As I said in my last post, I'm planning to have my spleen removed in 2 weeks, I was woundring if anyone here has done it and was successful. I just want to know how high I can get my hopes up.
Yes i recently on Nov 6 2017
I went up to 44000 now down to 17000
Hi Karsa, - Big Mistake. Removal of the Spleen is not a guarantee. Please read up on the side effects. Once the Spleen is gone - NO turning back. I have been living with ITP for over 30 years. My most recent count is less than 3,000 and have been living with this count (and sometimes less) for a long time. That option was given to me years ago and declined. Having been pron to Kidney Stones for Years and many extractions, I developed a plan with my doctor to load up on Platelets just before the operations. 58yrs old and living stress free.
The doctors told me not to wet shave - wrong
No more skiing - wrong - went skiing last year
Stop riding my motorcycling - wrong
Hi Kasra most people on this site would advise against having your spleen removed. You need to really check this out before proceeding as in a lot of cases it doesn’t make any difference. Good luck
I opted not to have a splenectomy and take Revolade (Eltrombopag) instead. I read up on splenectomy I found that most people have success initially but over time it stops working in some people and platelets are destroyed else where in the body. I understand the success rate was about 60% over the longer term and younger people under 40 have the highest success rate. 60% was not high enough for me to take a chance on loosing my spleen. (Success rate may be higher if you have a Indium scan first).
Your spleen is required by your immune system to fight infection in your body so do some research on the internet there is some good information out there before you decide.
Hi. I had an option many years ago and didn't take it. I have read many stories about the spleen being removed and it was a bad idea. I now take eltrombopag which works very well. Highly recommended.
Well that didn’t go to plan did it? I thought you might get a few people who had positive experiences. It’s a really difficult decision to make without the opportunity to have the indium scan.
When I was first diagnosed I found this site and took a lot of comfort from the people who had low counts but minimal bleeding symptoms and led a pretty normal life without treatment. But there are risks in taking such a decision and it was easier for me to go down this route as I’m a lot older and don’t want to play sports.
Im not sure you should go ahead with this in two weeks if you’re feeling unsure. I wonder if you could get a second opinion from another ITP specialist or at least really talk through your worries with your current haematologist. That might help you to weigh up the pros and cons and make a decision you’re happier about.
Please let us know how you get on and good luck.
Thanks a lot janet, your opinions realy helped me and I will definitely keep you posted.
Hi Kasra. My daughter is 15, had her spleen removal on 16th Jan this year. Her platelets did not shoot up as immediately as the consultant thought they would but they did steadily go up. Her last platelet count was 348.000 and we were told that she doesn't necessarily need to keep having full blood counts unless she becomes symptomatic. Her itp story is that she was diagnosed at 9, within 2 years of diagnosis she went into refractory itp with persistent counts under 10,000 and not maintaining response to dexamethasone steroids for more than a few months. She had a course of rituximab that she responded to well for a year then went back into persistent counts of under 10,000. She really researched treatments and outcomes herself and asked for the splenectomy, she was asking for the splenectomy before she had her rituximab treatments. Her haemotologist wanted her to try rituximab first. She has so far remained fit and well and is very happy that she had the surgery. It is a big operation and needs to be thought about very carefully. Hope this helps you. All the best and Merry Christmas! ☺
It helped me very well !!thank you, I'm planning to do the surgery and what happened to your daughter make me feel a lot better about it.
Wish you the best & Merry Christmas to you too☺
Please let us know how you get on!☺
Thanks heatherjane its been 4 weeks since my spleen removal so am optimistic for a steady climb... i did steriods, rituixmab,and ivig and only the ivig worked for a while and my count droped but i had no visible symptoms.
I was thinking about you over the christmas period and wondering how you got on with your surgery! Did you manage to have it done by keyhole surgery or not? I hope you have got good counts now!
