Friday I have my splenectomy consultation

I am really nervous to think about having surgery. It will be the first time, but I know that there's a 70% that this surgery will help me with my ITP. I don't want to be taking prednisone all my life. I have already been taking it for 2 years.

[owenm]

Any questions you have before you go for the consultation, write down and bring with you to make sure you ask everything you want to. Write down anything you wish to remember from the appointment, it gives you something to go back to as you make your decision.

I know how you feel about prednisone I was on it for 18months, and just been taken off azathioprine now after 28months.

[Nasar]

Before taking spleen removal, Atleast try other alternatives, try raw papaya Leaf syrup, Homeopathy, Ayurvedic medicine at least a month and check your platelet count. Might be this will help ful.

[mags4743]

I presume you will be having the indium labelled platelet test before considering having your spleen removed and I'm sure this will be discussed at your consultation. I know what you mean about prednisone - didn't suit me either. Of course if you have splenectomy they recommend taking antibiotics forever. Do let us know how you go on.

[rjsmyth]

Are you in the Uk? - If so have you been offered Nplate?

[NickyD]

I had my spleen removed two years ago, the operation did not work. I have to take penicillin twice a day for the rest of my life. This does not sound too bad but I have to take it an hour before food or two hours after food, which disrupts my day - most days. I was not offered the Indium test and would have had it prior to the splenectomy, if I had known about it. My advice is to ask what other treatments there are before splenectomy. Prednisolone is just ONE avenue to investigate, how about rituximab, ivig, romiplostim, eltrombopag, mycophenolate, azothiaprine and many more. I was not happy when I found out that I could have tried a raft of other drugs prior to having my spleen removed. I am now more prone to infection. NickyD

[4ladylove in reply to NickyD]

NickyD what other antibiotic do you know of that can be taken after spleen removed because daughter was allergic to penicillin when was young?

[NickyD in reply to 4ladylove]

You would have to ask your dr

[ITPGUY in reply to NickyD]

NickyD, so true your post. There is much to try before splenectomy. I had splenectomy four years ago and do not need to take antibiotics all the time. I am more vulnerable for lung and hart infection. Should I get such an infection, I need to take quick action. No waiting over the weekend for antibiotics. Taking antibiotics all the time makes them of little value when you need them. Get a better source of doctoring.

[NickyD in reply to ITPGUY]

Thank you for your ideas

[5052]

ii am from Australia i am now 60 years old in 2004 i had my spleen taken out and had a normal platelte count for 9 years. i was never on antibiotics didn't k now about it until i have just joined these forums . but one month ago it came back tried Prednisolone, does not work for me then ivig lasted 3 weeks so now i am going to give eltrombopag tablets each day a go if i was going to have my spleen removed i would look int to INDIUM as mags4743 said you should look into this before having your spleen out also you can have foci slpenic tissue ( SMALL SPLEENS) i have a few and want to get this test done so if the little pac men ( thats what i call the killers of the platelets) if they are going in to the little spleens or only in the liver this test should tell you that hope this helps i will post when i get the permission to take eltrombpoag good luck

[gr8tmumof2]

My daughter who is 6 yrs old is getting her spleen removed too on July the 8th not looking forward to it at all. And she has been threw all the different paths that we could of taken rituximab,ivig, eltrombopag (27 week trial) and MMF mycophenolate and non of them worked for her, they said that her ITP is to aggressive for the treatments so they have to take her spleen. and like you reabrenda1, she only has a 70 % chance of working and the dr did not seen very confident on that answer....but her dr never said she has to take prednisone after her surgery. she has already been taking it for 3 years every time she gets an IVIG which is once a week maybe a week and a half. The dr did tell me about a program at the hospital that shows you exactly what they are going to use for your surgery and what they are going to do. i signed my daughter up just so she can better understand whats going on and hopefully make her and me feel better...maybe you can look into seeing if you have that option too

[4ladylove in reply to gr8tmumof2]

My 24yr old daughter just had her spleen removed and she's was on 50mg steroids that had to be continue supose to be until the liver took over the role.as they are to be lower slowly she was lowered to 40,20 went back a week and plalets had dropped to 53,000 so doc add Nplates shot cause of her drop even after the surgery.prednison has been the only thing that has worked to get her platlets back up right away so prednison was upped back up to 40mg .doctor appt tomorrow to see where numbers are now and without a spleen!! Hopefully it's better numbers as we are praying for some type of stabilizing'id not we are on the hunt again without a spleen and More added risk!! But remember everyone different.and if have exhausted all other medicines like my daughter'its always a chance of a better outcome! Good luck to Ur Daughter.

[janran]

Hi reabrenda

Dont know if you are in the UK but you should definitely ask about having indium scans before considering a splenectomy (if you haven't already had one). This will show where in the body the platelets are being destroyed and give better odds on the likely success of removing your spleen. My haemotologist was very keen (a lot keener than I was!) to give me a splenectomy but the indium scans showed that my liver was the main culprit and that the op would have been pointless. Luckily I didn't have to go through an operation to find that out.

hope all goes well for you Janet

[catherineb]

our son have his spleen removed in Feb 2013 aged 6 after 3 years of drugs and two major bleeds the last happening on xmas day 2012, which was touch and go!!!!! he had previously had Rotuximab, Elthrompag, steroids, platelet transfusions and blood transfusions all unsuccessful. Basically 3 years of torture and hospital visits. I did ask about the indium test but our little boy was to small for this test, no hospital told be about this test we found details on the internet and approached the hosp prior to his surgery. After all this I am currently delighted to say after having a platelet count of 3 for 3 years the last count was 396, which is a dream come true, we are back up at the hosp on the 15th July for a check, we can onlly trust in god that it is still up. good luck with all your cases, I feel for each of you, All I can say is DO NOT BE AFRAID TO ASK ALOT OF QUESTIONS AND ASK FOR A SECOND OPINIONWE DID, and at times the second opinion did not agree with the original opinion..........

