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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