ITP Support Association
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Indium neclear scan, for effectiveness of spleenectomy

Hi,

My name is Kasra, I wanted to know how is the Inidium nuclear scan done, it is in nuclear medicine centers ? And, is this procedure only for ITP or it is a procedure that can be used also for ITP.

I ask this, beacause I have a spleenectomy surgery in 2 weeks, and I would really like to do this test of it is effective. I live in Iran I don't know If anywhere have this equipment in Iran but I also have the opportunity to travel to near countries. Anyway, I would really appropriate any help or information on the indium neclear scan that can show the chance of success in spleenectomy.

Thank you

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Hi I live in England and have had the indium scan in the nuclear medical centre at my local hospital. It was carried out over a few days as an out patient. It was done so it could be determined if destruction of platelets was in my spleen or liver. In my case destruction was in the liver so there was no point having my spleen removed. I think it’s a good scan to have if you can get access to it as it prevents you having surgery that is not required.

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Hello, I also had this scan done at my local authority hospital here in scotland. I had the liquid injected on the monday and then attended for a short 20 minute scan for the following 4 days. My results showed that my destruction was jointly in spleen and liver and therefore removal of the spleen would not have been effectively.

I would definitely recommend this test if you can find a facility to under take it.

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Hi samwright23 did you request the indium scan or did the doctors send you. I also live in Scotland & would like to know where my platelets r being destroyed. My options r getting limited as a few treatment r not working for me thank u x

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Hi, no my haemotolist put me for it after my second round of steroids. the scanner is only available in Aberdeen and i think Glasgow so i was lucky to be able to get it locally. Definitely worth asking your consultant for it.

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Could u explain a little wot it entails if it’s not too much trouble. Thanks for quick response. I live in Glasgow x

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Is it available only in European countries? I live in Ohio, USA and my hemo had no idea on this test and I never heard about it in India as well. :(

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Yes,a few doctors are aware and do this test, my problem is just like you, I wanted to know is it possible that exicting nuclear departments that have the equipments and do other sorts of teat can also do this test but they never Tried it ?

Or there is a specific equipment just for this test.

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Hmmm until you figure that out, please try to postpone the surgery. If it's not worth it, then why loose an organ.!! that was my reason for saying no no to splenectomy. Lets see how long I can manage.

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But I treid everything and everyone says I should do the spleenectomy, no one here knows about this test and my count keep falling every few weeks, on the other hand, I'm afraid it'll be like this after I lose an organ too. And that's the most devestating part. This is why I'm looking for some answers on this test, unfortunately no one in middle east has done this before and talk about it here and I can't reach the Scotland or the US. Thank you all for your guidance and I am more than happy to have your replys.

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If you don't have any bleeding problems then try to go off of all medicines and see if you can lead normal life. I was living without any medicine for 3 yrs with count below 10. Accident risk is there for everyone but for that, we shudn't make our life worse with unnecessary headache and medicines.. You are very young so am suggesting not to loose an organ so soon.!!

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Hi Kasra

I agree with all the advice you’ve been given so far. I had the test in Plymouth in the UK and am not suitable for spleen removal. ITP is a strange disease as it affects us all differently. The biggest risk to us is a major bleed. I sometimes have very low counts but don’t really see any symptoms like bruising or bleeding gums until my count is less than 10. I do respond well to steroids but then gradually the count drops again. Most of the time I manage without any treatment and there are lots of people on this forum who live with low counts. How low is your count? Do you have problems with bleeding?

Regards Janet

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Hi Janet,

It's been 3 and half years since I noticed and it's lowest count was 14000 just ast week, I didn't have any problems with bleeding, just a few sport injuries that took a longer time to heel becaus of my ITP but the Doctors say although I do not have bleeding, and the fact that I'm 22 years old and an active person, the real danger for me is in an accident. I think thats the important reason for taking a treatment , otherwise I do not currently and in normal life have any problems.

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Hi Kasra

I didn’t develop ITP until I was 50 and have never been much of a sporty type so it is a lot easier for me to live with low counts and without treatment.

I can understand why your doctors are advising you to try having your spleen removed. I’m guessing you have tried the newer medications like romiplostin or eltrompobag that stimulate platelet production rather than suppressing the immune system? The ITP Support Association website has really good information on all available treatments.

I think you will find it difficult to get the scan done outside of Europe and you would need a reasonable count of around 40 for it to be possible anyway. Although splenectomy is used a lot less in Europe it is still used in the USA and some people get good results from it. Maybe you will get some positive feedback from others on here who have had a splenectomy if you were to post a question about it?

Regards Janet

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