[4ladylove in reply to catherineb]

So what are u saying that worked for your son?

[catherineb in reply to 4ladylove]

My sons surgery worked brilliantly for 11months and 2 weeks, life was fantastic, only feb of 2014 we noticed the brusing return and sure enough the platelet count had dropped from over 400 to 8, my world fell apart, he turned 8 on the 7th January 2015 and his platelet count on the last check sits at 11, only this week im sure its alot lower just looking at the rash and bruising :(, he takes penicillin morning and night in tablet form and has done since his surgery, genearlly he is a very healthy happy child but it breaks my heart that he cannot partake in football and rugby etc like his brothers!!!!!! they did offer me the other (Roxiplossin spelt worng) new drug on the market but it was injection weekly and only brought his count up to 30 ish! should his count be 30 or 11 they still fall in the same danger catergory and i just couldnt put Frank through anymore drugs without a guarantee of success, each time we were given very high odds of success and never once in 5 years did any of the drugs we give Frank come close to success or even close to ma safe margin.

Franks count sat at 3 for 3 years two major bleeds and both times we thought he was gone but he is a fighter and we can only pray now that we have no more bleeds and one day his body fixes himself!!!! we havent been in the hosp for a check in 4 months (only i took hime last month to check for myself) we only attend speratically for a blood count or in a case of an emergenies!!! i hope this helps!!!! beast of luck in making your decision.

Can i just say we made the decision to remove Franks Spleen after his second major bleed on Christmas day 2012, it was our only alternative at that time, we had no other hope, we had exhausted all other routes.

[Nidazainab in reply to catherineb]

How was he after the operation

[gordontardio]

Like you I was not happy with prednisolone. I have tried various other medicines with no good results. I even went natural with TCM to no avail, though it greatly helped my health in many other ways.

I changed my outlook towards prednisolone when I was prescribed Azathioprine along with it. Exactly the opposite side effects. Also I follow a regimen of Chinese medicines for the hypertension in me caused by prednisolone.

Once spleen removed, it can't be put back. And you need long term use of corrosive meds then also...

Btw, I am happy to keep my platelet level above 10. I get no bruising, no bleeding, etc. And I work physically, and scratch myself more than my doctor approves of!

[Older_Guy_With_ITP]

I was diagnosed with ITP back in 1987, when I was 32 years old. After an initial treatment with steroids, I had my spleen removed approximately 2+ months after initial diagnosis. In my case, my platelets went up to normal, and my ITP stayed in remission for 27 years after that. I thought I was finished with ITP for the rest of my life, but it just came back a week and a half ago, and so I am being treated for it again, currently with IVIG infusions. I really can't complain, because 27 years without any ITP symptoms was an amazing gift to receive.

[Older_Guy_With_ITP]

I want to follow up further on the reply I just gave. After my splenectomy, I was not advised that I needed to take antibiotics for the rest of my life. In fact, I went on to live 27 years of a very "normal" life with absolutely no special medications at all. I was even able to purchase life insurance earlier this year without any special rating due to my ITP 27 years ago, because I and my doctors felt that it was no longer an issue in my life. But, as I said, it has come back as of 1 1/2 weeks ago. Needless to say, I was quite shocked. After a strong dose of steroids over several days, the current strategy for my hematologist is IVIG.

In spite of the fact that my own experience with the splenectomy was very positive, I agree with the others who have replied that it should not be entered into lightly, and all other avenues should be explored first. I was very lucky in that I had a good experience with my splenectomy, but obviously that is not the case with everyone. I tell you my story to encourage you in the event that you end up having to go through with it, to let you know that some people do very well with it. But I certainly am not encouraging you to have one, except as a last resort.

[angelarosemarie]

I was diagnosed with ITP 29 years ago and had my spleen removed after no success with steroids. The splenectomy did not work for me and I also was not advised to take antibiotics. My hematologist gave me a pneumonia vaccine shortly after the splenectomy, but I don't often even catch a cold or get infections. I thank God that I have lived a fairly healthy 29 years except for the ITP. I am now on NPlate shots which I have been getting every 2 to 4 weeks which is a lot easier that getting IVIG.

[ITPGUY]

I have ITP. I have had my spleen out. Here is my help for you and my story. Had operation when 72.

Splenectomy is a serious operation. It can be done orthroscopicly and that is how my splenectomy started, and then they opened me up to make sure they got all the spleen. Was opening up my belly necessary? I have questioned that. Why? A learning surgeon did my operation at a teaching hospital. Cutting my tummy open provided a teaching opportunity for the hospital. During the process my intestine was accidentally cut. The learning doctor must have made a mistake. They saw the mistake and closed up the intestine cut. I was in the hospital additional days due to this error.

If I had the splenectomy to do over again, I would have it done at a non-teaching hospital. Find a surgeon that has a good history and reputation. Also, find a hospital where you will not catch a terrible infection.

Removal of my spleen gave me a platelet count, high enough, that I can live a normal life, but not high enough that I am out of danger. My count is not 29 to 55, but can dip to 14 if I get sick. I believe the operation was a success. I fear a bleed in my brain called a stroke. I still get large bruises. When I see a large bruise, I get a platelet count.

I am still irritated that the medical field cannot determine the cause of ITP. It is a orphan disease that does not get much interest.