Liver cyst refilling: What questions should I ask?

Posted by tessa152 @tessa152, Jul 1, 2021

My liver cyst was aspirated early this year it was the size of a large cantaloupe. It’s now refilling. What questions do I have to ask to select the best procedure and physician?

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@tessa152 what a good topic to bring to the Mayo Clinic Connect community. Allow me to bring @elevinton @foxfire @azkidney57 and @hopeful33250 into this discussion as they have had experience with liver cysts. I'd also like to invite thoughts from @rosemarya and @jolinda as they are familiar with liver disease.

I'll kick off with my thoughts of questions to ask:
1. Why is the cyst refilling and what can I do to help prevent it?
2. When is the right time to consider surgery?

Tessa, do you know what the underlying cause of the liver cyst is?

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It’s my understanding that I may have had the cyst since birth. Since my Surgery it’s already filled 50% and I’m already having symptoms reoccurring such as mild nausea and lack of appetite. I imagine surgery will need to be done with the next couple months. Need to know best method so it doesn’t reoccur and recovery time.

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@tessa152

It’s my understanding that I may have had the cyst since birth. Since my Surgery it’s already filled 50% and I’m already having symptoms reoccurring such as mild nausea and lack of appetite. I imagine surgery will need to be done with the next couple months. Need to know best method so it doesn’t reoccur and recovery time.

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@tessa152
You have not mentioned any pain or symptoms, however I want to share this short article from Mayo Clinic's Health Information Section because it does give a summary of simple liver cysts, causes, detection, and says that they may be the result of a malformation present at birth. -as you have indicated.
There is also a statement that rarely liver cysts may indicate a serious underlying condition. Please take a look at this article.
Perhaps you will want to ask the doctor whether your cyst is indicative of an underlying condition.
Liver cysts: A cause of abdominal pain? > Can liver cysts cause abdominal pain? https://www.mayoclinic.org/diseases-conditions/liver-problems/expert-answers/liver-cysts/faq-20058440

Might I ask how old you are? How long ago did you have the cyst drained?

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Thank for the link.
I was experiencing extreme abdominal pain and nausea prior to the cyst aspiration. My surgery was nearly 4 months ago. I’m in my early 60’s. Recently the discomfort has started to return.

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@colleenyoung

@tessa152 what a good topic to bring to the Mayo Clinic Connect community. Allow me to bring @elevinton @foxfire @azkidney57 and @hopeful33250 into this discussion as they have had experience with liver cysts. I'd also like to invite thoughts from @rosemarya and @jolinda as they are familiar with liver disease.

I'll kick off with my thoughts of questions to ask:
1. Why is the cyst refilling and what can I do to help prevent it?
2. When is the right time to consider surgery?

Tessa, do you know what the underlying cause of the liver cyst is?

Jump to this post

Hello @tessa152

While I've had liver lesions as well as pancreatic cysts, I have never had liver cysts so I'm not able to give you much information about this problem.

Are you seeing a GI doctor who specializes in liver problems? How are your blood labs for liver functioning?

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I have spoken to multiple doctors as of January including a GI specialist. All blood tests show a normal functioning liver. unfortunately the progression of events occurred quickly once the finally diagnosis in March that I did not ask for photos or copies of my blood tests nor ultrasound nor surgery documents.

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@tessa152 have you gone to Mayo for this? I ask because I have polycystic kidney and liver disease, which is different than what you have. But, there is a procedure that Mayo liver specialists do for larger cysts called sclerotherapy. With that the cyst is drained and then filled with foam that causes it to stick to itself. This makes it difficult to fill back up. I had it done on three cysts in my liver and they haven't filled back up. That was a few years ago. You are awake during the procedure and it's pretty easy. Slightly sore afterwards but I was able to leave, go eat and even walk around the Mall of America for a while (we had traveled to Mayo from out of state). I feel like Mayo is the only place in the U.S. that is doing this, but could be wrong. Might be something to look into. Good luck!

