Question for all of you

I sometimes point out the potential risks associated with splenectomy. I'd like to take a poll. Who would want to know prior to the surgery and who would not want to know? If so, why and if not, why?

I would want to know the risk and the effect that it would have on the rest of my life, I would what to know because I had my thyroid removed and one of the biggest problems I have is getting thyroid medication right and I was told that this would be easy to do, not quiet so simple as I was told.
I would want to know the absolute worst thing that could happen, but that's just me, expect the worst and be happy if it doesn't happen!

I would definatly want to know the risks that could affect me for the rest of my life!!! Knowing the possible risks of this proceedure is why I refused when it was brought up.

When my daughter had ITP, we were repeatedly pressured about how her only option was a splenectomy, as she didn't respond to any treatments. If we HAD chosen to go that route, I would definitely want to .know.

If someone is about to slice me open to remove an organ....yes, I'd want to know all the facts first.


.

As you know my son has been very low for over a year, pred IVIG nor winrho did anything, within the first 3 weeks they were talking about taking his spleen (at that time they were saying next thing)!! I was on THIS SITE and had read that it did not always work, if it did at some point it may stop. I was back in the hospital with my 18 month old ( I usually say OK to anything a dr says) but the spleen was brought up again..I was so full of questions and even informed them it MAY NOT work, he is so young all the risks..Today my little man has his spleen!! He also still very much so has ITP but seriously he had only had it 2 months how did they know it wouldn't be acute?? They felt because numbers SOOO low, and he so young it was worth it Anyway..I thank you sooo much for the information!! I refuse to take it now unless it becomes a time where somehow it would be needed to be done to save his life (oops so yes I would like the info first)

I would absolutely want to know all of the facts before I decided to do this as therapy.
Every associated benefit, risk, and rates of success/failure.

Great! Thanks for the input. Anyone else?

For sure if I were to go for Splenectomy I would like to know all the risk and precautions I will have to take for the rest of my life. Thanks to this site I am very much informed wrt ITP treatments.

I would definitely want to know and thanks to this site I know more than I did a month ago but still less than I should. My internet connection is painfully slow where I am right now so until I get back to my real home the learning is slow. My doctor has been talking splenectomy for 3 weeks now and I have only had this condition for 6 weeks. I feel it is much too soon to make that kind of decision and thanks again to this site I told him that that was not an option for me at this point.

I think the only type of person who would not want to know the risks etc, are people who have complete faith in their Dr.'s. When I was growing up there were a lot of TV shows on like Marcus Wellby and DR. Kildare who were always right.

For a lot of reasons our faith in authority figures has diminished. And seeing how much criminal behavior has been uncovered in people in positions of authority, it is no wonder people don't trust them anymore. But that is another discussion.

Yes I would want to know everything.

Of course I would want to know. I think we need to be careful of how we put things though, I don't think we should make anyone feel it should not be done or feel they will ruin the rest of their life if they get one - we don't know their specific situation really. And their decision to have or not have should be respected.

I think we do that for the most part. After the risks are spelled out and someone says they are going to do it, the "Good lucks" start pouring in.

Of course I would like to know. I would like to know the risks, if its going to work, or am I just trading one problem for another

As many of you know, I have had a splenectomy for my ITP, after messing around with steroids,
IVIG, and WinRho for 6 months. I did not take the decision to do it lightly, as all surgery is a risk.
I looked very hard at the data on splenectomy successes, and at the amount of time one might expect
a good remission. I also looked at the potential risks and costs of other possible drug treatments
(in particular Rituxan and the TPOs). At the time, the TPOs were still just barely out of testing (this was
5 years ago), so the long-term risks associated with them was not very well known (and to some extent
still aren't). Also, as a maintenance therapy, they appeared to be very expensive. Rituxin is somewhat expensive,
and has some risks of serious effects, but was a strong contender in my evaluation.

