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Has anyone experienced recurrent pleural effusion with no clear cause
I’m a 47-year-old female and have been experiencing repeated pleural effusions on my left lung for over a year. The fluid has been tested numerous times and all results have come back negative. I’ve seen multiple specialists; thoracic surgeons, pulmonologists, and pulmonology interventionists but we still don’t have answers.
Before my recent procedure, I underwent seven thoracenteses to drain the fluid. Two months ago, I had a pleurodesis with pleuroscopy and a PleurX catheter placed. The procedure helped only about 70%, and I’m now left with three pockets of fluid. The biopsy showed only inflammation but no malignancy. My doctors have said there’s nothing more they can do, yet I still have no diagnosis. For now we just monitor the fluid.
I’d love to connect with anyone who’s experienced something similar.
I really appreciate it
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@rtbullard
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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.
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2 ReactionsCan 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.
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1 Reaction@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....
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1 Reaction@trki I've had both
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2 ReactionsI 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...
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@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?