Splenic Cyst

Posted by stew201 @stew201, Jul 15, 2011

After having a CT scan with contrast for a post op mass, an unrelated 11cm cyst was found incidentally on my spleen. This finding has perplexed my primary physician and the hematologist that I was going to be referred to (I have an HMO). I am awaiting bloodwork to determine if the cyst is parasitic, but beyond that, I’m just told to take a wait and see approach if it’s not parasitic. Does anyone have any experience with a splenic cyst? Isn’t a mass that large on such a small organ dangerous?

Liked by grandmaR, eliana5

@2011panc

@maria1969 A cyst is basically a sac of fluid. Sometimes they need to be drained or removed if they are causing problems, Usually they are not harmful except for size or the possibility of tearing. Work with your medical care team and get specifics about your cyst from them. It sounds like they are still determining the exact nature of your cyst and how to deal with it in the best way.

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Thank you for the reply, I am so sore and it’s like a burning pain it’s been like that on and off for several years but only found the cysts today, I’m so scared and worrying my self sick but I have to wait for another scan to find out more.

Liked by eliana5

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@kimboski
Hi Kim,
Although I don't have the same cyst as you, I do have another kind of cyst.
My cyst is called a syrinx cyst.
It is located in the spinal canal between to bottom portion of the brain and upper portion of the spine.
Without going into too much detail, I have lots of spinal issues and my neurosurgeon was looking for a cause as to why I am having certain symptoms.
Like you, it was found when I had an MRI with contrast.
I was told that the cyst is VERY SMALL and should be left alone and to take the wait and see attitude, like your doctor.
I've done lots and lots of research to confirm this plan.
It is an acceptable move.

If I were you, I'd also do some research.
If the research says wait and see, I'd wait.
If the research suggestions are mixed, I'd go for a 2nd opinion.
If the research has a definitive get surgery, I'd go to a 2nd doctor.

Good luck!
Ronnie (GRANDMAr)

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@kellynormand

Thanks for your response @hopeful33250 – I have an appointment with my PCP next Friday (the 17th) and wanted to start there to get as much detail as I could from her. All I know so far is from the brief phone call from her the day after the MRI and, at first, I was so relieved that they had an answer to this pain after so long, I didn't think to ask any other question. It's only been in this past week that I started reading about it and thinking that I need to know more. So I want to go in and ask some in depth questions – what type of cyst is it, do they even know what type, how big is it, what are the chances of a rupture, what are the chances of it being more than just a cyst, etc. I want to see how many answers I can get from her and then see if she's willing to give me a referral to someone else. My insurance insists on a referral for everything! Any other thoughts on other questions I should be asking?

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Hi @kellynormand

I was just thinking about you as I re-read your post. I hope that you appointment with your PCP on the 17th was helpful. If you are comfortable doing so, would you care to provide any updates regarding what you learned from that appointment?

Liked by eliana5

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I am new on here and having difficulty navigating this site. I have no idea how to post a message, so I will reply to this one. I just found out I have a 1.6cm cyst on my spleen. They said it us growing. Had cat scan..they didn't "know exactly where cyst was" then they did an ultrasound..as I am having pain – sharp at times under left ribcage. They don't seem very concerned. They called me today with results. Cyst is inside spleen? Growing. They don't seem to concerned at Hematologist office. Frustrating.

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@eliana5

I am new on here and having difficulty navigating this site. I have no idea how to post a message, so I will reply to this one. I just found out I have a 1.6cm cyst on my spleen. They said it us growing. Had cat scan..they didn't "know exactly where cyst was" then they did an ultrasound..as I am having pain – sharp at times under left ribcage. They don't seem very concerned. They called me today with results. Cyst is inside spleen? Growing. They don't seem to concerned at Hematologist office. Frustrating.

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Thanks for your post, @eliana5.

I am sorry to hear of your pain and the cyst in your spleen that appears to be growing. Please remember that it is always your right to get a second opinion, especially if you are experiencing pain that is limiting your activities. A second opinion by a doctor who specializes in this type of problem may be a good idea. If you live near a multi-disciplinary medical center, like Mayo, or a university medical school that might be a good place to start.

Have you considered a second opinion?

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@eliana5

I am new on here and having difficulty navigating this site. I have no idea how to post a message, so I will reply to this one. I just found out I have a 1.6cm cyst on my spleen. They said it us growing. Had cat scan..they didn't "know exactly where cyst was" then they did an ultrasound..as I am having pain – sharp at times under left ribcage. They don't seem very concerned. They called me today with results. Cyst is inside spleen? Growing. They don't seem to concerned at Hematologist office. Frustrating.

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@ellana5 It can be very frustrating dealing with Dr's I agree. Just like @hopeful33250 said I would go for another opinion. You need to obtain copies of all your medical records and tests. Take them to another hematologist. How was your blood work?
Getting more than one opinion is really important in order to get a proper diagnosis.
I wish you best…
Jackie

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@eliana5

I am new on here and having difficulty navigating this site. I have no idea how to post a message, so I will reply to this one. I just found out I have a 1.6cm cyst on my spleen. They said it us growing. Had cat scan..they didn't "know exactly where cyst was" then they did an ultrasound..as I am having pain – sharp at times under left ribcage. They don't seem very concerned. They called me today with results. Cyst is inside spleen? Growing. They don't seem to concerned at Hematologist office. Frustrating.

