Please can anyone who has had the splenectomy done or having it done message me, thank you.

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  • Yes i have back in the summer of 2007 it didn't wrk for me for the two weeks my numbers were sky high but then fell back down rapidly i would get a second opinion if i would had done my research i would have said no to the splenectomy.... Only because i still habe had issues with my platelets gowing up and down... But now thankfully i have been doing good with no meds. Last ivig was sept 2015. I still do monthly labs and im to see my hemotologist next month august...

  • Did you have your spleen scanned first? I am having mine scanned the first week in august

  • The spleen scan hasn't taken place yet, we have only just been told that the splenectomy will be taking place, I asked for the indium scan however was told I wasn't old enough. The doctor I have is one of the best in the world so there is not much point in getting second opinions. How long after getting told you'd be having the splenectomy did you get your spleen scanned?

  • Thank you so much for the reply, so at first did your platelet count fluctuate and then stay at a high figure? Have you faced any difficulties since the operation, have you had to make any changes to fit around the removal of the spleen and has it effected travel to any other countries? Thank you again.

  • No effects I have traveled to different countries i have been good. I have made no changes to my life after my Splenectomy... I can say i have been good.. Yes my platlets were at normal range after the surgery... I was happy and excited. But then again my platelets dropped like two weeks after very frustrating­čś▒... Never had my spleen scanned..

  • I had a splenectomy in 2004 and was in remission for 8 years. A nasty virus started me back on the itp roller coaster. I'm now stabilized with weekly Nplate. Without a spleen I tend to get sick more easily, but travel abroad is fine as long as I get appropriate shots first. Good luck!

  • Thank you for the reply! Do you mind me asking how old you were when you had your spleen removed, during your 8 years if remission did you have to take antibiotics , how badly did the virus effect you? Did your platelets fall down alot?

  • I was 57, have not taken antibiotics except with bouts of illness. When I get a virus my platelets plunge to 5-11 and I'm whisked into the hospital for transfusion and decadron. Usually 3 days til platelets go up enough to leave. I'm now 74 so get sick more frequently.

  • Thank you for the reply, my brother is only 10 and has been a chronic ITP patient for the past 4 years now, I hope you are healthy and your platelets stay high, your reply is appreciated a huge amount. Alsohow long did it take for your scar to heal up.

  • Wishing your brother all the best! If possible, have the surgeon do the splenectomy by laparoscopy. That will be fast healing and a tiny scar. I had my surgery by traditional means and I have a large scar, 4" or so, and had post surgery discomfort and pain for a couple months.

  • Unfortunately he won't be able to have key hole surgery and instead open surgery due to the wanting to make sure the remove the whole spleen.

  • He's young and hopefully will heal quickly. No other options for him? Nplate or Promacta?

  • I would definitely research your options. Remove the spleen, was always the first thing that was done. Now the research shows that should not be the first option. I refused spleen removal. I am 72 have been diagnosed with ITP for the last 9 yrs. I treated with predisone for 8 yrs. Then last year had 4 treatment of rixitinun. So far it has been a year, and my count is over 150,000. It is so hard to make decisions about treatment, because not one thing works for everybody. Try to do some research on the computer and website to see information about spleen removal.

  • Thank you very much for the reply, my brother has had countless different treatments for the past 4 years some which have come from America to the uk to be treated on him, everything has failed to work, our doctor really did not want to go through with the splenectomy however we have tried absolutely everything that we could, i just pray the splenectomy works.

  • Hello there,

    I am 73 and had my spleen taken out when I was 38, my ITP count was 10, and since been around 14 to 38 when I have had my bloods checked, mostly its around the 25 mark. The thing about splenectomy is that you have to be sure that you are immunised and that this is kept up to date, ask your Doctor's, and make sure that that they are fully aware. The other thing is that you will have to take for life, 1000mg of Pen V, penicillin, this is because without a spleen, you body has no T cells to combat infections.

    All that said as I have stated before, on this site, I continued to work as an EMT, till I was 59.

    I hope this is of some help.

    All the Best, Bill

  • Thank you ever so much Bill, my brother is very young and it worries me that after his splenectomy will he not be able to do thing that other people can, we haven't been able to travel anywhere for the past 4 years dure to him being so unstable. I really appreciate you telling me about how it worked for you thank you so much

  • Hello Again, Nidazainab

    People of all ages either by having an accident or illness lose their spleens, and if their Doctor's keep up to speed on their knowledge on the continuing care of these patients, then there is now limits on what those people can do.

