Connect
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
Like
Helpful
HugInterested in more discussions like this? Go to the Lung Health Support Group.
Connect
@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.
-
Like -
Helpful -
Hug
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!