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The spleen test?

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15 years 5 months ago #4152 by amsy_j
The spleen test? was created by amsy_j
My hema has been suggesting spleen removal as a treatment option for some time now, as other treatments have not worked for me. But he also said that there is only an 87% chance of success/remition. So i asked him what about the other 13% does this surgery not work, to which he replied yes...that spleen could not be the only organ invovled....I asked him if their was a test they could do to check my spleen ; see if its the culprit and responsible for my ITP. his response to this is that this "test" is not offered in the United States. Is this possible? Does anyone know anyhitng about this?
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15 years 5 months ago #4156 by ted23151
Replied by ted23151 on topic Re:The spleen test?
This is the test
www.virrad.eu.org/public/Indium.html
There are 2 hospitals in England that do it. One in London and one in Manchester.
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15 years 5 months ago #4160 by amsy_j
Replied by amsy_j on topic Re:The spleen test?
why would that test not be offered in the United States? Dangerous? I'm Confused? It seems strange that doctor would suggest the removal of an organ, rather than testing it to see if its working correctly. Granted statisticaly 87% is a high rate of success, but 100% would be higher.
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15 years 5 months ago #4162 by Ann
Replied by Ann on topic Re:The spleen test?
87% success for splenectomy is very optimistic. Most talk of around 65% or at the most 70%.

They don't do the test in the US because basically they don't believe in it. I had the test done and it showed, or we believe it showed, that my platelets are being destroyed in the liver so I won't have a splenectomy. A report is outlined here.

www.ncbi.nlm.nih.gov/pubmed/16405235
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #4164 by Sandi
Replied by Sandi on topic Re:The spleen test?
Amsy:

Basically, the test will show that you're not a good candidate for splenectomy, not that you are. The reason is this: the Indium Screening will show if there is platelet destruction in the spleen. If not, destruction is in the liver or another organ, and splenectomy would not be a good option. If the test does show destruction in the spleen, remission can still be temporary (weeks, months, years), because the liver or other organs can take over the destruction and remission will end.

I guess in the US it's just an easier practice to take the spleen and wait and see. Ann had the Indium done and found out she was not a good candidate, therefore, did not have the splenectomy. She saved her spleen and that is what the Indium did for her.

I agree with Ann, 87% is a high number; maybe short term. Long term success is much lower.
  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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15 years 5 months ago #4183 by karenr
Replied by karenr on topic Re:The spleen test?
I think 87% is too high even for short-term "success." The number I always heard was 66%, but I'm skeptical about that too.

Research (admittedly dated) I did after my 2004 failed splenectomy indicated that older patients have a lower success rate.
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15 years 4 months ago #4188 by amsy_j
Replied by amsy_j on topic Re:The spleen test?
interesting, thank you for responding. i guess im just puzzled why the removal of an organ would even be suggested if doctors aren't sure that remission would occur, regardless if they believe in this test or not...non the less i will be keeping my spleen!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 4 months ago #4217 by Sandi
Replied by Sandi on topic Re:The spleen test?
It's suggested because splenectomy, and also steroids, were the very first treatments for ITP back in the day. There were no other options. That thinking has clung. There is so much more research now about the role of the spleen and what it actually does. Much more than they thought. I fought to keep mine and am very happy with that decision.

Doctors tend to think of it as the cure. Sometimes it is, more often than not, it's not. There are times when it is a very warranted decision, such as when nothing else works or the treatments become too much to handle.
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