    In your brothers case, so long as he does not do contact sports ie Rugby or Boxing, alpine sports, that kind of thing, because of his ITP, then all should be OK, as well.


  • Thank you for the reply and yes he hasnt been doing any form on contact sports for a while so that shouldn't be a problem

  • any one having ITP in Pakistan pls contact me i need some help and discussion

    0321 4699135

  • Sorry im from the UK

  • Hi Nidazainab,

    I son was turning 7 this coming september..he was diagnose last 2015 and tried the following treatments:

    1. iVIg and IV solumedrol which was lasted for 3 weeks.

    2. pred - he responded very well but during the tapering period his platelet went low again

    3. Rituximab - 4 doses once every week from May 15 to June 7 but until now platelet went low to critical level...( i dont know but i want to wait for a couple of months to know if rituximab didn't work

    4. Winrho - his doctors discussed it to us that they might try also this treatment but if this one doesn't work they will consider splenectomy..

    We heard about Indium platelet label scan but this procedure are only available in UK and we are currently base in Saudi Arabia...

    His hematologist really wants to take out his spleen because he is categorized a severe chronic ItP... he is a bleeder also

    This morning platelet reading is 18k with a very little nose bleed ( i think 8 to 10 drops ) no petechiae and no bruises...

  • Hi , reading from your reply you said your son is 7, my brother is 10 and isn't allowed the indium scan due to him being to young so im sure your son will not be able to have the scan either as he is only turning 7, try asking for eltrombopag, that seemed to work on my brother for a long while until its effects stopped working however it was good at the start.

  • Hi, this past July 17th I had my spleen removed and so far so good! Went to my hemotologist today and my count is normal!

  • Thats so good ! July 2017? Do you mind me asking you age, is your scar horizontal or vertical? Are you from the uk?

  • Yes July 2017. I'm 28 and from the US, had liproacopic surgery. I have 4 vertical small scars that they glued together with skin glue, they said eventually the scars will be barley noticeable.

  • Thats so good i wish you the very best and hope you have full recovery and pray your blood results stay high, my brother will be having open surgery so im presuming it will be a larger scar? We had an appointment with his consultant today and he said they want the opp done by September/October. Thankyou so much for the reply

  • Thank you! An yes your brother will have a larger scar and much longer recovery time. Is his spleen too large for liposcopic surgery? If not I'd switch to a surgon that can do liposcopic surgery.

  • I'm 29 yrs old. I get to know about my ITP last year in July 2016 after dental surgery. I tried steroid immuno suppressive drugs. and in last revolade ( eltrombopag) .. Last option was given to me was splenectomy .. But i dint agree for it. Because i m asymptomatic. no active bleeding. Just bruising sometimes . I had my ultrasound of spleen its perfect in size no scar etc. So I'm living with counts of 5, .My platelets never fluctuate up n down. always stable between 5-15.

    If ur brother is asymptomatic then i advice don't go for splenectomy . Might b it work for you brother. But as per my research success rate of splenectomy is very low. people who had remove their spleen. face many issue and also their platelets falls again after sometime.

    whats symptoms ur brother facing?

  • My brother has nose bleeds and blood im his urine which nowis making him at a high risk of bleedimg in the brain, he has been through countless medicines and even on two trial medicines however all have failed therefore we have had to agree with the splenectomy unless his platelets miraculously rise from 7 to 150+

  • V sad to hear that . Yes then splenectomy is the only option left . Consult surgeons too. Ur brother is young recover quickly .

  • I have had a splenectomy not sure if that's what did the trick or rituxamab??, .no one knows but my count has been over 200 for the past couple of years. If l had to do it again would rethink the splenectomy...l can't even get the sniffles without going on antibiotics..the dangers of becoming ill or being around ill people is something l have to live with the rest of my life unless it grows back which it can. So God be with you he will help you decide what is best...

  • Your reply has really really touched me alot, since his illness my faith in god has grown so so much, having been on countless drugs as well as steroids we have no other option but to go ahead with the splenectomy, do you mind me asking your age?

  • Np at all....54

  • I had my spleen out 20 years ago for ITP. It was the best thing ever. It put me in remission for 20 years. However I am no longer in remission, I just turned 60 and dealing with all this again.

  • Oh no! So what medication are to taking? Thats so sad to hear I really hope your counts stay at a steady level

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