Splenectomy next Friday

Hi. I am new to this community! I was diagnosed this past August although we assume I had ITP much longer. I have had a rough year. I have autoimmune liver disease and found out I have a split spinal cord. I was going for a myelogram that was cancelled because the found I had low platelets. Fast forward 3 months and prednisone and four treatments of rituxan and I went from 80,000 to 40,000 platelets.

Not responding at all. My spleen is enlarged and with much discussion all my drs agree a splenectomy is necessary. Asap as well because my platelets keep crashing.
Also with my spine problems I will be facing other surgeries and don't have much time to waste ( my spine caused months of inability to walk)

I am pretty nervous for this as anyone would be. I was hoping to hear from some who have gone through this. Any info good/bad anything! They plan on doing it laparoscopicly but there is of course chance for opening me up. I will have blood and platelets in hand as well.
Ah I'm so nervous and stressed out! Any thoughts/tips/experiences welcome please! Thank you!

Welcome to the community! Sorry you have to be here.
Wow you are going through so much!
When is your surgery?
I hope your doctors are aware that Rituxan can take a while to work, and that they are well informed on ITP in general.

How did they come to the conclusion that you have ITP? It is generally a diagnosis of exclusion. In other words they have tested for everything else and that all turned out negative. With so much going on in your body, it might not be ITP. Of course I'm not a doctor, but I would make sure with the diagnosis before having a splenectomy, which may or may not help the ITP. Generally people with ITP do not have an enlarged spleen.

I have not had a splenectomy, so I can't say anything about that, but others will chime in. Weekends can be slow, so be patient with us!

Hi Brie - welcome.

Most people can manage quite well as long as counts are over 20-30k. However, since you need surgeries, I can understand why you'd want higher counts.

Ananta is right, the spleen is usually not enlarged with ITP and sometimes problems with the liver can be the cause of low platelets. If your spleen is enlarged enough to rupture, that would be reason enough to have it removed, but having the spleen removed does not always result in a higher platelet count. Sometimes it can be successful initially, but counts drop back down weeks, months or years later. There are a few other treatments to raise counts though, so you would have other options.

Good luck to you. Please let us know how everything works out.

Thanks! Sorry I should have clarified. - my spleen has been enlarged since 2009 since I was diagnosed with my liver disease. However it has become slightly larger and my white blood cell count isn't good either. We did eliminate other things besides ITP and I have worked with my liver dr and hematologist and oncologist. All agreeing ITP and agreeing I am non responsive to treatment. Yes usually rituxan would be given longer but I didn't even stabilize on rituxan and with my liver they want as little toxic medication as possible given to me. As well as my spine issue I am limited on time because there is no telling if or when it will affect my legs again. I am pretty confident in my drs and my decision. I do understand where you all are coming from and I appreciate it!

Oh and my surgery is friday November 14th! I just went for my pre admittance testing today.

Also I was told it is only about 70% chance for remission. so I am aware it's not a definite fix. I was checked for all other things as well and they all turned up negative

I will go Monday to check my platelet count again since I am dropping rather fast.

Hi ,
I had mine removed in 2012 . Surgery was done Laproscopically ,
,was not too bad .... I healed slowly though , and couldn't work for 4-6 additional weeks.
Like Sandi said though I was told 70 % chance , and I was told some additional 10-20% of
those showed improvement . Thats what happened 2 me .
My mother had it(ITP & SPLENECTOMY) and had complete remission . but there are no guarantees .
I used to average 15-20 k and now I average 60k. (but sometimes as high as 130k)

One funny side effect , I got the Spleen removed & my sense of taste was horrible for many weeks.
forget what its called. But my mother had same experience .
GOOD LUCK & GOD BLESS
SuperDave
trying to stay posetive

Thank you!

I'm hoping for laproscopic as well!
That's what they plan on doing anyway.

Brei,
Please keep us posted !
a prayer 4U !!

SuperDave
trying 2 stay positive

Guess that means tomorrow.

