Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: sahil on October 14, 2008, 04:04:11 AM
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Guys whats your opinion on splenectomy?
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I don't think splenectomy is advisable in many cases. At one time it was a standard practice in thalassemia intermedia, but that thinking is being revised, since long term studies have showed that splenectomy patients have a higher risk of clotting issues and stroke, as the years pass. Now, it is becoming less used and mostly only in cases of vast enlargement or high hemolysis. Even then, doctors are becoming more reluctant to remove the spleen. Its value in thal major is even more limited. I think if at all possible, the spleen should not be removed but sometimes there is no choice.
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hi Sahil ,
i m first voter ....
hahhahha ...
i dont agree with l both options ...
spleen is a key factor , it shouldn't be removed untill it started wo over react/working ...
well i voted for ... When spleen gets enlarged but i would like to go with Andy ..
it should be the last choice ,,, not the first step... you should have to study and think alot before spleenectomy ...
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Hi! I totally agree with Andy and to nice friend. But if worst comes to worst one should have remove it or risk of having complications of having large spleen..... :wah :wink
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Hi to all,
hw ru?
I'm also agree with u Andy & Lyanne.
my doctor suggested me to remove my spleen, B'coz my hb lvl goes very down in 15 days.
it remains around 7 to 8 mostly.. and sometimes 6.5.
so my doc. wants to remove my spleen
but I dont want. and m not going to remove it..
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Well I had no choice in removing my spleen, 34yrs ago...My spleen was so enlarged that it was making my life a living hell...
I was like those little ethiopian children ( not being rude or anything ) with an enlarged stomach and so my spleen had to be removed otherwise it would have cost me my life..
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hello Smurfette,
dont worry
If we have no choice,what can we do..
Health is must.
take care of ur health
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There are 2 schools of thought for spleenectomy:
1. Remove it so that a child who is maintaining his hb at 5-6 goes to abt 8, this is common in intermedias. This enables them to avoid transfusions.
2. The second one which was discussed in S'pore conference was that there is no point removing it and the side effects are too much in terms of infections in terms of thromorbosis. So the conclusion was it is not beneficial removing the spleen even in intermedias, but then again it is finally upto the individual's doctor's prerogative cos clinical assessment is needed.
The argument goes on.
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Hi guys
My opinion is of the.... if it needs to go then it should go.
When I was small it was decided that my spleen should be removed to help me last longer with the need of a transfusion. My spleen however was ready to burst so it was taken out when I was 7yrs.
I admit that it is so easy to catch things but it helped me to hang around in this life and for that I am grateful.
We don't always have a choice and with new technology always advancing, you can never quite tell what technique shouldn't be done til after it is done.
Either way Im happy and moving forward without an enlarged spleen.
Take care guys
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Though i am not expierenced with splenctomy but my opinion that we have no choice in this matter as there will come a time that you are not able to say no if the enlargement is too much that it can be dangerous.
I think we should work more on preventing this from happening either by transfusions or medications that induces the fetal Hb ( whether natural or chemical )
manal
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Hi Guys
I forgot to mention one thing which I was warned about when Prat was a baby. To always watch if there is any blood in the stool or the stool is black cos if the spleen bursts it can be very dangerous.
Also the Dr's had said with an enlarged spleen another danger is if they are in school and fall on their stomach it can burst, therefore we have to be careful. With Prat when we took out the spleen it was only 3 cms's enlarged but I have heard cases when spleen is enlarged upto 5-6 cms or when the kid eats the spleen gets enlarged just after eating, so please keep an eye on the spleen.
As for spleen protecting the body against infections is also not entirely true cos Prat was down with a lot of viral infecftions for last 18 months on a continuous basis. So again this is subjective.
However there is a new topic which Narendra had posted abt spleen which has to be studied as well.
