Splenectomy Success Rate ? - If Not What ?

Hello Everyone:

I believe it is time for me to have a splenectomy. I hope to postpone it till after Vegas. I would like to connect with individuals who have had their spleen removed. I believe the success rate for a splenectomy is somewhere between 50% -70%. What is the treatment if the splenectomy is not successful?

I have had ITP for over 20 years. Counts have never gone up. Counts have slowly gone down from 65-85 20 years ago to 40k in 2006 and now low 20's. I have lived a normal life without any treatment but my doctor had said if it drops below 30 we have to do something. In 2006 I had minor surgery and IVIG got the platelets up very high for the operation after prednisone failed to get them high enough but IVIG only keeps the platelets up for 2-4 weeks. Had IVIG in Feb 2010 when count dropped to 17k. I have some bleeding issues when platelets get to 20 which is why I know it is my time for a splenectomy.

I am taking prednisone now. I saw a post from someone that said their body did not respond until the dose got to 50 mg. I changed my dose from 20 to 30 last week and I was surprised that my count changed from 25k to 40k. I might try this experiment with my doctor to see if this helps. I thought 20mg was high enough but maybe not.

I will be attending the Vegas program. I did go to the Washington DC program a couple of years ago. Many thanks

Hi Hank,

I am a failed splenectomy patient. I had a laproscopic splenectomy in 2004, and within three months, my counts had dropped to 10, and I was back on prednisone. (Prednisone does work for me.) When I had the splenectomy I was under the impression that 2/3 of splenectomies were "successful," which I thought meant a cure. Later, I found out that "successful" meant remission for an indeterminate time. The "success" rate for those over 60 (I was 63) is not as good as it is for those younger.

Is your doctor a hematologist?

When you tried prednisone in 2006, what was your dose?

It is possible, of course, to experiment with lower and lower doses of pred--say 30 one week, 28 the next. This is the pattern I use--when my platelets get too low (below 20), my hema raises my pred dose, but not a lot. If my platelets respond, he drops my pred dose. Except for two days before my splenectomy, I've never been on doses over 40 mg, and that not too long.

Have you looked into WInRho? This generally works only for someone who has not had a splenectomy. I was sorry I didn't try it before my splenectomy.

Many have had months or years or remission with Rituxin too. (It didn't work for me.)

The Las Vegas conference should give you a chance to investigate your options.

Hank wrote:

I have some bleeding issues when platelets get to 20 which is why I know it is my time for a splenectomy.

Hank - that statement does not indicate to me that you need a splenectomy. That indicates that you just need to treat at that number. What else have you tried? There are several options.

If splenectomy fails, you are back to the exact same treatments you could have used before, except for Win-Rho.

Hi Hank. I too am a failed splenectomy patient. I had mine three years ago now. I have never been off the pred since being diagnosed with ITP in /04. The highest dose I was on was 60, but I complained to my hema dr and he dropped me down to 50. I will not go any higher if I have to go back up. I'm on 5mg every day. I went with the splenectomy because I had tried everything that was available to me. I can't say I'm sorry that I did it, but I am disappointed that it didn't work. Like everyone else says, it's a personal decision and I hope you weigh all your pros and cons and made an informed decision. And try everything else that you can!

Good luck and keep us posted.

I appreciate the comments. Every story educates our ITP community and provides good information. Thank you very much! Hank

I have scheduled my Splenectomy for Sept 17th. I believe it is the right decision for me. I will give updates as my ITP journey goes forward

Hank

I hope your operation goes well with you.

Remember, those whose operations succeded might not be on this website for the sole reason that they are living normal lives.

I have had ITP for over 16 years. Fought with the drugs and the merry go round if ups and downs. Had my spleen out in 2005..my counts soared..I had two strokes and 3 years of remission. I had a round (8 doses) of Promacta in June of 2009 and have been in remission since. Knock on wood..

Hank
I wonder if you are still reading this because I am new to this site and hadn't seen it before more to the pity.

Yes I have had the splenectomy and because mine was so overgrown they did open surgery so to speak. Aparently Spleens can grow back if the smallest piece is left behind and that is what happend to me.

Initially my counts rose to normal level after the op, but then around every year or so they would drop for a week then with IVIG and steroids they would rise again. Mine is idiopathic. But as far as I know I haven't had ITP now for about 8 years. This year they discovered a drop but at 37 was in the safe zone and didn't need any treatment - though I go back October 12th for that confirming. I didn't notice the ITP because I didn't have my usual signs and was in A&E to what I thought - other reasons until the platelet count got (re)discovered.

So for 8 years I have been okay ITP wise. I have had meningitis and Septicaemia and now on lifelong Penicillan to help reduce another severe illness. Off which am waiting to receive cognitive behavioural therapy because of becoming over anxious about my health in that I notice every change in my body. etc. You could say from an ITP point of view - in the long term it has been a success.

We are all different.

Thank you for your comments. I have heard many stories on successful spleen removal and living happily ever after. When I was in Vegas I heard many stories of spleen removal not working and these were sad. You also hear stories of spleen removal working for a period of time and then back to low platlets.

My date with my spleen is Friday Sept 17th. I respond well to IVIG and have a treatment scheduled for Monday which should get my platlets up to 100k - 200k by Friday from 20k - 30k currently. It takes a couple of days to work. An IVIG only lasts for a couple of weeks then back to low platlets. I wondered if I needed a treatment as platlets usually skyrocket right after the operation. Better safe then sorry.

I have had IVIG 3 times in the past. I only need 1 treatment. I believe protocol is for 2 treatments. IVIG is expensive. I get it as an outpatient. My insurance company pays the hospital over $14,000 for each treatment. The hospital bills over $25,000 and they allow the $14,000. I put this in for general information for those that have an interest in numbers. I live in Cincinnati Ohio

I had my Splenectomy a week ago. I spent 4 days in the hospital. It is now over and behind me. Initial results look OK. Next couple of weeks or months will be more definitive.

My 2 IVIG treatments a couple of days before the operation took my platelets from 28k to 117k the day before the operation to 177k on the day of the operation. Platelet count after the operation was 179k - 189k - 233k - 299k. The IVIG treatment in the past would last for 2-3 weeks. Not sure if platelets are up due to IVIG or spleen removal? The 299k reading mekes me think that the spleen removal is contributing. I will get checked next week.

Things are good for now

Hank

Good to hear. Had my splenectomy almost 10 years ago and my platelets still range up around 300K. Keep everyone posted.
Lisa