taking out spleen

my wife is down to this, did rituxian, promacta, ivig, nothing has worked to this point, get platelets twice a week can not do this forever. please give advice, give us some confidence, tell me all your experencies, how long in hospital to build up the platelets and the remove spleen. would like all advice and feed back. we are scared and nervous what is sucess rate, side effects, any thing you all can tell us. we will celebrate if this works and platelets go over 50, 000, and more all the time

There are numerous members here who have had sustained remissions from splenectomy. One problem is that sometimes people drop off the board if they are ok for a year or more. I think you'll hear some good stories though. You can also search the boards, we've had a few threads with splenectomy stories.

What is going on with your wife, how are her counts doing? I looked back and I saw she was varying between 3000 and 70000? Has she had any bleeding or other symptoms? Is that why they give her platelets, because it is an unusual treatment.

Best wishes and platelets,
Erica

What are her counts? What are her symptoms? Looking back through your posts, I can't see that she has tried prednisone though usually that is the first treatment offered. Has that failed for her too? Has she tried WinRho? There are other treatments too though I have not tried the others. Have you looked at the treatment section of this site?

The statistics I heard when I had my splenectomy in 2004 were about 2/3 of patients have at least a temporary remission--but later I found that was for patients under 40. My remission lasted only a few months. I was sorry I hadn't tried WinRho before I had my splenectomy as WinRho is seldom successful after that surgery.

A laproscopic splenectomy isn't usually all that difficult. I was put on high doses of prednisone for 5 days before and then blasted with steroids in the hospital. I was hospitalized the night before the surgery, released the day after the surgery. Recovery was swift, and I was 63. Although splenectomized patients are more vulnerable to infection, I have been careful and have not noticed any problems (yet!).

thank you , yes she started on prednisone, did not help, and bad reactions, was only high a few times, one or two times 70, or 80 thousand, then dropped, half or more in two days, never discussed winrho. not much bleeding, when real low somtimes mouth sores. she gets platelets twice a week, was getting ivig, did not seem to help, very depressing. very fatiqued, most of time. we r at hospital 4 days a week, real tough.

Is there a reason she can't try living with low counts and keep her spleen for a while? It doesn't sound like she is having serious symptoms from what you are describing. Have you considered getting a second opinion?
Erica

I had my spleen out a bit more than 4 years ago. I had been diagnosed for about 6 months,
initially with a near-zero platelet count, and bruising, bleeding sores, bleed gums, bleeding nose, etc.

I had steroids & IVIG at the beginning, with a very short, but strong, transient response
(count went up to 400k or so), then the expected drop back. I did three rounds of WinRho,
which gave moderate (150k) short-term (one month) bumps. AT that point, I was getting
sick of messing around, and wanted to try to roll the dice for a bigger result.

I went for a splenectomy, and had very good success with it. So far, my platelets have
been completely normal, and I have had no excess rate of infections for complications. I
posted a long analysis here:

www.pdsa.org/forum/6-general-itp-discussion/14089-re-splenectomy.html#14089

with a cost-effectiveness calculation for this. I know it sounds cold to figure out medical care from
this direction, but every treatment we take (or don't) is a gamble one way or the other,
so I try to take it from the best basis I can.

I hope you best of luck with whatever you choose to try. If you search for 'splenectomy' using
the search tab at the top right of your page, you will see a lot of discussion, both from
people like me for whom it worked out well (who tend to disappear from the group),
and from people who did suffer complications or just got no response.

acutally the reason for getting platelets is to keep out of the er, if to low will have problems, getting platelets keeps a somewhat safe level, , did i say she has diabetes also, does not help situation. it is almost a year, it would b to late for second opionion, plus philly is an hour away

musicguy,
I don't understand why a year is too late for a second opinion, I think a second opinion would be great.
Erica

It really is not normal to have platelets given for ITP. In fact it goes against all the protocols. A second opinion with someone who is experienced with treating ITP is a good idea.

I'm only on the boards occasinally now since I was one of the ones that a splenectomy worked on. I had tried steroids, IVIG, and Rituxan with varying degrees of success before deciding to try a splenectomy. I was glad that I tried other options first, but am so glad I finally got my spleen removed as I've had 8 months of counts in the 400,000's. The surgery itself wasn't much fun, I don't react well to the anesisia (and never have) and was in some pain after, but I was back at work 2 weeks later and now don't have to worry about spending 1/2 my life in the doctors office. My platelets took a few days to climb, I think I was at 80,000 2 days after surgery then 3 weeks later I was at 400,000 and have seemed to stay there. My doctor talked to be about the possibility of a relapse, but honestly even if this only works for a year it has been worth it. I don't worry when I'm out rock climbing anymore, I don't get random brusies with no cause. It's really been wonderful. Like I said, I waited 2 + years before splenectomy and am glad I waited, but also glad I finally got it done.

You ask some good but difficult questions Mr. Musicguy60 I'm one of those whose spleenectomy would probably be considered successful (I was 49 at the time). But success wasn't permanent. Within a few weeks post surgery I settled around 350/400 and stayed there for almost 10y before my counts dropped to 10. Those were a great 10y of minimal concern and good health - just periodic CBC's. One warning about a splenectomy is higher susceptibility to pneumonia and other infections. When the splenectomy is planned you'll receive three inoculations to provide future protection. I didn't experience any infection issues during that 10y but had a very serious bout of pneumonia during my 2nd ITP crash. So heed those warnings and monitor any fever and follow the MD advise to react QUICKLY to a fever - it's not something to try and tough it out!

Accepting a splenectomy is usually a passionate debate on this board and it's a very personal decision. The success rate is unpredictable, its longevity is unpredictable - thus the passion on both sides and there are risks of living without your spleen - manageable risk in my opinion but risk none the less. I firmly believe only the patient can make that decision considering all the facts and personal circumstances - but most agree don't rush into it without open eyes and serious discussion and contemplation - it obviously can't be undone.

