More than one spleen

My 30 year old son asked me 6 weeks ago what these strange red dots and bruises all over his body were. We went to the internet and saw some info about platelet disorders. He went to his oncologist (he is in remission from Hodgkins Lymphoma 3 years ago). His platelet count was at 7,000. They put him on predinsone and let him return to work. One week later, he started having serious nosebleeds, which he tried to hide by swallowing most of the blood. Eventually, after two donor platelet infusions, he was flown to UCSF Med Center. By now his count was at 2,000. They tried more platelets, IVIG, and his numbers would rise only minimally for a short time. After 2 weeks, he was allowed to go home. His children are 2 years, and a newborn. He began a 3-day nosebleed on a Thursday, and was much worse by Monday. At our local hospital he required 3 units of whole blood and platelets, and was re-admitted to UCSF the next morning. He was given boosters on his immunizations, many more platelets, and IVIG for 3 days. Then yesterday they removed his spleen, AND an auxiliary spleen that had grown next to it! Immediately after surgery his count was 58,000. By this morning, it was at 13,000 (which was more realistic according to his doctor), by this afternoon it was 15,000, and there was talk of letting him come home again. But by 4 pm, he was back to 7,000 and having nosebleeds. They have said they will keep him there until he shows prolonged improvement. My question is:(1) how common is it for a person to have more than one spleen? (2) We knew he would not maintain the 58,000 count, but why was it 13,000, then 15,000 , and then back to 7,000? Does this mean that NONE of these traditional treatments are working? Does it just take a long time for his platelets to level off at an acceptable level? We are scared to death of an intercranial or digestive tract bleed. Does anyone else have an experience like his? We are getting desperate for good news!

1) Having an accessory spleen is relatively common.

2) Counting platelets is not a precise science, if they clump the automated machines will miss-classify them as red blood cells, so 13K and 15K are not significantly different. A non-ITP person can have changes of as much as 30K in a single day.

3) How quickly you see responses after a spleenectomy depends on if his ITP is the result of platelet distruction or inadequate production. The immune system can do distruction in the spleen (most common), the liver and the lymph system. People report different results; some immediately see high counts at 500K or greater and then gradually coming back into normal range and others don't see much increase at all.

4) Since he has bleeding symptoms, intercranial or digestive tract bleeds can be a concern, but honestly the occurances are statistically low. Typically those who have them also have other complicating medical conditions. As you spend time with us on the boards, you'll meet people who routinely live with very low counts. Hopefully, one of them will be online soon and can offer some encouragement.

Thank you for your encouraging words and good information. Yes, since I posted my questions, others have told me having auxiliary spleens is possible. Since his surgery, his counts have been between 7000 and 17000, some days higher and some days lower. His ITP is the result of platelet destruction as bone marrow tests proved he is producing his own. I appreciate your response and look forward to hearing from you again and others.

my son had the operation on the end of april /10 his count jumped to 600k and dropped to 400k, and dropped to 35k , and came back up with no treatment to 600k again, and after one month it dropped to 2k again and i had to go the ER, and after ivig his count back up , but his doctor recommend retuxmab next attack , what is that mean , does he has a problem with distruction or production , no doctor explain to us why his surgery faild, but his doctor will do scane to find if he has another spleen , any answer could help me

Quite a few people also have production problems that do not show on BMB results.

And another reason the surgery can fail is that platelet destruction can also take place in the liver.
Erica

I will breifly tell you first half of my story.

at the age of 25 in 1994 I developed what I later learned as ITP and had an overgrown spleen. After 6 weeks of getting my platelets to 2 if was lucky they did a splenectomy. I was discharged and faithfully promised that it would never happen again and went on a camping holiday to Spain and recovered etc.

In 1997 those little red spots re-appeared. I was home from college as was doing a diploma and was a weekly residential student with home being in the same town. I'd forgotten all the instructions about going back to the city hospital especially as I was told it would never happen again. I gave my own A&E department quite a stir with low platelets and the first dr who took the general blood test just jabbed the needle in - it was a busy sunday evening with a wedding party in and I think he was feeling stretched and probably didn't understand why I was there(?). But up came a ugly lump which through out that week caused a stir with anyone who took blood from me - they were determined theirs' wouldn't leave a mark :-} but that is by and by.

Anyway in that week my local hospital gave me a theory that the spleen had regrown. All that week they tried to get me to transfer to the city hospital but I had discovered people were visiting me at the local and didn't want to go plus the haematologist who I saw was on holiday so they didn't push too hard. The local hospital theory proved right.

I believe if a tiny particle is left behind then it can grow - which is good news if it been removed because a fight or car accident. But not so good with us ITP patients.

My consultant apologised by the way about it never returning and became his 'favourite patient' for awhile because it hadn't happend in his care before I am given to understand.

So yes secondary or spleens regrown can happen and in England am told its something dr's read about in books but never actually meet anyone who its happend to - until they meet me:-}

Rhiannon
thank you for your reply,
did you do another surgery? and it did fix your problem with the itp again, or you have to be treated, if yes. i don't think this will be the case for my son , because he relaps after 3 month only, but i was wondring why it did faild while his jumped after surgery, any way DR is looking for accesories , i hope too much

Yes, they operated again and removed the second spleen.

Yes at least the platelets dropped from time to time and had a week of steroids and IVIG when necessary but have had an 8 year break and for some reason they dropped this year - but not low enough to require any treatment. They dropped to 10 and by the time I was retested that day they had risen to 37 which I am to understand anything over 30 is considered 'safe'.

I will add that I have idiopathic thrombocytopenia Purpula which essentially is the same as immune but the cause is unknown.

In more recent years I have had severe problems due to not having a spleen and I hope you will pass onto your son the importance of never assuming a dr knows he has had a splenectomy. And at the slightest hint of infection to go and see the doctor and if there is any time delay and he is shivering etc - get straight to A&E. I know things are different in USA - am English. But the advice like that is still the same.

I would much rather have ITP any day compared to Meningitis and the Meningitis was a practice of the horror that came with Septic Shock (stage worse than Septicemia). Am speaking plainly when I say I am very very lucky indeed to be sat here writting this. Septic Shock has affected my hearing and vertigo but that is so minor. Trust me - be thankful that he is only having to deal with low platelets at times. That really is easy compared to problems of not having a spleen may bring. Doctors do not educated us - and we learn sadly by experience and all I can do is urge you to make sure he treats colds and infections seriously now on. I am on life long penicillan because of the two severe illnesses.

Please see that low platelets really isn't that big a problem to what he could have had and yes it is serious left untreated and yes it could result in bleeding into the brain etc but he IS in the right place and has a Hemo that trusts? And like the other thread SPA treatment, try and see it as respite care from time to time.

hope this helps