It's been a long time since I've checked into the wonderful PDSA site/boards, because its been a long time since the ITP has been at the forefront of our lives (how nice is that?).
My now-adult (22) son had his spleen removed a year ago, and has been apparently symptom-free, with high platelet counts (over 400) ever since. He was diagnosed with ITP in 2011 (had a few likely immune system issues before then), and went on a roller coaster ride for a long period. Steroids didn't succeed in sustaining improvement, and crashes to below 5K sent him to the hospital multiple times. We tried various approaches in hopes of avoiding a splenectomy, which seemed a bit scary and drastic, and various information and accounts on these boards demonstrated that some had success avoiding it. My son wasn't one of those. Steroids were awful and ineffective, NPlate worked to raise counts/rescue but was not a satisfactory lifelong appoach. He did achieve a 13 month remission success with Rituxan, but after that failed to sustain he decided to go ahead with the splenectomy.
For those wrestling with similar decisions, we can share that the surgery (minimally invasive, in his case) was not a big deal (I think a single overnight--no significant pain or complications), and counts shot up (to 875!) and have since sustained around 450 or so. We don't know what the future holds, of course, but I know we appreciated this sort of anecdotal information when searching for the "right" answers, so I wanted to share this happy (for now) success story.
Should we have elected the Splenectomy right away? Hard to say. I don't regret the cautious approach, mostly because I know how much thought, research and discussion supported it at the time. We had some great and not-so-great medical advice (and yes, finding and ditching various doctors and specialists is a grueling process). These decisions remain personal and individual, because of medical differences as well as differences in personality and disposition: there is not a single "correct" approach. Keeping that in mind (as we did), know that in our case the splenectomy decision appears to have been a good one, and a blessing.
Speaking of blessings, here's a wonderful coincidence: while gathered in the pre-op area, worried and anxious as one would expect, the anesthesiologist stopped in to introduce herself. She shared that she was herself an ITP sufferer, and that the same surgeon had removed her spleen 4 years earlier! She'd been symptom free with sustained (higher than typical--above 400) ever since). This wasn't planned (and in fact the surgeon was completely surprised to hear about it when we told him the next day!). Best of luck to each of you in your journey to a peaceful and healthy future!
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