Splenectomy

Hi so I have had ITP for about 5 years now and I am now considering getting a laporoscopic splenectomy. I am really scared and confused so many people tell me different things. I wanted to share my story and hopefully get some opinions or see if anyone has a similar experience.
My platelet counts first dropped to 1K when I was 16 years old and I was diagnosed with ITP. I was put on steroids (60mg of prednisone) and they jumped up right away to normal levels. They lowered me off for the next couple of months and I remained at normal counts. I relapsed a couple of other times within the next year, (maybe 5 times) but it never really went lower than 20K. The first couple of times that it dropped I was put on prednisone and my count went back to normal. Later when my count dropped and my dr. decided not to give me steroids and my count went up by itself.
After this year of my counts dropping but not low enough to be really scared and my body fixing itself, I had about 2 years of no symptoms at all. The doctor thought that I just had acute ITP and that it had gone away and it was almost like the disease never happened. Then about 2 years ago (3 years from when it started) I went on a trip to California and my count dropped to 4K. I went to the hospital there and they told me I needed to have an IVIG. I was very surprised because I have never done that before because pred. always worked. I convinced them to let me be on pred. to see if that worked and they put me on 100mg (I was always put on 60 so this was a very high dose for me). After 2 days nothing happened and they told me I had to get an IVIG or I couldn't leave the state so I got it done 2 times and my count went up and I could fly home. Ever since then my platelets have been a complete roller coaster. In the past 2 years I have probably been off pred. for a month total.
I am so confused... why did it come back? Did the IVIG do something to me? Have I been on pred. so long now that my body can't function without it? I just don't know, but now I am considering a splenectomy my doctor thinks that will work but I am so scared about the risks of surgery and immune problems without having a spleen. I know there are other treatments but I hate the idea of being on drugs my whole life.
To sum up, (ha ha sorry this is like a novel) I would like more info on having a splenectomy. Is it worth it? I heard the remission time is about 3-5 yrs so it's not really a cure like my dr. said.

Hello. California held you hostage? I never heard of being confined to a state because of a platelet count.

You are saying that you don't want to be on drugs for the rest of your life. That is the goal with every ITP patient. There are some meds that can cause remission that might be worth looking into since you are not keen on splenectomy. The first is Rituxan. Many people respond well to it and have few side effects. Another drug worth looking into is Decadron, another steroid that is stronger than Prednisone but you only need to take it for four days. There are also CellCept and Imuran which are immunosuppressants.

No one can tell you why ITP came back or why you are not attaining remission this time. ITP antibodies can change, they come and go and different ones can appear, so counts and responses vary over time.

As for splenectomy, there is no set remission time. Everyone is different. For some people, it doesn't work at all. For others it works for a few weeks, a few months, a few years or a life time. No, it is not a cure; it's just another treatment. Many of us have chosen to keep our spleens. I still have mine and been in remission for the last six years. My last treatment was Rituxan. I never thought this would happen to me because I was also on and off of Prednisone many times over a period of a few years.

Your best bet is to read about all of the treatments and make suggestions to your doctor. Hopefully, he will realize that this is a team effort and will be open to your ideas. If he isn't and you are really opposed to splenectomy, find another doctor.

I agree that was really strange about California! I guess I filled in the blanks in my own mind and guessed that maybe the doctor said if you leave it is against medical advice and if anything happens your insurance won't cover it?
Erica

HI! I'm dealing with the same situation right now. I was diagnosed 4 years ago and ever since, I've been on and off Prednisone.
I was med free for about a month and my count went from 84 0000 to 20 000 today. It was funny but there was a week when I went from 51k to 70k and then 50k and from there to 20 k.

My Dr insists with the splenectomy but I don't feel like it. I kind of like my spleen... and my younger sister was diagnosed with Lupus 2 years ago... If I'm going that way, there's no need to get the splenectomy, right?

Any suggestions for treatment complements? I'm taking Prednisone, Calcium, Vitamin D and Omeprazole right now.

I did the same thing - on and off of Prednisone for years. It doesn't have to be that way. You can make treatment suggestions and you do not have to have a splenectomy.

www.pdsa.org/treatments/conventional.html

Judy - why do you think you're headed toward Lupus? Splenectomy can be a bad option for someone with Lupus/Lupus tendencies.

khakie,like me i was diagnose itp since i was 16,followed 19,22 and now im already 26,its my 4th times now of having a low count,on and off taking prednisone,my haema told me to have spleenectomy but im still not decided to have that operation ,what im doing right now is read a lot of story in this site and have thyre opinion,for sure they can help you,im new in this forum and honestly they help me a lot,to undrstand what itp means,what to do and so on and so fort,for now just read story of people with itp and those who have already done spleenectomy,my haema giving me 60percent only that my platelet wont fall down after surgery,whats for?? just 60percent chances?i said no way!!! goodluck

Even California can't hold a person hostage for ITP.

I keep reading 40-60% success rate for splenectomy with an average remission of 1-10 years (the younger you are, the better the odds). That is just not all that great of odds. It is literally 'flip a coin'.
If the docs could offer us more than a 40-60% chance of success after a splenectomy, I'd be on the table tomorrow. Since they can't, I won't be. Especially since the odds are even lower for me at age 58.

I had a splenectomy 3-1/2 years ago, at age 48. I actually thought the coin flip was pretty good odds, given that it is for about 10 years of remission, typically. It has worked for me so far very well. The statistics are probably somewhat better than that, too. It is more likely about 2/3 of people get close to the 10 year mark. Younger people do better.