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@ellana5
Welcome to the group!
Cysts don't seem to be a problem as tumors are.
My doc just found one in me, too.
The cyst is in my spinal canal.
They are just going to wait and see.
I did some research and that is the correct thing to do.
If you are concerned, either do some research or find another doc.

Good look!
Ronnie (GRANDMAr)

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@grandmar

@ellana5
Welcome to the group!
Cysts don't seem to be a problem as tumors are.
My doc just found one in me, too.
The cyst is in my spinal canal.
They are just going to wait and see.
I did some research and that is the correct thing to do.
If you are concerned, either do some research or find another doc.

Good look!
Ronnie (GRANDMAr)

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Thank you so much for your kind reply. I'm sorry to hear about your cyst. I don't know why I get so many. I needed to have my left ovary and tube removed in 2011 due to several large cysts found and also on my right ovary. I constant get "abnormal" mammograms, have to go back..and they say it was false, as I have a lot of cysts there too. Now one on spleen and small one on wrist. It's no fun. I'll try not to worry to much and hope we both have a wonderful recovery. ☺

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@travelgirl

@ellana5 It can be very frustrating dealing with Dr's I agree. Just like @hopeful33250 said I would go for another opinion. You need to obtain copies of all your medical records and tests. Take them to another hematologist. How was your blood work?
Getting more than one opinion is really important in order to get a proper diagnosis.
I wish you best…
Jackie

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Thank you. My blood work when I went back to follow up was much better. Red blood cells better. Glucose better. No longer in critical anemia stage, but borderline now. The office just called me to set up B12 injections. I will have a "wait and see" with this Hematologist, as any others are too far and I have a lack of transportation and have to pay for a shuttle, the further the distance, the more I have to pay them..she is in my network. But will definitely consider another one if I am having problems again..thank you so much..☺

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@eliana5

Thank you. My blood work when I went back to follow up was much better. Red blood cells better. Glucose better. No longer in critical anemia stage, but borderline now. The office just called me to set up B12 injections. I will have a "wait and see" with this Hematologist, as any others are too far and I have a lack of transportation and have to pay for a shuttle, the further the distance, the more I have to pay them..she is in my network. But will definitely consider another one if I am having problems again..thank you so much..☺

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I'm so pleased to hear that your blood work results were improved, @eliana5. That is good news! I understand that B12 injections can be quite helpful and give you more energy!

Liked by eliana5

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Thank you! ☺ with the insomnia I am experiencing, I hope the B12 does not make it worse since it gives you more energy..😕

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@eliana5
I believe you will be more relaxed (hence more energy) but it will probably not cause insomnia (at least no one I know has mentioned that when they were taking the B12 injections). Do you have an appointment scheduled for the start-up of the injections? Will you let me know how you feel when you being them?

Liked by eliana5

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Yes, I have scheduled injections monthly at the Hematologist office. I will be sure to let you know. I don't want my case manager to take me just to get a shot (due to lack of transportation or it being expensive – shuttle, she takes me to all my Doctor's appointments) but I decided to get brave yesterday, and take another one. I made sure to have something to eat before, and it did not bother my stomach, although I did experience a little nausea. I don't know if it was that or not. I'm feeling brave again this morning and will take another one. If they continue to not bother my stomach, will cancel the shots..as it is too expensive and a bit inconvenient to wait and wait in a waiting room just for a shot. I'll be sure to let you know if I end up getting them. ☺

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@eliana5

Yes, I have scheduled injections monthly at the Hematologist office. I will be sure to let you know. I don't want my case manager to take me just to get a shot (due to lack of transportation or it being expensive – shuttle, she takes me to all my Doctor's appointments) but I decided to get brave yesterday, and take another one. I made sure to have something to eat before, and it did not bother my stomach, although I did experience a little nausea. I don't know if it was that or not. I'm feeling brave again this morning and will take another one. If they continue to not bother my stomach, will cancel the shots..as it is too expensive and a bit inconvenient to wait and wait in a waiting room just for a shot. I'll be sure to let you know if I end up getting them. ☺

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@eliana5 Taking vitamins with food is always a good idea.

Liked by eliana5

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I am new to this forum and discovered it while searching for information about splenectomies. After reading through the thread, I decided to add my story. I hope it's okay that I added it here. I apologize for it being so lengthy – I added as much information as I could.

A year ago, my family doctor sent me for a sleep test after he noticed that I constantly complained about feeling run down, tired and sore. I work nights and I had already concluded that my fatigue was the result of my working hours, but I decided to go through with the sleep test anyway. After a rather frustrating process, I was diagnosed with severe sleep apnea and I now use a Bipap machine. For a short period of time, I felt better and more rested. Unfortunately, it didn't last.