Thinking of you and wishing you the best Brielizabeth! Keep us posted when you can, ok?!

Brielizabeth - just read your posts. I hope your surgery went well and your recovery is progressing. I had a splenectomy almost six weeks ago. I've been pretty much back to normal for about two weeks now. I don't know what your case will be, with additional issues to consider, but I'm hoping for the best possible outcomes for you! I was also quite nervous and anxious before my surgery, but felt really comforted by my doctors, nurses, and family, so hopefully you've experienced the same! Let us know how it went when you are up to it.

Thank you everyone for your well wishes! I figured I would put off telling about it all until I saw my surgeon.

Unfortunately it did not go as planned. I still have my spleen! For now.

My surgeon went in laproscopicly and looked around with cameras first ( I guess that's normal) saw my spleen is as he put it - grotesquely large, bigger then he has ever seen actually. He also checked out my liver since he only knows of my liver disease and has not seen it himself- didn't look good to him. He took pictures and stopped and closed me up.


I have just two small incisions and though I never needed pain meds (yay) I'm pretty uncomfortable still. Luckily my job has covered me up till the 2nd of December so I am just resting.

I went yesterday to find out the plan.

Basically he couldn't remove it because I could have another condition as well. He believes it is ITP but it could also be portal hypertension which is caused from liver disease. I know some of you mentioned my liver causing it. We are still very skeptical of this diagnosis - my liver dr has taken great care of me over the years and has seen the pictures from my surgery and so far no concern.

We also believe it is ITP because my spleen has been enlarged since my liver diagnosis 10 years ago. However my platelets have been completely normal until fairly recently.

He also has said he has seen rare cases where it will be ITP but then because of the liver disease the spleen will over work and while platelets are being distroyed it will also begin to back up with some of what is left ( crazy!) I wouldn't put it past my body to do something insane like that.

Anyway. I need to see my hematologist Monday who will check my platelet count and go over the surgery report and pictures and mAke my final diagnosis.
Then I schedule to have my splenectomy asap. This time it will be open
He couldn't take it before with out a difinative diagnosis because if it is only the portsl hypertension I need to be on a medication to help me if I ever need a liver transplant. Without it the new liver would not survive. I love that he didn't just take he spleen and hope for the best!
He still believes it is just ITP and my spleen is 'freaking out' ( his words haha) my body does not act the way it is 'suppose to' in many of my illnesses. I have been through this for years not being able to get a diagnosis or being between more then one because my body doesn't act right.

Sorry for such a long post/rant. I will be so happy when all is said and done!

Brie - wow, I'm sure all of that is an emotional roller coaster! Lots to handle there!

I guess the only way to know for sure whether it's the spleen or liver causing the low platelets is to remove the spleen and see how the counts do. It sure sounds like it needs to be removed anyway due to it's size, so you have nothing to lose by getting it out.

Please keep us updated. I've been wondering about you!

I just remembered that I saw an article a few weeks ago that might apply. I don't know if this will be helpful or not, but here it is.

www.ncbi.nlm.nih.gov/pmc/articles/PMC3033122/

Thanks Sandi! It sure has been a roller coaster. I looked at the article. I'm not feeling too well so maybe I didn't understand it well (oops) but from what I see it primarily talks about hep a, b and c. I don't have that. Mine is called autoimmune hepatitis. Strictly autoimmune but thanks for sharing it. I will look at it again when I feel more alert haha

Well that sure isn't what we were expecting - so sorry Brielizabeth for this turn of events. That spleen doesn't sound good, can understand why they want it out asap.

Know of someone with autoimmune hepatitis but it wasn't diagnosed for a number of years - it is good yours was diagnosed.

Thinking of you and hoping for the best!

I didn't know which type you had, that's why I didn't know if it would help or not.

Feel better soon...I hope you don't have to wait too long.

No not what I was expecting at all!

Sandi- that's fine! No worries it was appreciated anyway!