Question about ivig and splenectomy

My hemo claims that since ivig works for me that it is an indicator that a splenectomy would put me at safe levels. He says the splenectomy wouldn't be a cure or give me normal levels just safe as that is all they can hope for. I have questioned the effectiveness of splenectomy and questioned the idiom(sp?) test and why we don't do that here in the states. He claimed that since ivig stops the spleen from targeting the blood cells it is all the indication he needs that the spleen is the issue, not to say something else won't take over for the non existent spleen but that I should at least be able to maintain counts over 50. I have read so much that I have become confused with all the information. I was just wondering what your thoughts may be on this. I have had the vaccinations in prep for surgery but have not yet decided if this is a step I want to take. I am pretty sure I don't want to go this route, but my hemo feels we have run out of options. He feels that we can't continue treating with ivig indefinitely and that my levels which drop 2 1/2 weeks after treatment with ivig are not "safe" for me to live with. I have yet to go longer than 3 weeks with no treatment. Last week I was at 75 which dropped from 150 the week before 1 week after ivig. No CBC this week but pretechia starting again so I know I have dropped further. By next week I guarantee I will be in the teens again and scheduled for another ivig. I just don't know what to do. I am thinking about looking for a second opinion a few hours away in Boston. But getting the time for that is going to be rough.

IVIG did not work for me so they are giving me Nplate. my hemo told me that splenectomy is an option if my platelet count does not return to normal within 6 months.
how long have you had low platelets? if less then 6 months you should wait.

as for the splenectomy being a 100% succes considering IVIG works is weired, my hemo said IVIG works on 85% of the people and spelenectomy has a 50% succes rate.

There are theories which some doctors prescribe to that IVIG is a good predictor of splenectomy success. Others believe that steroids or Rituxan are a good predictor. I have looked at various studies but found none that bear out any of these theories.

The PDSA's own bit about splenectomy is worth reading. www.pdsa.org/treatments/conventional/splenectomy.html

Kara:

Predicting splenectomy success by IVIG response is an old theory. It's been proven untrue. You can find a lot of older articles that state that, but newer ones dispute it. If you do any research, make sure to look at the date the article was written.

Also, there is no way to know if a splenectomy would keep you in a safe range. Everyone responds differently, and the only thing that would be helpful here is a crystal ball.

Sorry, I don't remember..what treatments have you tried?

Thanks for the responses.

Sal89- it has only been 4 months. I want to wait at least a year. But my hemo seems to have run out of options for me. I am planning on a getting a second opinion, just waiting for my my mom and step dad to get back from Italy. My step dad sees a really great doctor in Boston and they are going to try to see who he would recommend I see.

Ann- I have read so many different studies. So very confusing because some seem to support what my hemo said and others don't. But I guess that puts enough doubt in my mind that I can't trust the ivig as an indicator.

Sandi- Thanks. I guess I will have to look back and double check the dates on the articles I read, but it does explain the conflicting information. I tried steroids, didn't work. I have also had a four week treatment of Rituximab, my last dose was mid August. But that is it except for the ivig, which I know is only a baindaid. Do you have one of those crystal balls handy? You could make a fortune with one of those!

Going in for some labs later today. Hoping that I am still above 50.

Kara:
The IVIG is just a bandaid but for me everything has been some what successful towards my body.
IVIG bumps my levels up to about 75, dexamethasone bumps em up around there to. If your unsuccessful with all the treatments that it sounds like you may need your spleen removed. You said your going in for labs and you were currently above 50? I've gone almost 3 months now with no treatment or labs done and just found out about a week ago that my levels are at 5. I dont worry that much, just dwell on having to go do IVIG because I absolutely hate it, but i stay strong and you should to.
Your body can turn itself around with this disease which is cool I guess, my body has done that twice now and there is nothing you can do to stop if from coming back. And getting your spleen removed is scary, you'll just have a weak immune system(still:/ ).