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Mine was removed when i was not yet 4 and it was enlarged.... You know, i still hopes it grow back. transfusion went from 6, to 4, to 2 and to 3weeks in the years... :wink
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mine spleen is also removed , i was 15 years old when i had splenectomy , spleen was too large at that moment , after spleenectomy gap , between Tx were increased but its was for a realy short time period ( less than 1 year ) , now its 7th year of spleenectomy & i need transfusion after 2 weeks ....
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Hi! mine was removed when i was 16 years old and had to take antibiotic for a year and my transfusion become less frequent until I stopped having at all......... :wink
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Hi Lyanne ,
Hi! mine was removed when i was 16 years old and had to take antibiotic for a year
Are you talking about PenidureLa ( Pencilin ) ??.. that is realy hard injection ... i were on that for a f2 years after that my doc prescripted me Pencilin tablets ... after few months of that Tabs she stopped those tabs ..
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Hi! Umair, nope just oral penicillin....... My pedia then suggested that I should take it once a day for a year....... thankfully it work coz i never gotten any serious illness........
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Hi Lyanne ,
You're realy lucky becoze you never experienced that injection , hhahhaha that was superb painfull ... wissh you stay lucky on all fronts of thalassemia's and others .... :thumbsup
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Hi! umair thanx for the good wishes! :hugfriend I sincerely hope one day all of us will be cured somehow of our dilemma ( having this disorder) :grin Complications of this disorder is really the biggest :banghead problem.......
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Hey Lyanne ,
i m happy with this diseas uptill cure come :wink (its nothing bad uptill :wink) heheheh...
dont beat your head on wall doing this will hurt wall hehehe... :grin about complications life is full of complicatio for every living person its nothing new happenning with us ... about disorder, i think the people yu said are normal they have a disorder in their lives as they have no time to meet their friends after every 14 days like we have to go to meet our friends at thal center hahhahaha :grin soo they are facing disorder in their lroutine life ... soo wat do you think ???... Thalassemia is good for me uptill cure come .. when its cure will come it will turn to in my bad List ( things i dont like) and i will try to be cured .... but uptill to only that time , when i have to face it then its good ...
Umair
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LOL! I'm also satisfied if not happy with thalassemia...... at least God given me something that can be manage as compared to with out a cure ( and wait until my time is up!) :scared. And yeah things will be better soon I guess.... I mean with the technology and everything... I totally :agree with you on that life can be so boring without once in a while "so called complications" in life. :grin
I think I also got the hang of it so I agree with you on that!! :biggrin
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Hi,
I have had only 3 vaccins after slenectomy. A friend of my (with pk-deficiency) had her splenectomy 4 years ago (at the end it didn't help) and she is still taking antibiotics. Yes, we all have a completely different treatment :( :huh
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Hi there,
New here and was just searching in the different threads and thought I'd read this thread as I had a Splenectomy when I was 6 years old because my spleen was enlarged. Interesting to read all your comments, because since having the splenectomy, I've always had to take oral penicillin daily, and will do forever, unlike some of you here that I read only took it for a year following the operation.
PJ
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Lyanne,
Interesting that your doctor asked you to take penicillin only for one year ..... my doctor told me that I will have to take it lifelong to ensure basic immunity and thwart infections. And, this was over 20 years back.
Have to thank him for the good advice - Penicillin 400mg daily has probably helped me fight off most infections over the past two decades.
That, and my wife's TLC!!!
Cheers
Hi! Umair, nope just oral penicillin....... My pedia then suggested that I should take it once a day for a year....... thankfully it work coz i never gotten any serious illness........
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Q: why does the spleen enlarged?
I hope it's allowed to ask this Q in this topic.
Merci beaucoup
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Dore ,
Questions are always welcomed :hugfriend
From http://www.thalassemiapatientsandfriends.com/index.php?topic=1910.0
Splenomegaly (enlarged spleen) is common in thalassemia major and intermedia due to the high rate of hemolysis (red blood cell destruction). This takes place because the spleen sees the defective red cells of the thalassemic as deficient and the transfused red cells as invaders (much the same as with host vs graft disease) and removes them from circulation. One should note that although natural made normal red cells live for about 120 days, transfused cells last a matter of weeks, at the most. Antibody reactions can also exacerbate this problem. This hyperactivity of the spleen results in splenomegaly due to the amount of blood cells that are filtered out and also by a physical increase in size of the spleen so it can handle what it sees as a heavy load of blood cells that need to be filtered out
Hope it helps.
