To Splenectomy or not to splenectomy?

Hey guys,

So my Haematologist has once more broached the subject of a splenectomy with me. Ok so some medical info on me, I have ITP, Autoimmune neutropenia, autoimmune lymphocytopenia, autoimmune hepatitis, ulcerative colitis (sub total colectomy and right side ileostomy), i have slightly low haemoglobin and Hypersplenism.

So basically I am wondering what you think is the best idea take out the spleen or leave it in. I am not sure if there are any asplenic people here i would love to hear how post spleen life is as the info on overwhelming post spleenectomy infection has me terrorfied.

I know that taking out my spleen might solve alot of my immune issues but it could leave me with serious risks of infections.

So any advice or opinions would be appreciated

I'd keep the spleen unless leaving it is life threatening. I wouldn't want to be neutropenic, lymphopenic and asplenic all at the same time. I see you're CD4 lymphopenic, I'm CD8 lymphopenic. I wouldn't consider a splenectomy but I also have low IGs, have you had yours tested?

I agree with Ann. There is also a chance that having a splenectomy may not solve any of the autoimmune problems and in that case, you're left using treatments that can cause more immunosuppression. There are also studies that state that being asplenic can raise the risk of blood clots. Splenectomy is becoming more of an obsolete treatment as time goes by.

There are many people here who have had a splenectomy. Not as many as in years past, but you can do a search to read what their experiences were.

Not parting with my spleen

Ann wrote: I'd keep the spleen unless leaving it is life threatening. I wouldn't want to be neutropenic, lymphopenic and asplenic all at the same time. I see you're CD4 lymphopenic, I'm CD8 lymphopenic. I wouldn't consider a splenectomy but I also have low IGs, have you had yours tested?

My IG are normal, I am a big fan of having all my organs inside my body but I just came out from hospital having had a 4 week stay with sepsis. So i think the Infectious Disease consultant and the Heamo team at my hospital think that my spleen might not be doing its job and is in fact making things worst?

I don't know how the spleen can make things worse. That's an odd theory. People with normal spleens can get sepsis too. That's very scary. What happened that caused it?

So Mark, is your spleen enlarged? If so, that would add to the theory of hypersplenism, if not then they are just guessing. I don't envy you having to make this decision.

Sandi wrote: I don't know how the spleen can make things worse. That's an odd theory. People with normal spleens can get sepsis too. That's very scary. What happened that caused it?

The spleen destroys platelets, red cells and produces white cells. So they believe it is doing too much destruction and not enough production. My bone marrow shows that its doing everything it should. As for the sepsis they have no idea what the cause was as they hit me with Gent/Taz, Co-Amoxiclav and GCSF to fight it but abdo CT showed no signs of infection. Chest X-ray was clear and no obvious sign of infection else where. Both Aerobic and Anaerobic cultures came back negative (taken when fever of 39 C on three seperate occasions)

Ann wrote: So Mark, is your spleen enlarged? If so, that would add to the theory of hypersplenism, if not then they are just guessing. I don't envy you having to make this decision.

My spleen is 17.2cm and CT scan showed it was 'Bulky' (11cm is normal apparently) I have had three abdo CT so they have a clear idea on what it was before and it has got larger. My last 2 showed it enlarged and the first of those two was performed when i was healthy.

The only thing I can tell you for sure is that a bone marrow biopsy does not determine that the spleen is destroying platelets. Many doctors think that it will or will not show adequate platelet production, but it does not. White cells and red cells are produced in the bone marrow.

Sandi wrote: The only thing I can tell you for sure is that a bone marrow biopsy does not determine that the spleen is destroying platelets. Many doctors think that it will or will not show adequate platelet production, but it does not. White cells and red cells are produced in the bone marrow.

Are the Lymphoctyes not produced in the spleen? Anyway I think they think that it is destroying the platelets and red blood without functioning fully in its immune responsibilities.

Oh yeah they where also talking about Castleman's Disease but I am not sure i really hit many of the diagnostic criteria for it

No, lymphocytes are produced in the bone marrow. This is a kind of geeky video, but explains production and what they do.


www.youtube.com/watch?v=NZbkWQFQzvA

It's possible that the spleen is destroying your cells, but the liver can also be the site of platelet destruction and many people have production problems as well. That can not be determined by a bone marrow biopsy.

What treatments have you tried?

After thought: If the cells were produced in the spleen and you removed the spleen, you'd have no way to produce platelets, red cells or white cells.

Sandi wrote: After thought: If the cells were produced in the spleen and you removed the spleen, you'd have no way to produce platelets, red cells or white cells.

I never said red cells or platelets where made any where other than the marrow, I did say the Spleen destroyed them and it is my understanding that the Lymphocytes are matured in the spleen (and other Lymph nodes?) making them T and B cells?

I am on N-Plate for my ITP which keeps my counts between 100-200 after steriods, ivig and revolade didn't work. I am on 7.5mg for my AIH as well as td 500mg Ursodeoxycholic Acid. My AIN and Lymphocytopenia is not being treated persay but i am prophylactic Septrin 960mg mon, wed, fri.

My lymphoproliferation and nuetrophil and lymphocyte function tests came back normal.

They are testing me forr ESR,EBV, IL-6 level (castlemans diagnostic test) and redoing ANA anti-mitochondrial antibody and complement.

Also Its not the Platelets I am really worried about it is My WCC that is the main driving force here. I don't want to be in hospital everytime someone sneezes in a room near me. And Has anyone had any experience with Castlemans cause from what I read it can be a pretty bad thing.

I found that many sites on the internet simplify things far too much and end up being wrong. I don't mean Sandi's link, I haven't looked at it yet. I bought a haematology book when diagnosed with ITP which I dip into from time to time but it's all far too complicated to remember in detail.