My final analysis was that I had somewhat better than a 60% chance of something like a 10 year remission
with the splenectomy, at a modest cost. The risks of splenectomy were significant, but not overwhelming.
The historic risk of massive infection and sepsis has been greatly moderate with the vaccinations
for the primary causes of these infections (pneumococcus, HIB, and meningococcus). I made the decision
that these odds were pretty good, and went with the splenectomy. It was successful,
and so far I have had excellent platelet levels.

As a more succinct answer to your question, yes, I certainly would want to evaluate the risks associated with any treatment.
Surgery and drugs both have risks. The discussions I have seen on the site that you can always stop a drug if
it doesn't work out, but can't put your spleen back, seem weak. Medical treatments also have risks of irreversible damage.

I have recently come across one issue that does seem more significant with respect to splenectomy. Most of
the issues with a weaker immune system associated with being spleenless are easily dealt with. One that recently
rose to my attention which is rare, but quite serious, has been the recent outbreak of babesiosis in the northeastern
United States. This is a tick borne blood parasite (similar to malaria) which is carried by the same deer ticks which
carry Lyme disease. In most people, it is a very mild disease, since the spleen quickly filters out infected red blood cells.
However, all the articles I have seen about it indicate that it is quite serious (can be fatal) if you have no spleen. This may
affect my plans to do some hiking in the (highly tick infested) woods in Maine. It's really the only case of a lifestyle
change I have had to make due to the splenectomy.

mendenmh wrote: I have recently come across one issue that does seem more significant with respect to splenectomy. Most of the issues with a weaker immune system associated with being spleenless are easily dealt with.

Not necessarily true. Sepsis can hit pretty quickly and can be fatal if not treated immediately. Also, people who are also on immunosuppressants have a greater risk.

Most of the studies show that death from infection outweighs death from bleeding.

It's a toss of the coin, really. I'm glad it's working out well for you.

Sandi:

I wasn't trying to downplay the seriousness of getting sepsis.
The point was that the risk is greatly reduced by the availability of vaccines for the most common
causes of it. Once you get sepsis, it's one of the most serious medical emergencies. I agree with
you completely on this.

Yes, the vaccines do cut the risk of sepsis significantly. I often stress the importance of keeping up with those. It's also important to note that having the vaccines does not protect a person 100%.

I am really glad that you continue to post. You are one of those 'success stories' that usually disappear on us. Thanks for checking in.

savvyj regarding: "...if its going to work,.." - we are all different, what works for one may or may not work for the other. I've been in "remission" since WinRho in September 2002 - but I can't say WinRho will work for someone else like that, can only tell my experiences.

Regarding sepsis - I know someone with a spleen who was on deaths door with sepsis from a UTI the person didn't know she had.

I think when pros and cons are given [and yes mostly it seems there are cons to impart when it comes to splenectomy] that we just need to watch our wording when we give the negative.

I would want to know, and I think that all of my hematologists so far have sort of dismissed "possible issues of splenectomy" rather than explaining them.

Honestly, for me personally, the percentages just aren't good enough. Maybe some day my ITP will be terrible and I'll have to do it, but for now: no.

I would want to know to make a better decision without regrets later, such as "why didn't someone tell me..?!" My doctors didn't mention anything about it not working as well for people over 50 yrs, and that the remission is often short, or risks of surgery, or high counts after surgery causing blood clots, etc. I've learned a lot about splenectomy from PDSA- thank you Sandi!

The way I see it is if someone didn't want the information, they wouldn't be on the website. They would just go along with what the doctor prescribed. So if they're here, they must be looking for information. My hemo gave me the PDSA web address at our first visit, and suggested I read about ITP (if I wanted to know more).

I don't understand how being informed about spleenectomy surgery is any different from any other surgery or treatment for that matter? Unless there is a bias or something?

No, but other surgeries such as gall bladder removal or appendix removal don't carry the controversy that splenectomy for ITP does. This doesn't just entail a risk of the surgery itself, it carries risks that can last a life time.

Having had my spleen removed it still seems the crux of the question was about being informed about the risks not necessarily the operation.

Exactly.