You haven't provided enough info to know if all routine treatment protocols have been attempted? Nor have you indicated the health condition of your spouse. Many people, several on this site, live quite well with low platelets, it can be monitored but that's also a highly personal decision!

All I can ask is to consider all the facts, treatments, risks and personal needs and make an informed decision - and don't look back on that decision later - it'll be the best decision for you if you've thoughtfully considered the factors.

Ask lots of questions regarding anything from Diagnosis to treatments to fears & anxieties. Know we'll answer as openly and knowledgeably as we can from our varied experiences, all with the goal of educating you so you can make as an informed decision possible.

Oops, and one last answer to how long to be hospitalized for a platelet infusion before surgery. I can only say my platelet infusion was as an outpatient and was 3-4 days before the planned surgery since such infusions typically last less than two weeks.

In response to BarrelGal's experience-- If one has a skilled enough surgeon, a laproscopic splenectomy shouldn't be terribly hard on the patient. If the spleen is too enlarged to do the surgery laproscopically, however, the surgery is much more difficult and requires a much longer recovery period. Like BarrelGal, I get sick from anesthetics--and morphine and codeine and almost all painkillers. For my laproscopic splenectomy, my surgeon used an epidural, then shot some pain meds into the epidural spot after the surgery--and as a result, I didn't get sick. I had two periods of discomfort--before the surgery, the radiologist "killed" my spleen so it could be removed, and I got increasingly uncomfortable until they sedated me and gave me the epidural. After the surgery, they couldn't remove all the carbon dioxide which they pumped into me for the laproscopic surgery, and it rose when I sat up--so I had very sore shoulders for a while. I was also warned that I wouldn't want to wear anything on my waist for a while, so I bought a pair of overalls. The day after the surgery, I returned home and rested--and I think I lazed around the next day too--but by the following day, I was feeling pretty normal.

This is not to say I recommend splenectomy. Remember, mine didn't work. Again, I wish I had tried WinRho first. I wish I had waited longer before I had the surgery.

thank you, she has had promacta, rituxian, predisone, ivig and none of these worked, plus she is diabetic, does not help matters, really nervouus about spleen, do no there is some good sucess rate. she is fatiqued a lot, thanks for input. has to get platelets twice a week so she won.t crash by weekend and get to low of a platelet count

KarenR had a good point about WinRho. This is one of the treatments that is not 'reccommended' on splenectomized patients so if she is able to try that first I would. I was not able to try WinRho because I am Rho(D)-negative, otherwise it is one I would have tried before making the decision to remove my spleen.

Hi
I have had my spleen removed back in 1994 (England). It was the first time I ever had ITP and didn't know anything what so ever. I kept being told low numbers like 2 or as low as 1 if I was lucky. It didn't mean anything in those days. I was an inpatient for 6 weeks and nothing seem to work. I haven't a clue what they tried as it was all like a foreign language then. They sent me home for the weekend and went to a different ward to have my spleen removed. All I really remember is it was very large and yes I had very low platelets for the op - lower than they liked I think but I was safe from worry because it meant so little to me.

My platelets went back up and heamo promised me it wouldn't happen again and I totally trusted him. 18 month later the familiar spots and long and the short is that my spleen had regrown (it had been very overlarge) and had that removed and platelets went back up.

Ever since I have had episodes of low drops and been given prednisolone and IVIG and that did the job and lasted for around 18 month to 2 years varying. Sometimes 4 or even 5 years without anything.

That consultant retired and now onto my second consultant who has his own ideas and believed my platelets responded to prednisolone alone. They do but once stopped they dropped again. I have been having few issues this year and in may they finally gave me the ivig. but not with the prednisolone so the following week back down to 5. Am now on prednisolone and rituximab as a day patient and last week count was up to whopping 349 which is record for me this year. I need something with the prednisolone though because as soon as that is right low my platelets dropped. so here is hoping that the rituximab along with the prednisolone does it job though am still fairly convinced that if they had done the IVIG at the same time as 60mg prednisolone it would have worked as usual. But didn't mind exploring a new treatment though am wary of rituimab because one risk of not having a spleen is infection.

My own experience of splenectomy has been one very tough lesson. I tend to trust every doc going in the past and didn't get myself properly educated about life without a spleen. Consequently I contracted meningitis and then later septic shock. I hadn't informed new doctors when I changed family practice. I had told the nurse and though it would go on file and that be enough. But it wasn't and so my GP couldn't treat me properly because I wasn't giving him the right information. I learned the very hard way and hope that you and your wife will be given all the right information about infections etc. I am now taking penicillin everyday and do a fairly good job at minimising infection with the only occaisional doc misunderstand what am saying so go straight to A&E if that happens to get the right treatment. I have changed practice again though and these are better at listening to the patient.

I hope I haven't scared you because lots of people seem not to have any problems. I may or may not have contracted meningitis anyway as I have another theory why I was ill at that point. But it did provide a learning curve albeit a very deep learning curve about looking after onself. I had survived all by the grace of God. And here to tell the tale of making sure one gets full information.

I was told I couldn't travel to anywhere that has malaria. I may be ok on the treatments but if something did go wrong then it couldn't be dealt with. That was back in 1994 and don't know if the advice is still the same.

I was allowed home 10 days after the op and yes it took me a while to recover and slept through spain when we went camping 6 weeks later. It was already all booked.

If you want any futher help etc please post and I will try and answer though I can only answer from my own expeiences. Though others hopefully will answer too and between us you have more insight.

when is the op going to happen
Wish you the best and I really hope I haven't scared you with my story. As we are all unique and have different experiences.