From what I do remember white cells are made in the marrow with some going off to the thymus gland to be made into T cells which are CD4 and CD8s. The CD8s are Natural Killer cells and the ones that I lack (that's why I remember that). B cells go off from the marrow into the blood and to the spleen and the lymph nodes.

I looked up Castelemans not so long ago because I have an overgrowth of white cells in the lymph nodes, but it didn't fit for me. Among other things it is supposed to make the IGs high and mine are low. As you will have read, Castlemans can be not so bad or not so good depending on the sort.

Have you got antibiotics at home for emergencies? I have a stash of amoxycillin in addition to the Septrin I take every day. There's also the genome sequencing studies going on. Are your doctors taking part? My blood was sent off a year ago and still haven't heard back but still it might be useful eventually.

Ann wrote: I found that many sites on the internet simplify things far too much and end up being wrong. I don't mean Sandi's link, I haven't looked at it yet. I bought a haematology book when diagnosed with ITP which I dip into from time to time but it's all far too complicated to remember in detail.

From what I do remember white cells are made in the marrow with some going off to the thymus gland to be made into T cells which are CD4 and CD8s. The CD8s are Natural Killer cells and the ones that I lack (that's why I remember that). B cells go off from the marrow into the blood and to the spleen and the lymph nodes.

I looked up Castelemans not so long ago because I have an overgrowth of white cells in the lymph nodes, but it didn't fit for me. Among other things it is supposed to make the IGs high and mine are low. As you will have read, Castlemans can be not so bad or not so good depending on the sort.

Have you got antibiotics at home for emergencies? I have a stash of amoxycillin in addition to the Septrin I take every day. There's also the genome sequencing studies going on. Are your doctors taking part? My blood was sent off a year ago and still haven't heard back but still it might be useful eventually.

I don't have antibiotics beyond my septrin and I don't think my Dr's are in the genome sequencing study

Oh does anyone know if NHS Scotland has any hospitals that perform Indium Scans. I hear that Gartnavel (one of the bigger hospitals near me) has one but trying to get info is like trying to get blood from a stone. Thanks

Somebody on another forum has said they do them in Aberdeen. She says it's the only place in Scotland. Whether that's true or not I don't know.

That might actually be a good idea Mark, if it's feasible for you.

I'd definitely get an indium scan Mark if at all possible.

You might want to have a splenectomy if the spleen is enlarged anyway. You have more going on that just ITP so it may not be necessary.

True. The Indium wouldn't help the other problems. I think you need to do a lot of research to make a decision.

I am putting in alot of time researching just fished out a few Heamo textbooks I had from back in the day and ordered a few up to date ones. It doesn't really matter where they do the scan if I need to go to London I will because I am lucky and am Able to do that. Obviously I would prefer it to be near me but I can travel as far as needs must.

My thinking behind the indium scan is purely one of data, if it says the spleen is the main destruction centre then that would be a big pull to the splenectomy side.

I am on the side of Splenectomy at the moment but not with as comfortable confidence as my other medical choices have been so I would like to get some strong evidence one way or tuther.

Is there any other tests people think would be a good idea to get done that will give any indication if the spleen is destroying White Cells or PLatelets?

I had an indium scan in Aberdeen Royal Infirmary. You need to go in every day for about 5 days, can' t remember exactly. Don't know if it is the only place in Scotland or not, I' m just glad I live there. I have just looked up the internet and as well as Aberdeen Glasgow Royal Infirmary is a Centre of Clinical expertise for ITP and it also has a Dept of Nuclear Medecine which means it can probably do indium scans

I had my indium scan in Leicester. I went in one day for 6 hours and the following day for half an hour.

I went all the way from arizona to st barts in london.

Is there any tests that show where white cells are destroyed ?

Mark,

I have ITP, autoimmune neutropenia, persistent leukopenia (think that's right for low lymphocytes). I was diagnosed in 2012, like others had bone marrow, scans, biopsy of neck lymph nodes the lot. Suffered low counts on and off platlet and neutrophils on a roller coaster. Steroids etc . My original doctor wanted my spleen out, and after consulting with the great many wonderful people on this site, I got a second opinion with an ITP centre of excellence. He was / is against spleen removal for me. Each case is on its own merits and we are all different, but I think if I had not have asked here and took on board all the experience here, I thinki would have had mine removed. However, I am glad I didn't as one doctor told me there is no going back once it is gone it's gone. For me I was nervous because of my autoimmune neutropenia, at one point I hardly had any neutrophils in circulation and a dr, told me to stay off work as my risk of sepsis was too great, I was monitored and it recovered. I really wouldn't want to be in that position without my spleen if it is such an important part of my immune system. I decided if most medical advice was to remove, I would defo get the scan to be certain the destruction was taking place there. I am not sure of all your history, but for what it's worth, after all this for me after nearly four years my latest counts are nearly normal. I have tried desperately to understand what is going on in my blood ( even my GP calls me a medical mystery). But after riding it out, I have blood results I thought I could only dream of. They will probably dive again, but at the moment I hope that soon I will be free of this, at least for a bit.

I wish you well with your journey and the decisions that you make.

Did you have Hypersplenism because if my spleen was not 1.5 times the size it should be I would be very much on the no splenectomy side but simply because it is this large it is dangerous in its own right as it is more likely to rupture from trauma and all that fun stuff

My neutrophil count sits at 0.3 and white cell count is always sub 2.0

Mark:

If your doctor is recommending that you remove it due to size, that is definitely worth considering. That could be life-threatening. It depends on how large it actually is.

Mark

No my spleen was / is not enlarged, If it was that large I think I would have given it more consideration.