Question has anyone had a splinactamy

My son has just been told that he needs a splenactamy has anyone had one and were do I go to find out the pros and cons to a splenectamy spelling not great at the moment

What treatments has your son tried? How old is he?

There are many discussions regarding splenectomy on the PDSA. You can do a search or just go through the threads and read away.

I can tell you this: splenectomy is becoming an obsolete treatment for ITP according to some of the experts. There are so many more options than there used to be.

This is a good video to watch:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

I had a splenectomy about 20 years. My blood counts wouldn't stay up without heavy steroids. With hindsight, I think they jumped to it too quickly but this was 20 years ago and the treatment options were less. I know I am more likely to have problems with opportunistic ilnnesses, but I haven't had any issues yet. My platelet counts are usually closer to 250K now; at my lowest it was 2K.

I have had three. My first in 2000 with only 2k platelet count and 50% of survival. I found out last year I grew an accessory spleen, so May of this year they took that out AND found some kidney shaped things on my colon. Doctors scraped one out and biopsied it and it came back posative for spleen tissue. So the next day they opened me back up and took out the other three. I just got out of a week long stay in the hoospital trying to get my platelets above 10k. They did not work for me and thank goodness for insurance.

I had mine in 2006, two years after being diagnosed with ITP. Unfortunately it didn't work for me. I can't say I'm sorry I went that route, just disappointed that it didn't work. How long has your son had ITP? If it's not that long, he might be better off waiting, unless he has some serious issues. Good luck.

PS. where in Canada are you?

I had one thirty years ago (I was already and adult) because steroids weren't working. I was in remission for about twenty years. Fortunately there are many other options nowadays. I would check them all out before going ahead with the spleenectomy (as this is irreversable.) You have come to a good place for support and advice. Christine

I also had my first splenectomy 20 years ago. I was fine until 2005 when the platelets dived again. An acesssory spleen was suspected and removed in late 2005. I have struggled off and on since then with Rituxan infusions as treatment when necessary. My former hematologist kept suggesting more acessory spleens, which is why he is my former hematologist. My current hematologist only treats when extremely low counts with bleeding occurs and agrees with me that any more spleens will stay where they are!