Splenic Cyst

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

@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?

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. ☺

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

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!

Hello @kmg365 and welcome to Mayo Connect. I appreciate your very detailed post. I would also like to invite @JustinMcClanahan to this conversation.

I can certainly understand you when you say, "but none of this feels completely real for me at the moment." You don't mention where you live or what type of hospital you are going to, but please know that it is always your right to seek a second opinion. As you situation is quite complex, I would certainly recommend that you be seen at a medical center that has a multidisciplinary team approach such as a university medical school or a place like Mayo Clinic.

Most insurance companies will cover a second opinion. Have you considered a second opinion?

Thank you @hopeful33250 for your response and advice. I live in Ottawa, Canada and I'm currently being seen by a physician (the Tropical Disease Specialist) from the Ottawa Hospital - which is actually a collection of 3 hospitals in the area, I believe. I've not met with the surgeon yet - the appointment is on the 18th of this month - but he or she will apparently be from the 'Liver and Pancreas' surgical unit of the hospital.

I have online access to some of my medical records from the hospital and I found a clinical note from the 18th of September where a group of 12 doctors, who I think are part of the Liver and Pancreas Surgical team, discussed my case. Their consensus, at that time anyway, was that there was not an immediate need for splenectomy unless I was symptomatic or the hematologist felt surgery would help manage my low platelets. I don't know if 'symptomatic' means something beyond the pressure, dizziness, fatigue etc. that I'm already feeling regularly (assuming those symptoms are connected to this issue, of course). This meeting was also held before my last ultrasound that apparently shows I do have an enlarged spleen - which may be the cause of my low platelets.

I probably will not get to see the results of the ultrasound until I meet with the surgeon. So, I don't know to what degree my spleen is enlarged or if this latest finding changes anything one way or the other. I do know that I'm feeling pressure in my chest in areas where I didn't before, but I'm not sure how significant this is.

So far, I haven't thought about getting a second opinion. If they decide surgery is necessary, I may then have to consider my options.

Hello again @kmg365

It sounds like you are advocating and researching for yourself as much as you possibly can at this point.

Will you continue to post and let me know how you are feeling and also how you are doing with the decision for surgery?

Thank you @hopeful33250 for your interest in my situation!

I met with the surgeon yesterday and things did not go as I expected. Essentially, the surgeon, speaking on behalf of a group of surgeons, said that barring any complications or intervention by the hematologist or infectious disease doctor, should one of them believe a splenectomy necessary, he feels that I should ignore the cyst and just live with it. He said that even if it ruptured, it probably wouldn't be that big a deal because it is most likely not a hydatid cyst. This was contrary to everything I'd been told up to that point by other doctors. He also told me that he did not think that my low blood platelets were connected to the cyst.

It also seemed strange to me that the surgeon didn't know if one of the other doctors, the hematologist or infectious disease specialist, had already decided on a splenectomy. I was under the impression that he automatically had the final say, but that's not the case apparently. I did finally get the anticipated lecture on taking too much Ibuprofen, though!

Since I regularly feel pressure and discomfort in the abdomen, most frequently on the left side it seems, the next step is for me to get an endoscopy to see if I might have any GI issues. However, if they determine that the cyst is causing the pain, they may end up recommending a splenectomy.

I do appreciate your sending me an update, @kmg365. It sounds like you did not get the direct, clear-cut answer that you were hoping for and I'm sure that was disheartening. However, following up with a GI doctor for an endoscopy sounds like a good idea. Sometimes you have to rule-out all other possible diagnoses in order to come up with an answer to the problem

Have any of the doctors you've seen given you any possible reasons for the low platelet count?

Will you you keep in touch? I would like to know how you are proceeding and if you find a answer to your pain and low platelet count.