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@rosemarya

@tessa152
You have not mentioned any pain or symptoms, however I want to share this short article from Mayo Clinic's Health Information Section because it does give a summary of simple liver cysts, causes, detection, and says that they may be the result of a malformation present at birth. -as you have indicated.
There is also a statement that rarely liver cysts may indicate a serious underlying condition. Please take a look at this article.
Perhaps you will want to ask the doctor whether your cyst is indicative of an underlying condition.
Liver cysts: A cause of abdominal pain? > Can liver cysts cause abdominal pain? https://www.mayoclinic.org/diseases-conditions/liver-problems/expert-answers/liver-cysts/faq-20058440

Might I ask how old you are? How long ago did you have the cyst drained?

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The symptoms this spring are a little different than prior to my aspiration. Just this past week I was awaken in the middle of the night with blood pressure reading of 189/ 94. Then I am unable to fall back asleep. This happen two days this week. During my ultrasound the were have difficulty locating the vein to my heart. I am unable to eat normal size meals or full glasses of water without feeling full or nauseated. Exercising this morning was difficult after the my late night blood pressure spike. My discomfort and ability to bend at my side is slightly restrictive. This symptoms started back up just in the last two weeks.

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@rosemarya

@tessa152
You have not mentioned any pain or symptoms, however I want to share this short article from Mayo Clinic's Health Information Section because it does give a summary of simple liver cysts, causes, detection, and says that they may be the result of a malformation present at birth. -as you have indicated.
There is also a statement that rarely liver cysts may indicate a serious underlying condition. Please take a look at this article.
Perhaps you will want to ask the doctor whether your cyst is indicative of an underlying condition.
Liver cysts: A cause of abdominal pain? > Can liver cysts cause abdominal pain? https://www.mayoclinic.org/diseases-conditions/liver-problems/expert-answers/liver-cysts/faq-20058440

Might I ask how old you are? How long ago did you have the cyst drained?

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I was diagnosed with anemia and b12 deficiency, and another occasion told my iron supplements were not working to increase my red blood cells.

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@amywood20

@tessa152 have you gone to Mayo for this? I ask because I have polycystic kidney and liver disease, which is different than what you have. But, there is a procedure that Mayo liver specialists do for larger cysts called sclerotherapy. With that the cyst is drained and then filled with foam that causes it to stick to itself. This makes it difficult to fill back up. I had it done on three cysts in my liver and they haven't filled back up. That was a few years ago. You are awake during the procedure and it's pretty easy. Slightly sore afterwards but I was able to leave, go eat and even walk around the Mall of America for a while (we had traveled to Mayo from out of state). I feel like Mayo is the only place in the U.S. that is doing this, but could be wrong. Might be something to look into. Good luck!

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This treatment sounds very promising. I was recommended to have a roofing technique used on my cyst. Surgery possible in a couple months because of scheduling. I need to advocate for myself and need to determine what surgery would be best and if that blood pressure spike should elevated my call to immediate action ??

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@tessa152

This treatment sounds very promising. I was recommended to have a roofing technique used on my cyst. Surgery possible in a couple months because of scheduling. I need to advocate for myself and need to determine what surgery would be best and if that blood pressure spike should elevated my call to immediate action ??

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@tessa152 yes, ALWAYS advocate for yourself. It's OK to get multiple opinions, something many are uncomfortable with. I do so much research whenever I have an issue. My liver doctor here isn't very helpful and doesn't really know much about the disease I have. My kidney doctor is a bit better. I had no idea Mayo had solutions that I couldn't get here. Granted, there is no cure but they can do things to help with comfort and quality of life. I really hope you get the outcome you are hoping for!

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@amywood20

@tessa152 have you gone to Mayo for this? I ask because I have polycystic kidney and liver disease, which is different than what you have. But, there is a procedure that Mayo liver specialists do for larger cysts called sclerotherapy. With that the cyst is drained and then filled with foam that causes it to stick to itself. This makes it difficult to fill back up. I had it done on three cysts in my liver and they haven't filled back up. That was a few years ago. You are awake during the procedure and it's pretty easy. Slightly sore afterwards but I was able to leave, go eat and even walk around the Mall of America for a while (we had traveled to Mayo from out of state). I feel like Mayo is the only place in the U.S. that is doing this, but could be wrong. Might be something to look into. Good luck!

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@amywood20, Is your polycystic kidney and liver disease under control after this sclerotherapy procedure? I have only met member with polycystic kidney or liver diseases in the transplant discussion group. Do you need any follow-up care or treatment?

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