Need some advice

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Offline Andy Battaglia

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Re: Need some advice
« Reply #15 on: July 27, 2006, 09:21:06 AM »
I just came across this article and it can only add to the debate about splenectomy. This is a difficult choice, as we have heard from many patients who were helped by splenectomy. However, recent research indicates that splenectomy can lead to other problems.

http://www.emedicine.com/ped/topic2232.htm

Quote
Splenectomy is frequently recommended for patients who are no longer able to maintain an adequate Hb level. It is usually performed to restore the Hb steady state in patients who are not receiving blood transfusions and frequently succeeds in averting the need for regular transfusions.
Recent observations and case reports have shown that splenectomy in such patients may cause serious venous thrombotic events ranging from deep vein thrombosis to pulmonary thrombotic lesions complicated by pulmonary hypertension. For this reason, one should delay or reconsider such a procedure whenever possible. In support of such a recommendation is the fact that many children who underwent splenectomy to avoid becoming transfusion dependent have only a transient effect and the need for regular transfusions later was the rule in most of them.

Surgery is always a final option and all facts should be weighed before proceeding.
Andy

All we are saying is give thals a chance.

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Offline §ãJ¡Ð ساجد

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Re: Need some advice
« Reply #16 on: July 27, 2006, 09:37:25 AM »
Andy you are absolutely right!

God has put that organ there as it does some good things in the first place.

Removing it should be the last option!

I was advised to remove it during my platelet episode but gave it one more chance. They gave me hyper transfusions of platelets and Vitamin K shots. Thus after that it started working and I am still hanging on to it.
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Offline Poirot

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Re: Need some advice
« Reply #17 on: July 27, 2006, 09:57:02 AM »
I just came across this article and it can only add to the debate about splenectomy. This is a difficult choice, as we have heard from many patients who were helped by splenectomy. However, recent research indicates that splenectomy can lead to other problems.

http://www.emedicine.com/ped/topic2232.htm

Surgery is always a final option and all facts should be weighed before proceeding.



Hey Andy,

Thanks for that quote ...... doctors are sounding more like lawyers now. On one hand, OTOH, OTTH ..... ha!

The truth of the matter is that there is risk in everything we do .... we could be killed causing the street, for heaven's sake, by a drunk driver. The anecdotal evidence is that an overly large majority of intermedia thals (and E-thals)  have benefitted from taking out the spleen at an early age ....... and you can find plenty of them in this group itself. And, calling the effects transient is really laughable in the  case of intermedias ..... i think 20-30 years is a hell of a transient period, to avoid transfusions and iron chelation. Hey doc, I will take that anytime!!! We have to remember that thals are too small a group to be statistically significant in most cases, so medical opinion is just that.  Hence, I would take thal anecdotal evidence over medical opinion anyday!

And, this is the first time that I have heard of  splenectomies causing DVT (note all the lawlery language around this assertion!) .... Also, I notice that the study does not quote any standard medical trial, just some 'case reports'?

BTW, in many cases, you can take out the spleen these days by laparoscopy, instead of open surgery.

Anyways, my two cents there.

Poirot
« Last Edit: July 27, 2006, 10:00:49 AM by Poirot »

Re: Need some advice
« Reply #18 on: July 27, 2006, 06:02:36 PM »
Hi
As far as my knowledge and experience goes, splenectomy has helped a whole lot of E thals  and I agree with Piorot.
When my daughter was young (  she is now transfusion dependent E-Thal), she did not need blood till she was 4 years of age. Then Dr. Bernedette Model  ( UK) had advised me to take out her spleen.. maybe if I had done that, we could have avoided transfusions, or maybe we could have deferred the transfusion regime.
Spleen really does very little in an adult. And now there are such good life time vaccines available. And the surgery is very very simple.
My daighter had her spleen removed at age 21 and then it was a major surgery. Now it is no longer a major surgery. My daughter does not even take  penicillin . She has had the Puemovax vaccine and so far she is just fine. She is 29 years.
Spelectomy will definetly postpone her transfusion if at all.

Shikha

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Offline Andy Battaglia

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Re: Need some advice
« Reply #19 on: July 28, 2006, 03:52:47 AM »
As I said, this article will add to the debate about splenectomy. Many people swear by it and others question if it was indeed a help. In Lisa's case it meant every cold and infection had to be carefully watched, as they often became serious life-threatening infections. A simple cold often landed her in the emergency room with raging fevers. The spleen is a huge part of the body's immune system and without it, much care needs to be taken.

Whether it provides some relief from transfusion dependency seems to vary from case to case. Some seem to not even get any temporary relief as far as frequency of transfusion and others find substantial relief. I would not just write off this article because these findings haven't been observed before. If these findings are further corroborated, it will make a serious argument against splenectomy, just as the arguments in favor of instant tonsillectomies vanished over the years (much too late to save my tonsils).

As I said, surgery should always be a last resort. You can't go back once you do it. As was Sajid's experience, the problem was corrected over time, without splenectomy. In some cases there may be no choice as a ruptured spleen can create all sorts of new problems, including death.

As I requested long ago in our MSN group, I would like to have everyone share their spleen stories with us. It is a very difficult decision to make to have a splenectomy and those considering it can greatly benefit from your experience. We can look at study after study, but personal experience often can outweigh those when one has to make that decision. So, everyone, please share your experiences.

Thank you.
Andy

All we are saying is give thals a chance.

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Offline Hallu

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Re: Need some advice
« Reply #20 on: July 28, 2006, 06:32:09 PM »
I completely agree with Andy as splenectomy is indeed a very sensitive and difficult subject. My observation is earlier doctors used to recommend splenectomy more liberally as compared to today. These days they recommend to keep the spleen as long as possible as it's a well established fact now that spleen plays a very important role in immune system.
There are vaccines available for only few known bacterial infections but then there are many other bacterial infections which are not even known yet and a splenectomised person can be in trouble if infected with them.
However, in case of hypersplenism, benefits of splenectomy outweighs the risks associated with it. Unfortunately there's no direct test which can prove hypersplenism state... it's always a best guess.


--Hallu





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Kathy11

Re: Need some advice
« Reply #21 on: July 29, 2006, 01:06:09 AM »
Hi Jemma,
Living in LA LA land is not so bad because it kept us out of the looney bins(LOL) :rotfl :rotfl :rotfl :rotfl
DO not get mad with us that is because we all have different point of view on the same subject,
I'm positive that we all have your best interest at heart and we wish you the best .You are welcome to express your concern and worries ,on the other hand you need to appreciate others , honesty.
life is a roller coaster and we are all trying our best to survive with minimum difficulty as posible,learn to digest every word with a pinch of salt or sugar  :wink,
Take care there is an answer somewhere, good luck .
regards Kathy.

 

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