Splenic Cyst

Yes I had my surgery I am doing okay have had some complications since being home like with being able to breathe and muscle spasms in my stomach all day long which makes my insides feel like they are being ripped out of me. Surgery took longer then they thought and what was in my spleen was not what they thought it was so we went in thinking that it was a 11cm hard mass but when she went in it turned out to be a 11cm abscessed cyst that was full of infection so I came out with a drian tube that has to stay in till its all clear and lots of antibiotics. Was sent home told by the surgeon filling in for my surgeon that I have cancer but he couldn't tell me what kind if they got it all are anything else that I had to wait on my appointment with my surgeon. So now that's what I am waiting on is to find out all of that information which I see her tomorrow afternoon

I'm sorry to hear that the surgery was longer than anticipated, @renesbaby19. It sounds like you are in a lot of discomfort as well. Do you have meds to manage the pain?

So tomorrow you are expected to get the biopsy results and find out a bit more about the type of cancer. Is that correct?

I would like to hear from you again after your appointment. Will you post an update?

Yes I will

Ohh and yes I meds for the pain but they are just not strong enough but they tell me that nothing they can do to make me comfortable except put me back in hospital and put a iv in to give me stronger meds

Good morning @renesbaby19. I was surprised to see it’s been 4 months since I’ve talked with you! Time flies…
When we spoke last, you’d recently had your surgery to remove the splenic cyst and coping the best you could during recovery. I know it was an extensive surgery and that takes its toll on the body, especially with the complications of the infection, the drain tube and antibiotics. Our bodies are amazing with what they can go through and tolerate! I hope you’re doing well now and making a full recovery.

There was also a mention that your surgeon discover some cancerous area. Have you learned anymore about that? Are you going through any treatments?

Mom of young adult son who had a 17x17x13 cm cyst on the spleen. It was drained for 6 weeks. He went in to get the drain removed. They decided to do sclerotherapy with betadine. He was pumped with betadine and told to roll around to cover the inside of the cyst. Then they let it sit there for over an hour. The IR Dr then pulled the betadine back out of the cyst and removed the drain. What no one realized the cyst was still bleeding and bled into the abdomen. The blood then clogged the kidney vessel. He has been in renal failure for 3 weeks now. They are doing dialysis 3 days a week. The surgeon is now suggesting he wait 3-6 months before having a splenectomy done. I can't figure out why waiting is a good idea?

Oh gosh, @momofjohn, I can imagine you are worried sick about your son. I'm not qualified to even guess why they have to wait before doing the splenectomy. Maybe they have to wait until he is stronger. Only your son's surgeon can explain why this is best in your son's specific case.

Are you or your son able to contact the surgeon to ask this very important follow-up question? Do you have an online patient portal where you/he could submit the question to his team?

I have asked the surgeon. I was told something about scar tissue and the blood in the abdomen has hardened and it would be dangerous to try to remove it. None of that makes any sense to me.

@momofjohn, I once received advice from a fellow patient who gave me the tip to "keep asking questions until YOU understand the answer." Sometimes we ask our questions and are given an answer, but we walk away feeling more confused or underinformed.

I find it helps if I repeat back to the doctor what I've understood in my own words. This has several benefits:
1. I have better recall if I repeat something and deeper understanding if I use plain language (my words).
2. The doctor can see where I have gaps in my understanding and can fill in the pieces they were not clear about or that I missed.
3. It avoids having to repeat questions with similar unsatisfactory results.

I simply say, "Let me see if I understand you correctly..."

Can you make an appointment to discuss with the surgeon? Or perhaps there is a nurse specialist who works with the surgeon and can answer questions for you?

Hi Everyone.
I went to my PCP in May 2021 because I had 2 lumps on my upper left abdomen, and would get excruciating pain there. Felt like someone kicked me there with steel toed cowboy boots and burned me with a hot poker at the same time.
He sent me for an abdominal CT scan and other unrelated tests and told me to come back in 3 months. A week later, I called his office and talked to his nurse. I told her "This pain is awful. Can you find out what my CT scan showed?" So, she asked my PCP and he said the CT scan was normal. I said "Well what should I do? I can hardly walk?" She said to go to University of TN Emergency. Great! I had no way to get there as I live 1.5 hours away. I decided to just stay in bed. After a few days the pain subsided and I chalked it up to something I ate. I had the same pain on and off the last year and a half but kept chalking it up to something I ate.
Fast forward to July 2022. I am having terrible shortness of breath. I go to PCP and he orders a CT Scan for PE. I go back for results. He says lungs and heart are fine. Lungs are clear. Says I have a slight decrease in kidney function. Refers me to Pulmonary Specialist and Urologist. The lung Dr he referred me to is the same one I went to 4 years ago when I was trying to find out why, after a very severe bout with the flu/bronchitis, I could no longer get out of bed. I had a zillion symptoms and went to 2 cardiologists, ENT, Gastroenterologist, Pulmonary Specialist, and even a Psychiatrist, (because my PCP didn't think I was suffering from anything but being crazy I guess). Every test came back normal. I was eventually diagnosed with ME/CFS. Back to my spleen.
The lung Dr informed me that 4 years ago they found a 3-4 mm spot on my lung. I was flabbergasted!! He said we need to do another CT Scan of my lungs. Long story short...I had to go to the records dept. of the hospital my PCP had CT scan done 2 mos. earlier and get CD of scan and diagnostic report for lung Dr. My PCP forgot to send them with referral.
When I read the diagnostic report, I was shocked at what it said. Not only had part of my lower right lung lobe collapsed, but I had a 3 cm cyst on my spleen!!
He said everything was normal. 4 years ago the lung Dr. said everything was normal.
Now, years later, I find out I had a spot in my right lower lobe, a cyst on my spleen and a partially collapsed lung and neither Dr. mentioned it to me!!
So, while I wait for my Oct.4th appt at lung Dr, crying and convinced it's Stage 4 cancer by now, I decided to look up the spleen on my cyst, (I mean cyst on my spleen), and see what thats all about.
Boy...am I confused!! And it sounds like most Drs are confused as well after reading your stories.
I am shocked at the state of our healthcare systems and the lack of knowledge about spleen cysts. The communication issues between Drs, radiologists and patients as well.
How are we supposed to trust our Drs if they are clueless, or in my case, hide the truth from me?
So, in 5/2021 my spleen cyst was 3 cm. Any suggestions on the best way to handle this? I am guessing another abdominal CT scan is in order and than ask my PCP to refer me to whom??? A hematologist?? Gastroenterologist?? Oncologist??
Any suggestions or direction would be greatly appreciated. Thanks!!