Zaini.
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yes, it helps. First time I read this in English.
The iron issue has no influence in this process?
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Iron does have an effect on the weight of the spleen, but it's major effect concerning the spleen is the overall weakening of the immune system which can cause hemolysis and an enlarged spleen. Hemolsysis releases even more iron into the body adding to the vicious cycle. As with all organs, function is diminished by iron overload.
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Hi! Poirot..... it was just for therapeutic and afterall I believe you will have some kind of immuninity
on the antibiotic if used or taken regularly don't you think so? I mean the next time you take the same medicine it won't do the thing it is supposed to do??? :hugfriend
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hello,
can someone give me some information on what the pros and cons are to have a splenectomy please !!!!
my doctors want me to have one im am 22 year old female , living in Australia , with CDA . unknown type.
my HB is usually around 6-7 after my blood transfusion ( every 3 weeks) since born it goes to about 8-9
i have cardiac failure , liver failure, kidney failure, no gallbladder, no appendix , osteoporosis, etc
just wondering is it worth it ?
thankyou
lillie
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Rouge, can you have a surgery with failure iin the heart and liver, is this safe? Going throught anathtesia (spelling..) has to have a kind of criteria, what does the doctor say about this??
manal
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hello Manai,
thankyou for your question ,
they doctors are unsure whether i can have the operation or not, probably not.
However , they want to decrease my chance of iron overload (from happening again )
and to decrease the transfusions from every three weeks to perhaps every 4 or 5 weeks
and to increase my HB
Do you think if the spleen is taken out these above things will happen ?
any information you have on this matter would be much appreciated
thankyou
lillie
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Hi Lillie,
To my understanding,some patients do observe increase in transfusion intervals after splenectomy,even some can get transfusion free,like our member Lyanne is,but same can not be said for everyone,every person's body works in different way,so it's not confirmed how your body will react to splenectomy.
One more thing i've learnt from the forum is that having splenectomy can increase your chances of getting infections,you'll have to be on antibiotics.
Good luck.
Zaini.
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Hi Lillie
I have learnt in the Singapore conference that splenctomy is not advised as long as you can live with your spleen and it does not threaten your life like becoming very big in size.
But as Zaini said, taking the spleen could result in increasing the intervals between transfusions, but in the majority of cases the usual frequency before splenectomy is back.
Also taking the spleen off increases chances of infections and thrombosis.
I guess that in your case, keeping the spleen out weighs taking it off, first because the surgery might be dangerous ( since the doctors couldn't decide till now and of course they are the only ones who have a say on this). Second because the target is to decrease the iron overload and i guess that you can achieve this by having compliance to chelation ( if your are not dedicated to chelation in the first place, you will get iron overload even if you removed the spleen), third, decreasing the transfusion rate is not guranteed
Lillie, i am sure you understand that this is not a not a medical advice, but is just my opinion
hope it helps
manal
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We have to remember that we are talking about Congenital dyserythropoietic anaemia and not thalassemia. Treatment protocols cannot be assumed to be identical with thalassemia treatment. This is a very rare condition and due to the small amount of patients, treatment protocols have not been as well developed as with thal. However, splenectomy is often used as part of the treatment. A study in 2006 found the following in relation to CDA I
http://bloodjournal.hematologylibrary.org/cgi/content/full/107/1/334
Splenectomy was performed on 7 patients ranging in age from 9 to 28 years. Data before and after splenectomy are available in 6 of those patients. Transient increase of hemoglobin concentration was seen in 2 cases, but was not different before and after splenectomy for the group as a whole (Wilcoxon signed rank test, P = .44). Improvement of quality of life was not documented. The sister of one patient (case not included in this series) died one month after splenectomy of "hemolytic anemia." All splenectomized patients had long-standing thrombocytosis with maximum levels between 450 and 830 x 109 cells/L (median, 780 x 109 cells/L). Two had splanchnic or major deep venous thrombosis. Further increase of ferritin after splenectomy was documented in 4 of the splenectomized cases and all had to be treated with deferoxamine...
