Anyone have their speen out? - ITP Support Assoc...

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Anyone have their speen out?

dunn258 profile image
19 Replies

My doctor has decided I need a spleenectomy...who has had this and does it work to make more platelets?

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dunn258 profile image
dunn258
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19 Replies
DJ99 profile image
DJ99

I had my spleen removed a few months ago. I was pretty worried about it from everything I read here but decided to do it.... my platelets immediately went from the low 60’s to mid 300’s. It also fixed some other issues that I was experiencing. Unfortunately, lots else still wrong with my lymphocytes, hemoglobin, WBC, IgG etc... The reason for the splenectomy was that they needed to biopsy it for diagnosis plus is was massive in size 2.5x normal and very uncomfortable.

eciardullo profile image
eciardullo in reply to DJ99

Don't l had mine out and regret it. No spleen means you immune system has been compromised so you have to spend the rest of your life being careful. I was just hospitalized for periocardidis how? Due to a virus. You will be open to alot some you can control and some you can't there is always that unknown of what others maybe carrying that you will be susceptible to because you have no spleen. Don't do it..that's my recommendation..

lillaa profile image
lillaa

had mine out in February, count went from 5 to 1200. If you're near a center that does Indium platelet scans, look into doing one (it tells you where the platelets are being destroyed, it doesn't tell you if splenectomy will definitely work but if it will NOT work)

lmc167 profile image
lmc167

It did not work for me having it removed.

Dahle2424 profile image
Dahle2424

Last Resort Option & even then I would Opt out. My Count has been At 5K - 7K for 20plus

Years. No Drugs no issues

dunn258 profile image
dunn258

sad and to sure of what to do....praying

Nespinoza profile image
Nespinoza

I had mine removed and it didnt work like from others that had posted after their surgery platelets did go high but then went back down thats what happened to me too. I had mine removed back in July 2007.

rjsmyth profile image
rjsmyth

Absolute last resort action taking spleen out. What are your circumstances? - what is your current platelet count? - what medications have you been prescribed? Splenectomy is not something to have done on a "might work" because it might not!

dunn258 profile image
dunn258 in reply to rjsmyth

blood platelets are 21..No medications have been described...will not take prednisone or anything like that.

conquerator2 profile image
conquerator2

Certainly don't have a splenectomy. In fact, while not common, having your spleen biopsied should be a good alternative, as it is both safe and accurate, according to recent studies.

CDmom profile image
CDmom

Could you possibly have a weird infection that is making your body attack your platelets like I had. My body confused the need to attack the infection and instead attacked my platelets.

Now I am cured....In case it helps I want to share my story with you.

My story: I am wondering how many people got ITP after a trip abroad to a third world country? Sadly, I got low platelet issues that they called ITP! I had bruises all over my body just 2 weeks after I came back from Costa Rica to USA in April 2017.

The western doctors said there was no correlation of the low platelets and my trip and to get used to having an autoimmune disease called idiopathic thrombocytopenia, forever. But I knew that I got the issue from something I caught on my trip.

So, I did not believe them. After being very sick for seven straight months, finally I was cured in just one month after I began the following relatively simple eastern approach treatments that the Western doctors don’t understand because they are not educated in eastern medicine.

September 2017 I went to two homeopathic type practitioners that cured me of platelet crashes by October 2017. I continued to go to one homeopathic for several months just to get my immune system rebalanced.

1. I got rid of parasites through a pill from Vitamin Cottage called Para Rid in conjunction with 3 Rife treatments. Rife treatments are ultrasonic waves used to destroy parasite cell membrane wall. (Similar to how an opera singer can break a glass with her voice) It is important to note they could find no parasites in my stool sample but I did it anyway because parasites are often present but undetected. (And my girlfriend made me go!)

2. I got rid of any lingering viruses, fungus and bacteria and rebalanced my immune system through eastern-based homeopathy treatment. The Avitar machine checked my organs using acupressure points on my hands and feet. Once it was determined what my body needed, the homeopathic selected homeopathic pills and elixirs that treated viruses, fungus, and bacteria and rebalanced my immune system that was attacking it. Additionally, I went gluten free.

After needing life saving IV I G and Dexamethasone bursts every 10 to 14 days for platelets as low as 1,000 from April 2017 until last October 2017, I am cured!

This Oct 2018 is my 1 year anniversary since my platelets have crashed and since I have needed IVIG! My platelets are now stable and within normal limits at 250,000. Hooray!

One final thought to share… I had gone to many immunologists begging them to find some infection that they could treat. I knew in my bones I had caught something from Costa Rica and that I did not have a lifetime of an autoimmune disease ahead of me. I just needed treatment for whatever I caught in Costa Rica One doctor agreed to give me three weeks of antibiotics last June 2017. While I was on the antibiotics my platelets were within normal limits! No cycles of crashes. As soon as I went off the antibiotics in July 2017 the platelets crashing down to 7000, 5000, and 1000 every 10 to 14 days began again. I begged the doctors for more antibiotics and they said no that it was irresponsible.

Again thankfully the eastern practioners gave me homeopathic medicine to treat the parasite infection and cure me!

Good Luck!

Perman profile image
Perman

I had 2 platelet transfusions, worked for me, turned out it was the medication prograf I was on that caused it.

Asimkumar profile image
Asimkumar

Try homeopathy/Ayurveda..

JasonJ profile image
JasonJ

Had my spleen removed 3 years ago. Platelet count fluctuated to start with (60-600k) but is now solid at 120k. It was my last resort, but it worked. The spleen removes platelets from the body, by removing the spleen you take away the main source of platelet removal. However other organs can take over and continue to remove platelets, hence why it can fail.

My count isn’t super high but it’s acceptable and I’ve had no ill effects from removing my spleen.

My platelet count at diagnosis was 3-7k.

dunn258 profile image
dunn258

thank you.;.that is very reassuring...I am planning on having my spleen out. I am praying that it will work and last for a long time....I have heard many stories and I have come to the conclusion that Lord willing it will work...if not...back to the drawing board!

Jazzbo77 profile image
Jazzbo77

I have had ITP for 17 years and was told by 3 drs that it was like a coin toss. 50/50 chance heads or tails you may increase your platelets for the rest of your life or have no spleen and low platelets. They told I would be foolish to have a spleenectomy. The top itp specialist in the country Dr James Bussell said he never recommended a spleenectomy.

Kasra profile image
Kasra

I had mine removed about one and half a year ago and my count came up from 14,000 to 400,000 and it stayed in normal ranges since. Also I had no problem with getting sick and it was no difference for my in that case. So for me it was 100% successful.

RobertSp profile image
RobertSp

I had my spleen out about 28 years ago. The counts were up for several years. Then the counts slowly came down to the sub normal range. I have had no problems with infections etc. I get the flu shot annually. One specialist told me I should never have had it removed. I have done well and I believe it helped but is not a complete solution to the problem.

Espomom profile image
Espomom

My daughter age 28 had her spleen removed 6 months ago. She was convinced she could correct herself with diet and after 9 months of hell on every possible medication recommended ending with NPlate injections. She decided on splenectomy. So far platelets are 400,000. Lowest count 9 months ago was 1000.

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