they don’t use X-ray to evaluate.. it doesn’t seem very accurate in my husband’s case .
It is troubling that they don’t know why you are having the pleural effusions for sure!

Yes me.....
My plural effusion is filling back up right now after 2 thorentesis
And last monday I had a surgical procedure with camera... drained 1.5L of fluid...
Took 4 biopsies.... put in a drain tube... 2days in hospital they pulled drain tube sent me home. Ended up in the ER yesterday had a CT scan showed fluid building back up...
I get biopsy results this coming Tuesday...
I was also looking for someone going thru the same....

@trki I've had both

I am going thru the same thing...
I tried to reply to you but it posted below... I'm trying to figure out this plate form....
I get my biopsy report this Tuesday... glad to hear yours are negative. Hoping mine are the same.
My plural effusion is filling back up for the 4th time since sept. 3rd... I've seen 6 different Dr.s no one knows why it keeps filling up...
.

@bz1776

Oh my goodness welcome. It’s rare to find people going through the same issue, but now I’ve found three, so it seems like this is becoming more common.

Did you just have a biopsy, or what kind of surgical procedure did you have? Was it a pleuroscopy or VATS? If you had VATS, you likely would have been in the hospital for about five days.

What brought you to the ER? Has this been going on for a couple of months now?

As you read my story, I had nine thoracenteses before I had surgery. I’m just trying to understand what type of surgery you had. It doesn’t seem like you had pleurodesis or a VATS procedure to seal the lung.

I’m assuming you may have only had a biopsy to determine the cause. When you had the thoracenteses, was the fluid tested, and did everything come back inconclusive?

Hi. I have a very similar story to yours. I got my first pleural effusion in Feb last year. They drained it and sent me home. And then it came back and they drained it again. And then finally they did the pleurodesis which didn't really work and so now I have loculated pleural effusion that I can't get rid of. None of the doctors could figure out what keeps causing the pleural effusions.
Now my pleural space is filling up again and I'm honestly scared not knowing what the next step is. They still can't figure out what's going on. All my tests come back good except for the X-ray/CT. Though this year they did see some hazy opacities in my lungs and mild cardiomegaly. I'm hopefully.that it will help them figure it out.

Hello, I had recurring pleural effusions about a year and a half ago. Like you, I had my pleural fluid tested multiple times and at first pathology showed possible malignancy, but then subsequent pathology said no malignancy (and they said the initial pathology was incorrect). I also had auto immune workup, my heart checked, pleural biopsies, everything, and it was all negative (except for Hashimoto’s which I already knew I had, they said it was not the cause). I had a mechanical pleurodesis with VATS , which resolved the fluid buildup ( was in ICU for 8 days). I had breast cancer 14 1/2 years ago with radiation for 6 1/2 weeks. Since the doctors couldn’t find anything else, they said this could be the cause (damage to the thoracic duct) so I was tested for chylothorax but my levels were only 50, which is on the bottom range of ‘possibly chylothorax’ (it has to be over about 100 to definitely be chylorax). But also, chylothorax is usually has a milky consistency pleural fluid, mine was not milky. I think they just chalked it up to that because they couldn’t find any other cause. I’m sorry that you are going through this.