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Spleenectomy

Whitespot profile image
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Has anyone had any luck with spleen removal?

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Whitespot profile image
Whitespot
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12 Replies
Hogze profile image
Hogze

Actually, it went good for me for a few months, until I had a crash again. Afterwards, I had the Rituximab sessions, and now I am in a remission for 7 months. I wouldn't recommend for you to do the same, as you probably know, splenectomy is an irreversible operation. If I could go back in time, I would give the Rituximab a try first.

Whitespot profile image
Whitespot in reply toHogze

What were your side effects from rituximab

Whitespot profile image
Whitespot in reply toHogze

What are your counts noe

Hogze profile image
Hogze in reply toWhitespot

They gave me some medicine to minimize the effects of Rituximab, so actually I did not feel any noticeable side effects. And my count now is about 150,000. Of course it differs from one person to another, you just should take that into consideration.

Billmox profile image
Billmox

Hello There, I had my spleen removed when I was 38 with a count of 10, I am now 71, my platelet count in all those years has been about 25, I was on steroids for 3 months till the splenectomy.

I have never been on any type medication such as Rituximab. I have had surgery both minor and major, and to build my count been given steroids and for the major an infusion that boosted my count for a sort time to cover the major.

Having no spleen means that you must be on a daily dose of antibiotic, PenV in my case, and be vaccinated for Hib. B,C, Meningitis, Pneumonia and most other things that T cells, that would normally live in your spleen and fight infection

Given the above, I still worked as a Ambulance Technician, on shifts on the front line, till retirement. So it does not mean an end to normal living, just a in different way.

Cheers to all.

NickyD profile image
NickyD

I had a splenectomy and it did not work for me. My count went up the day after the operation and then crashed. I have to take penicillin twice a day for the rest of my life and i am a priority for flu jabs. I am also on mycophenolate which depressed my immune system and so am prone to infection. If i could turn back time i would not have had the splenectomy. It was unnecessary. NickyD

JasonJ profile image
JasonJ

Hi I am having mine removed in April, no exact date yet. I will keep you posted!

I have tried pretty much everything else, if this doesn't work it's going to be Nplate.

I will have to have the flu jab and meningitis jab once a year.

/Jason

goldylockz1 profile image
goldylockz1 in reply toJasonJ

Did the surgery work out?

takari profile image
takari

Before you get your spleen taken out, get an indium scan. It is a nuclear study that will tell you where your platelets are being destroyed. If they are only destroyed in the spleen which for the majority it is, then splenectomy should be very successful for you. If you are like me and you have a mixed sequestration which is when the liver and spleen both destroy platelets, they you are not a good candidate for the surgery. I feel this test is an absolute must before you even consider a splenectomy. You didn't say where you are from but you will probably be told that they do not do this test in the US (if you are from here) but you CAN get it done and I did. I had mine done at Crouse Hospital in Syracuse, NY. They remove 60ml of blood and separate out the platelets and radiotag them with indium (a radioactive substance). They then do scans over the next few days to follow where the platelets go and where they are destroyed.

RobertSp profile image
RobertSp

I had a spleenectomy in 1990. My platelet counts stayed up for about 6 years, then slower lowered. Another hemetologist told me that they are not so quick to do spleenectomies these days. The iridium test sounds like wise advice to me. It was not available in 1990. I have been vaccinated for several things, pnemonia, flu, etc but I am not taking regular does of antibiotics. I continued in the military for 14 years after the spleenectomy with no problems.

jck309 profile image
jck309

I am 38 years old, I had my itp 23 years ago. I had my spleen removed in 1993, I have a big scar to show for it. I been running high platelet count, I have to worry about blood clots, I take a low dose aspirin to help with it. I don't see any side effects from the surgery besides high platelet count. I am living a normal healthy life.

falanw profile image
falanw

I had mine removed to and didn't help my count is all over the place aND the bad thing about that it once it gone you get sick easier  cause you have no immune system 

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