TOPIC:

Doctors want to remove Alicia's spleen. Treatments are not working, last meds were N-Plate and it did her nothing but cause her pain and bad reaction. I dont know what to do, there is a 50%chance this will not work. I am scared!!!

Hi

I think that the decision to move ahead to splenectomy is a very individual one and can only be based on what you think is best for Alicia. For me, its probably the last thing we would try, but that decision is based on our circumstances not yours.

If it was me, I think I would feel happier about the decision if I had considered the following sort of questions:

- Can Alicia just live with low counts? For my son this is a very real possibility and he's spent the last year getting on with life on a count of 5-15 - he definitely doesn't like it, but its probably better than some of the treatment options (IVIg was a bit of a disaster for him)

- Have you tried or at least considered and discounted all other treatments? Try the International consensus report on the investigation and management of primary immune thrombocytopenia if you want somewhere to start

- Are you convinced that she won't just remit all by herself? My son's doctor says that about 10% of his chronic patients just get better all by themselves each year, and that is why I think splenectomy is so far down my list of options - it seems a bit drastic to lose a vital organ over something that might go away by itself.

- Do you feel pushed into the decision by the doctors or are you yourself happy that you've got all the information and time you need to make it?

- are you happy with the probability of it working? For me, I'd want something in excess of a 90% chance of it working for me to consider it for my son.

- are you/Alicias doctors 100% sure that there is nothing else going on with Alicia? Having a splenectomy might be a bad idea if she develops some other conditions later on.

- how does the risk of mortality from having no spleen compare to the risk of mortality from ITP? I don't know the answer, but I think this is really the only issue that matters to us mums.

I think if you've considered all of this and the answer is still yes, then its a good decision regardless of the outcome. Good luck with whatever you decide, and let us know what happens

Ali

Ali - fantastic questions!

Thank you, you gave me alot to think about. Your son has lived with counts as low as 5 with no treatment for a year?

Well, he's had ITP for about three years now, and for two of them his count has mostly been under 20. The last year has generally been somewhere between 5-15. He tried prednisolone briefly three years ago (didn't have much effect) and IVIg more recently (horrible headache for days, wouldn't do it again). I would say his count is about 5 now based on the amount of bruising. He has a mostly normal life, although he is getting very frustrated with activity restrictions (I am also getting a bit frustrated with his refusal to take much notice of them!)

Hope my questions don't give you too much of a headache - I don't envy you the decision at all!

KMS2012

I was thinking more about your decision, and I thought of a couple of other questions I would want to be clear about:

- What are the risks associated with having a major operation and anaesthetic?

- What are the possible implications of being spleenless in terms of treatment etc? I think I've read that you are advised to go to A&E if you get a temperature. It seems like you might just be swopping ITP worry for spleenless worry!

Here's one of the reasons why I consider this a last resort -

Just before Christmas, my son slipped and hurt his leg. He had a tiny graze and a massive hematoma. We got him checked out at A&E and thought everything would be OK. About four days later it became clear that he was limping more and more, and when I looked his calf was really swollen - about 12cm larger than the other one at its worst. He ended up in hospital for 4 days receiving IV antibiotics because he had got a skin infection called cellulitis. All of this was really horrible and worrying in itself, but it would probably have been much much worse if he didn't have his spleen.....

All the best, Ali