Update nearly 4.5 years after splenectomy

It has been forever since I posted anything here, but I decided to do a long-overdue update. I had a splenectomy for ITP in August 2009 (female, age 20) after doing courses of prednisone and Decadron. Since then, I've been in complete remission with counts in the 300s or higher (they shot up to nearly 1 million right after the surgery). I sometimes notice new petechia, but haven't had any reason to go back and get counts more often than at my annual physical. Otherwise, I've been healthy and haven't had any major illnesses - just a couple of sinus infections and a few colds. I actually seem to get sick LESS often than before, but that's probably because the surgery inspired me to get more sleep, eat better food and get more exercise, and be more diligent about hand-washing frequently.

The one interesting thing I found out in 2012 was that a CT scan I received in 2009 (for continuing pain after my splenectomy) showed a 1.5 centimeter accessory spleen. The doctor who shared the results with me in 2009 had neglected to mention this finding, but I read it myself on the report when I finally got around to ordering a copy in 2012. My question - does anyone here have any knowledge about whether a person with an accessory spleen post-splenectomy (and in full remission) will have reduced risks of sepsis or other infection? I've been looking around online, but haven't been able to find anything conclusive. I would be pretty happy if there were some definite benefit to keeping the accessory spleen, especially since I haven't relapsed. If anyone could share any information with me, it would be much appreciated.

Thanks for posting your update, sometimes we never know the success stories. It helps others who are making their decisions.

Interesting question about the accessory spleen. Sorry I don't know.
Erica

I would think an accessory spleen could function somewhat. It could be filtering bacteria like the old spleen did. There is really no reason to think about having it removed. This is a good question for your doctor.

This is what I dream about... getting my "bad" spleen removed, being cured of ITP, and having an accessory spleen take over the job of the old spleen.

I don't know the answer to your question but enjoy the thought that it may be true

Kristine - your spleen isn't bad. It's doing what it's supposed to do. Your cells are bad, producing antibodies that make your platelets look naughty to your spleen.

Kristine - your spleen isn't bad. It's doing what it's supposed to do. Your cells are bad, producing antibodies that make your platelets look naughty to your spleen.

Oh great.....Now I have an image stuck in my head of a giant platelet, dressed in a trench coat, hanging out on a dimly lit street corner at 3:00am in the wrong part of town.

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Isn't that what it really looks like? :ohmy:

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It isn't a giant platelet!
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It is a dirty old man and every so often when platelets walk by he rips open his trench coat and flashes them.
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They get scared sh**less and soil themselves.
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That is when the big mean spleen says something's wrong with these guys and scoops them up and away they go!

Where do you guys get those imaginashgins?

I can provide a similar, positive update. I had my spleen out 6-1/2 years ago, and have kept counts in the high 300s ever since. I have had no infections or other abnormal situations since. Since I have psoriasis and psoriatic arthritis, I do take azathioprine (imuran), which may also end up holding off a return to active ITP.

Good to hear from some of the success stories. Thanks for the update.

Wow - has it been that long already? Time flies!

I am amazed at how prevalent ITP is. My diagnosis was in 1982 and I was 15 years old. My parents were crazed with worry. I can still remember my mother wringing her hands as she would sit and wait for the results from the doctor's office. It was always the same thing: high doses of prednisone then as dosage went down, so did the platelets. That went on for 6 months. Long enough to gain lots of weight, develop the moon face, and depression. After I was sent to an oncologist, and all the elimination tests were completed, the doctor saw no need to continue prednisone. I was scheduled for a splenectomy and within a week my spleen was removed and I was on the way to recovery. I always thought I was 1 out of a million with the disorder, but now I am finding out there are many. I was never told until 15 years after my surgery that a person is not cured of ITP. And today I find out that ITP is not a malfunction of the spleen. We always wondered why my spleen looked perfectly normal when I had the liver/spleen scan. We just assumed it was something no one could see. I'm also finding out there are new medications and some of them do work. The whole thing is just so interesting and I just wish my mother was here to see all the cases, research, and sharing going on. What a wonderful thing social networking is.

Carol:

Very true. There were not many choices in 1982. My sister also had ITP around that time at the age of 15. She did Prednisone on and off for a year and then went into remission. She never had a recurrence. My Mom was given the choice of splenectomy, but refused. Things are much different now; there are so many more choices and patients are much more informed.