Given the amount of fiddling around and worry I was having with medications, the 'time off' has been really good. All of the treatments have risks, and the overall risks of splenectomy compare very favorably. You do need to make sure you get the appropriate vaccinations, which greatly reduces the risk of sepsis.

There is no one answer.

I always have to laugh when I see things like a "40-60%" success rate. If we took a math test and got a 40-60% on it, we'd flunk. :ohmy: Why is that considered a "success" for a treatment? I think I'd at least like to see a "C" grade (70%) if someone were going to cut into me. But preferably, and A or a B grade. :lol:


p.s. Just agreeing with you weirdjack.

haisstt me too i wont from speenectomy

patti wrote: I always have to laugh when I see things like a "40-60%" success rate. If we took a math test and got a 40-60% on it, we'd flunk. :ohmy: Why is that considered a "success" for a treatment? I think I'd at least like to see a "C" grade (70%) if someone were going to cut into me. But preferably, and A or a B grade. :lol:


p.s. Just agreeing with you weirdjack.

I agree, I would want at least a 70% and above success rate before i was willing to do it

If it were really "about 10 years typically", I might be more inclined to get a splenectomy.
I keep reading (for those 40-60% of whom a splenectomy actually works) it may give '1 to 10 years' remission. Which means it could last 1 year, 2 years, 3 years...etc. In a 1-10 spread, 10 years is at the extreme end of the spread...it is not 'typical'. What I read here seems to match that as well.

It is wonderful for those 40-60% on whom it has worked though. Congrats!
Not quite as wonderful for the 60-40% for whom a splenectomy did little or nothing.

The only semi-guarantee with a splenectomy is that you won't have a spleen for ANY years afterward.

This paper, which Sandi pointed out a long time ago, gives the most detailed statistics:

bloodjournal.hematologylibrary.org/cgi/content/full/104/9/2623

Figure 'A' shows that at 160 months, the cumulative success is still about 60%.

Other papers show very similar results. About 20% of splenectomies fail nearly immediately,
another 10% or so last a year or two, and the rest tend to be quite long-lived.

Although a 60% won't get you a pass in school, we don't get so many good options in ITP.
It's way above average. We grade on a curve.

Ha ha I know it sounds ridiculous but the doctor at Stanford University hospital told me I was not allowed to get on an airplane unless my count was above 30k. I am not sure what he would have done if I would have anyway but I didn't want to find out lol.
Mendenmh, thanks for the post I agree that 40-60% success rate isn't a huge guarantee but it is a pretty good option for ITP and at least above average. I am very happy your splenectomy worked for you and I have my fingers crossed that it won't come back
I guess I have another question to anybody that has had a splenectomy have you noticed problems with immunity? Do you get sick more often? I have gotten all the vaccinations so I think that puts me at less risk. Anything you can tell me about what it's like not having a spleen would be helpful.
I met with my surgeon yesterday and he said that if a child comes in who has been in a car accident or something and has damaged the spleen he doesn't even consider trying to save it he will just remove it. This is because there is more of a chance something will go wrong with the surgery trying to save the spleen than problems with the child not having the spleen at all. This made me feel more confident about going forward with the splenectomy. Anybody have thoughts on this?

Thoughts? Since you asked, yes.

A person who has had a splenectomy generally doesn't get sick more often. It doesn't make you more susceptible to colds and such. But what it does do is make you very vulnerable to certain bacteria. The immunizations help, but do not provide total protection. An asplenic person who gets pneumonia can become septic very quickly, so any fevers should be treated right away. Sepsis is very serious and can be fatal. However, most people never have a problem; sepsis is rare.

I don't think you can compare a person who has had their spleen removed due to an accident to a person who has a splenectomy due to an autoimmune disorder. If the splenectomy doesn't work, people with ITP need to treat in other ways, and some of those treatments are immunosuppressants. It ends up leaving the patient doubly immunosuppressed.

There are other risks which have been recently discovered regarding splenectomies. I'll post some articles if you really want to know. It's not a decision to be made lightly, but if it's successful and all goes well, you may be able to say goodbye to ITP for a while (hopefully a long while).

No one seems to have mentioned WinRho. After a failed splenectomy, I was sorry I hadn't tried WinRho first as it has given some people remissions and it is rarely an option for a spleenless patient. I personally haven't had any problem with infections or anything else that I know of because of being without a spleen. ( I do respond to prednisone, even relatively small doses, and so far I've not suffered terrible side effects from prednisone.)

Also I've been on plenty of airline flights when my platelets have been below 30K. I've been just fine.

Sandi, could you put up those articles for me? I would really appreciate it

Here are a few to get you started.

There is a recently discovered link between splenectomy and thrombosis:


thorax.bmj.com/content/60/12/1031.abstract

bloodjournal.hematologylibrary.org/cgi/content/full/114/14/2861


INCREASED MICROPARTICLES LINKED TO THROMBOSIS

Researchers in Spain measured and tested the clotting potential of microparticles (very small bits cells) in the blood of people with ITP and found that the microparticles in these patients were more prone to form blood clots than the microparticles in the control population. This was also true of those ITP patients who had a splenectomy and were in remission. The clotting potential of microparticles may be helpful in preventing bleeding, but this condition may also make people with ITP more prone to heart attacks, strokes, and clots in their veins than might be expected.

#3707 “Increased Microparticle-Linked Procoagulant Activity In Patients with Primary Immune Thrombocytopenia”

www.pdsa.org/products-a-publications/e-news/2010-e-news/item/405-platelet-e-news-december-21-2010.html


Splenectomy and heart attacks:

www.sciencedaily.com/releases/2009/07/090730141557.htm