I do thanks 44000 to 17000 to 134000 now 300000
I had my spleen removed. It did help. My platelets were below 20K prior to the removal. However I never had a nose bleed or gum bleed or any other bleed. I would have large bruises. Since the splenectomy my platelets are steady at 35K. I am living a normal life. When I have a large bruise I get tested and they are still at 35,000 and have been there for four years. I am 76 years old.
Looking back I do not regret the splenectomy. The operation was no walk in the park for me. They accidently cut my intestine during the operation. I was in the hospital for four days. Looking back, since I had never had a bleed, perhaps I over reacted in getting the splenectomy. The doctors may have over reacted too by recommending the splenectomy. No going back now for me.
Make certain sure you really have a problem before you get a splenectomy. Second and third opinion would have value. Having a brain bleed (stroke) is a life changing event. We all need to avoid a stroke.
I am eating pumpkin pie filling to help with my platelets. That was recommended on this site. I flavor the pie filling with honey, turmeric and cinnamon. Turmeric fights cancer and cinnamon tastes good.
I have ITP. I had my spleen removed with counts of 50 and other therapies not working. My counts were a bit up and down for about 6 to 8 months afterwards but have been more or less stable at around 300-400 for 20 plus years now. My health has been good for the most part and to be honest it was the best decision I have made. I work full time, returned to college and raised 2 fabulous children now adults. The best of luck with your spleenectomy.
Read the responses, Kasra. Not a good idea. At the very minimum, get a second opinion.
I was against having my spleen removed as I like travelling and doing things, and the spleen helps in fighting of infections, from my research having my spleen removed I would get sick a lot more, have to worry about picking up any viruses etc, so was not for me, I envisioned a life of always feeling ill if I did that and am only in 30's, plus the hematologist said it's almost 50/50 if will work for a person or not, no way to know, and with any operation there are other risks too!
By the way, just like other user here they put me on Revolade and my count is normal now, one 50mg tablet a day. I would personally seek all options if possible before you get surgery which as you will know is no minor thing, and no turning back once you do it, so don't feel rushed if not 100% sure.
All the best.
P.s. my platelet count was always low at around 10-20... Steroids did nothing for me either, only Revolade (eltrombopag).
For those that have had their spleen removed when is the best time to take your antibiotics? At present I take it straight after my breakfast. I’m 5 weeks after having my spleen removed.
I had a splenectomy and it didnt work. Wish i had never had it done.
So far I know that splenectomy usually doesn't work rather increases the risks and the rates of other infections. To my knowledge, people with splenectomy complain about using antibiotics for bacterial infections for days, months and years. On the other hand, blood cells are also being destroyed in the liver. What does your Hema say ? Plz consult with your Hema and have a second thought before going for splenectomy.
Call me on +1(323) 435-7288, I had ITP and a call may avoid spleen removal...Hari
If you haven't already gone ahead with the surgery Kasra for what it's worth my Haemo Consultant was insisting on a Splenectomy for me around two years ago but has now changed his mind.
My pIatelet count is normally between 20-30 but has dropped below 10 sometimes and my ITP is non-responsive to steroids and Rituximab.
I think its important you consultant is understanding and open minded, after all this disorder is idiopathic. Like others on here are saying don't be afraid to get a second opinion, it's your body and each person is different to another.
It may be worth insisting on an Indium Screening Test before you go ahead unless you've already had one?
Either way Merry Xmas and I hope it all goes well for you.
Tnx & merry Xmas to you too !!
My ITP is responsive to steroids but it begins to drop the moment I stop taking them.. I have consulted with at least 4 or 5 hematologosts and all of them are saying its time for my to try spleenectomy, and they say there is a good chance. My surgery is tomorrow.. Dec 19th
Hi everyone, I'm Kasra I had my spleen removed just before Christmas and you all supported me. Now, nearly...
Hi, My name is Kasra, I wanted to know how is the Inidium nuclear scan done, it is in nuclear medicine...
in few weeks which will be retuximab again, but they want me to consider spleenectomy? has anyone had this...
Start a Community