In contrast to CDA II, splenectomy is not recommended as a standard procedure even in patients with marked anemia, although in exceptionally severe cases it may lessen the need for transfusions.39 Our observations are consistent with the only report describing long-term follow-up in one patient.32 As in CDA II,33 splenectomy does not prevent further iron overloading. Interferon-alpha was effective in 5 of our patients and in all cases reported.5 According to a recently published follow-up of the first patient treated with interferon {alpha}-2a,40 this treatment, beyond normalizing the hemoglobin concentration, seems also to normalize the up-regulated enteral iron uptake, responsible for the iron overloading in CDA as well as in other states with chronic ineffective erythropoiesis.41
In CDA II splenectomy does appear to have some benefit.
http://www.enerca.org/Portals/0/pdfs/Newsletter_June_2007.pdf
In CDA II, splenectomy leads to a moderate and sustained increase in hemoglobin concentration and decrease of serum bilirubin levels, as shown in 48 patients from the two registries [5; 11] and in 41 patients published as case reports. If measured, shortened red cell survival normalizes [1], demonstrating that, as in hereditary spherocytosis, abnormal CDA II erythrocytes may survive normally in an asplenic individual. No overwhelming bacterial infections were observed after splenectomy.
Even with thalassemia, splenectomy is not as widely accepted as previously and is mostly recommended in cases of hemolysis or gross enlargement. Splenectomy as a therapy for thalassemia is basically a shot in the dark. Sometimes it helps to reduce transfusion frequency and sometimes it doesn't. Removal of the spleen has a detrimental effect on the immune system, so it should be carefully considered before choosing it as a strategy. The type of CDA is important here and since we are dealing with a variant, it is probably not going to be within our expertise to make any recommendation.
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Hi, my name is Vidi from Indonesia, I have a 5,5 years daughter who diagnosed with betha HbE thalassemia when she was 10 months old. In the first year,she gets blood tranfusion every 3 months, and now every 3 weeks. I want to know what kind of thalassemia than my daughter have?? Is it intermedia or major??
My daughter,ayudia, also have a very big spleen (S VIII), her doctors says that she need to have splenectomy. Is anybody can help me give the name of the doctors and the hospital in Malaysia or Singapore that have a experiance to this procedures?? Because I can not found one in Indonesia..
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Hi Vidi ,
:welcome to the Family , i hope you willl find the answer of your question realy soon , i cant say anything bcoze i m not an expert over it , i hope that, Admin of this site and some senior members will reply to your question with helpful information ... please keep in-touch and you will get your information related to your concerns very soon ... keep posting bcoze its very nice to have you here ... Wish you, your family and especialy to your daughter all the best of luck ...
Best REgards
Take Care
Umair
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Hi Vidi,
Your daughter is HbE beta thal. The condition varies from intermedia to major depending on transfusion needs. Your daughter's is like thal major.
We have some listings for Singapore care in out treatment centers section. http://www.thalassemiapatientsandfriends.com/index.php?topic=65.0
Please get an opinion from one of those hospitals before deciding on splenectomy.
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Vidi,
HB ß E Thalassaemia varies widely and needs to be treated as per its clinical presentation - it can go from moderate anemia to transfusion dependent anemia (similar to ß major).
Since your daughter is only 5.5 years, and is on a 3-week transfusion schedule, I would agree with Andy that your daughter is more likely the latter.
However, again since she is only 5.5 years age, please ask the doctor whether there is a likelihood that a splenectomy could remove the transfusion dependency. Do keep in mind, though, that there are no guarantees on this - the doctors can only give you a likely outcome.
Poirot