TOPIC:

Hi im jackie and i have had itp for 6 years now i was diagnosed on september 17th of 2005 and i was 13 years old i have tried every treatment under the sun from win-rho to steriods and i.v.i.g and now even rituximab i.v.i.g has been the only thing that has ever worked for me without problems and now it just doesnt last as i long as i need it to to be successful so rituximab was kinda my last resort and it has worked at all in this past year i have been leveling out under 10,000 so now my doctor is having my meet with a surgeon next week to set up a splenectomoy and and im scared out of my mind because it is major surgery i just would really like to hear from ppl who have been through this process and know how you were feeling and what recovery was like and if you had a relaps or if it actually worked for you




thank you

-jackie

I had a splenectomy 3 years ago. It was done laparoscopically, through 3 small incisions. I went in to the hospital the morning of the surgery, and went home the next morning. I had it done at a major medical center (Vanderbilt) by a surgeon who specializes in minimally invasive surgery, so it was (I think) expertly done. The surgery itself was supposed to take about 45 minutes, but apparently he actually spent about 2 hours at it.

Afterwards, I had significant, but not intractable, abdominal pain and pain radiating up through my chest and shoulders, which is a result of the CO2 gas they use to inflate your abdomen during the surgery, so they have room to work. This lasted on-and-off for a few days. The surgery was on a Wednesday, and I returned to work the next Monday. I walk to work (about a mile), and the walk was somewhat slow, since I still had some tender spots. The next weekend (10 days after surgery), I went on a short (3 mile) hike with a church group, and was still a bit sore from the bouncing around going downhill.

My counts responded extremely well to the surgery. I have had 350k platelet levels since. Although I know this was major surgery, I think it was worth it. It has risks, but all the drugs have risks, too, and are very expensive. My decision at the time was that the statistics on the surgery are significantly better than a coin toss (probably in the 60-80% success rate, depending on who is counting and how they define success), and those odds sounded really good to me.

Good luck, and I hope whatever decision you make comes out with a favorable result.

thank you this makes me feel a little more at ease with this situation but i didnt know it was such a quick recovery thats awesome but ya i know for a fact that i am going to go through with it because i have no other options right now

I hope you know there's no guarantee a splenectomy will resolve ITP nor anyway to know in advance. I was in your position in 2001 and elected the surgery (didn't seem I had any options since I was < 5 and even 0). Mine was the "Open" incision because the surgeon wanted "access" to clearly search for secondary spleens AND to have access in case of bleeding. The recovery was several weeks but it wasn't that bad after the first week. My count immediately jump > 300 and settled around 300 for the next 10 years.

Unfortunately ITP has recently reentered my life and I dropped from 300 to 10 over 6 weeks. I have my fourth and final Rituxan infusion next Monday and as of this minute I've not shown any favorable reaction and my platelets are slowing falling (17 right now). So unfortunately I'm a good/bad example - good cuz it worked for 10y but bad because it only worked for 10 years. But they've been 10 good years and I would do it again given the same scenario. It seems a lot of people here are anti-surgery but I think it's just another option with it own risks and consequences just like all the other treatments. I also believe the "successful" surgeries move on without this site so we don't hear much unless it reoccurs (I'm an member of that group).

Obviously this is a personal decision and only you can make it considering yourself, the current treatment(s) status and info from here and elsewhere. Just be informed as best you can and don't look back - always forward. When you've made as informed a decision you can at the time, don't look back - only forward.

well i think 10 years is a very good run and im sorry to hear that the rituxan isnt working for you it didnt for me either and thats why they have decided to go on with the splenectomoy. i just finished my final treatment of rituxan this tuesday and at first i thought it was going to work because i had jumped from 5 to 67 but then i dropped right back down to 5 the next week and then 12 and now im currently at 8 so im just a little worried on what they are going to treat me with if i do end up having a relaps ya know?? like the i.v.i.g. does work but only for a month or so and in 10 years well im guessing i will be a pretty busy woman lol and wont exactly have time to drop everything to go into the hospital for 5 days.

Jackie - not everyone is hospitalized with low counts. Many people treat out-patient, even with low counts. There are ways to manage ITP and still have a life; I hope you can get to that point.

It's still early for Rituxan - you could still get a response.

Just would like to say I had splenectomy back in 1994. I was in my twenties at the time and now in my 40's. To keep it short and simple for you, I hope they will tell you about aftercare. I now take penicillan 2 times a day everyday for life. That acts as a spleen. I do have to take care around people with major infections as I pick them up . All it means is that the doctors either increase my penicillan or give me amoxicillan. Not sure if that is the same thing in USA. I am in United Kindom.

Yes I was sore for six weeks after the operation. I had quite a big operation as my spleen had overgrown! It was a case of taking it easier for that time. My family had already booked a camping holiday in Spain and yes I went with the permission of the doctors. I was tired and went to sleep in the car a lot of the time. After all I had only been out of hospital for 6 weeks after having my life turned upside down because I hadn't heard of ITP and spleens two month previous to that. I had a lot to learn in a short time.

You will be strong enough to go through with the operation. It will be sore for a time. I hope that you knowing I have had the spleen out for nearly 20 years will encourage you. Yes ITP has returned but mine is very mild from what I read about. Take each day at a time and relax.

There is a wide range of opinions about and reasons for aftercare. I am in the US.

I was given the appropriate vaccinations to reduce the risk of sepsis (Pneumococcus, Haemophilus Influenzae B (HIB), and Meningcoccus). However, I was not given any ongoing antibiotic therapy, and have had absolutely no trouble with infections since. I think this is fairly typical in the US, unless you have other conditions which would either make you more susceptible to infections, or are in a situation which would make infections abnormally dangerous.

Yes, prophylactics are not very popular in the US because of the risk of becoming resistant to the drug.

The main risk with splenectomy and infection is that if you get a certain type of infection, it can move very quickly and become very serious. That's why any fever should be taken seriously and treated right away. Time is an issue when a person is asplenic, and you can acquire a serious infection in a few different ways, not just by being around sick people. The immunizations are very important and I always feel I have to stress that....keep up with them!

I ended up in the ER twice immediately following my splenectomy. Both times with a fever around 102. No bacteria showed up in the culture, but I got antibiotics anyway. The ER docs found an abscess where my spleen was and ended up inserting a drainage tube to try to shrink the abscess and continue the healing process. The rest of the story is a little lengthy, but so far it's been 6 weeks since the operation and I'm back to playing with chainsaws and other sharp stuff in my free time. Bottom line is that fevers are a big deal. No one wants to die or lose limbs from sepsis. That's much worse than a trip to the Emergency Room.

I have all the vaccines prior to the operation too.

Penicillan is debatable for those reasons in UK too but having had Phumococcoal (spelling)Meningitis 2004 and Septic Shock (Stage worse than Septicaemia) 18 month later they decided to put me on Penicillan and I haven't had any further serious illness. Though Septic Shock given me vertigo and related issues with vertigo but that is all. The doctors in the hospital that treated the Septic Shock were almost appauled that I wasn't already on life long Penicillan. Once recovered from Septic Shock and visited the GP back then, he overruled the Haemo consultant (who had decided I didn't need them after two years of the operation) and claimed that he didn't know I was a spenectomy patient and their pratice says that ALL splenectomy patients to be on them.

So yes that is one very hard lesson I learned. Never assume the doctor you are seeing knows that you have had a splenectomy. ALWAYS tell them so that they know the infection MUST be treated! Make it a natural part of your introduction whenever you go into see a doctor or dentist because we cannot afford to take risks with infection. If we look after ourselves then we be okay.