The fatigue returned pretty quickly. As before, I'm constantly feeling achy and sore. I take Ibuprofen like it's going out of style and that has limited a lot of the soreness, headaches and so on that I've been experiencing. After another consultation with my family doctor earlier this year, he noted from some blood tests I'd done a while before, that my blood platelet level was 62 (which I'm assuming is 62,000?). He decided to refer me to a hematologist to be on the safe side – essentially to "cross all the t's and dot the i's" as he put it. He told me that 62 might just be my normal level.

I first saw the hematologist back in May of this year and he promptly told me that 62 is no one's normal. He asked me to get another blood test and sent me off to get an ultrasound as he suspected there was a possibility that my spleen was enlarged.

The blood test again showed my platelet level to be about 62 – all of the several blood tests I've done since range between 62 and 72 – and the ultrasound showed that my spleen was not enlarged. The ultrasound did show that I have a large mass on my spleen and that it's most likely a cyst. After receiving the report, my family doctor referred me to the hospital for a CT scan.

I did the CT scan at the beginning of July and it showed a large 16.3 x 13.2 cm cyst on my spleen. The hospital concluded that it was most likely a hydatid cyst. I had a blood test and stool sample test to try to determine if my cyst was parasitic in nature and both tests were negative for parasites.

The hematologist recommended I get a lung x-ray to ensure that I did not have any other cysts. The x-ray showed the cyst on my spleen but did not reveal anything else. The hematologist thought it unlikely that the cyst was responsible for my low blood platelets so he told me I might have an auto-immune disorder called ITP.

To cover all the bases, the hematologist referred me to the hospital to have a blood test to see if the splenic cyst might actually be a hemangioma. The test was negative.

The hematologist also referred me to an Infectious Disease Specialist. Back in 1990, I spent 3 weeks visiting my father who worked for the UN and was stationed in Honduras. Upon hearing this, the doctor immediately decided to refer me to a Tropical Infectious Disease Specialist. He also had me get another blood test for parasites which also produced negative results.

When I first saw the Tropical Infectious Disease Specialist, she had me fill out a very detailed and very intimate questionnaire. After reading my responses and speaking with me, she determined that it was very unlikely that I had a hydatid cyst. Although I had been to Honduras decades earlier, an area more prone to parasitic infections of this nature, I probably had very little exposure. She told me she was 90% certain that I had suffered a significant blow to the stomach at some point which then caused the spleen to bleed. I had no memory of an incident that fit that bill. She then had me lie down on an examination table to see if she could feel the spleen or the cyst and apparently she could. Before this exam was over, a nurse took some blood to check to see if I had HIV, hepatitis, etc. and those results were negative.

A little while before my last meeting with the Tropical Disease Specialist, I got a letter from the hospital to inform me that I have an appointment to be assessed by a surgeon from the Liver and Pancreas unit at the hospital on October 18th. I was asked to complete another parasite blood test at the hospital before this meeting. I've already done the blood test and the results are negative. I got a phone call from the hospital a little while after that to ask me to schedule an appointment for another ultrasound.

My most recent appointment with the Tropical Disease Specialist was on September 27th. She told me that she was scheduling an appointment for me to receive the vaccinations in preparation for a splenectomy on the day after I see the surgeon (October 19th). I asked her if this meant that I was definitely undergoing surgery and she backtracked a little and told me that it wasn't a sure thing yet. However, as the cyst is very large, she said the surgery is likely. She also told me that if the doctors cannot conclusively determine that I do not have a parasite before the surgery, I may need to take the anti-parasite medications at least until the cyst is removed and examined under a microscope.

When I had the ultrasound done a week or so ago, I believe the technician told me that my cyst was encapsulated in the spleen – or something like that. I don't know if this means that the cyst is inside the spleen?

My hematologist is currently on vacation outside the country but he called me and left a message on my voicemail to let me know he had received a copy of the results of my recent ultrasound – which I have not seen. Unlike the first ultrasound, which wasn't done at the hospital and the hospital wasn't able to review, apparently, this ultrasound does show that my spleen is enlarged. According to the hematologist, this is 'good news' as far as my blood platelet level is concerned. I'm assuming this means I may not have ITP after all.

As for possible symptoms I'm experiencing, I feel a lot of pressure on the left side of my body and, more recently, in the middle of my chest below the rib cage. I often get a pinching sensation above my groin, occasional nausea and I feel dizzy quite frequently. Off and on, I get a burning sensation in my stomach. Headaches and mild sore throats are common and I feel very run down and tired the majority of the time. I sleep on my left side and often experience back pain in this area, but it usually doesn't last too long after I get moving around. Of course, as I mentioned, I self-medicate a lot with Ibuprofen, so I don't know if I would be in more pain without it

Currently, I'm counting down the days to my appointment with the surgeon in a week. I'm at the point where I need to know whether surgery is imminent or not. It may sound weird, but none of this feels completely real for me at the moment. I guess that's a good thing because I'm not currently freaking out at the prospect of major surgery. Perhaps if I find out that they're going ahead and I get a surgery date, I'll start to feel very different!

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