Husband was diagnosis with ITP and they want to do Splenectomy?

[jillpark]

They have just done a couple things to help him (iv antibiotic treatment, lyphectomy and IV globulin) I am very confused and not sure if the splencecomy is safe and will help.

[NickyD]

Hi jillpark I had seven different treatments before finding one that worked for me. One of the treatments was to have a splenectomy. It did not work and so I have to take penicillin for the rest of my life and I am prone to getting infections. There are many more treatments to try before having a splenectomy and my advice is to stay clear of it. Once done it cannot be reversed. Ask for an indium test (I did not know they existed before my splenectomy). The test will show if your platelets are being destroyed by the spleen. If they are being destroyed by the liver then leave the spleen intact. I hope that helps. NickyD

[sailor]

Hi Jillpark. NickyD is, as always, correct in what she said to you. There are many routes open which should be explored before you consider consenting to a splenectomy. Ask for the indium test and also question your specialist to see if he or she is a specialist in ITP. Many consultants are not. They will have a basic knowledge but because it is a rare condition, will not have a detailed understanding of treatment options and medications. If you look at the ITP Support Association web site, you will be able to see which hospitals around the country have haematologists with specific knowledge in ITP. Look under ITP Forum. You are quite within your right to ask for a second opinion and referral to a 'specialist' center if you are in any doubt.

You will also be able to obtain a lot of information on ITP generally through the web site so we would both recommend you join were you will be kept up to date.

Also, if your husband has only just been diagnosed, it is very early days for this action. I think most consultants would only offer this when they have exhausted other medications and nothing has worked.

NickyD knows, I have lived with a count of 10 for over 10 years with no medication, but I am lucky that I do not bleed spontaneously. I refused the splenectomy. Tired yes, a common symptom and bruising. So do not be afraid to follow other routes, ask questions and ask again if you do not understand the answer given but do not be pushed into surgery until all options have been explored and you are fully satisfied that is the ONLY option remaining. Keep us posted.

[jillpark in reply to sailor]

My husband didn't have any symptoms. Went in for a routine check up and they drew blood and found it. He, to this date, has not had any symptoms and have been treating him as if he was in full break down...massive antibiotics and globulin treatments. They did find a enlarged lymph node and removed it only to find that it was perfectly fine. The globulin treatment did work for 2weeks then way back down. I am getting frustrated with the way they are throwing darts at it with blinders on...they are all guess and no way of backing their actions. His lowest has been 8 but usually is around 50.

[rjsmyth]

Don't be rushed into something as invasive as Splenectomy. There are a number of alternatives available now.

[kered]

Yes I agree with the previous comments and refused to have my spleen removed on what could have been a speculative treatment. Splenectomy is an old treatment from the beginning of the last century .At that time there was no alternative. We are now in the twenty first century and in the last 40years there now many treatment options and more in the pipeline. ITP cannot be cured at present,only treatments are available,each with its own downside. Many ,like sailor,chose to have no treatment. Remember that you are the patient and the Dr can only advise not order, or refuse a different treatment. Find out all you can about ITP,that is important. Also many Haematology Departments deal mainly with Oncology, and ITP is not a cancer. For most of the chronic sufferers it is more of an inconvenience than anything else and we lead very normal lives.

[mags4743]

I agree wholeheartedly with everything that has been said. I, like Sailor, do not take any medications - although I have tried the usual, - Prednisolone, cyclosporine and mycophenolate. Splenectomy is such a drastic measure and as Nicky says you would have to take penicillin for the rest of your life. Do keep us posted.

Regards to you and hubby.

Maggie

[Lindylou86]

Hi I agree with everything everyone else has written, there are lots of other things to try before a spleenectomy, which I think is quite a major thing to do first with no guarantee it will work. My daugher lived with a count of 0 for a long time and had an intercranial haemorrhage and we still refused a spleenectomy, she is now on MMF and Eltrombopag and has a good stable count. Hope this helps. Regards and best wishes to you and your husband.

[toolski]

I personaly opted out of the splenectomy there was no sure evidence thayt was the cause and yet my doctor was trying to force me to have it removed which made me more determined to stand my ground,,he actualy was quite upset with me and refused to treat me any more,was realy childish with me so i ended up being treated by another doctor and he agreed with me there would have been more harm than good done,,,,wish your husband all the best

[kered]

Hi tool ski, your Dr's refusal is interesting and the childish behaviour would be grounds for an official complaint to the local Health Board I would have thought. I know you can get a second opinion,which is what you properly did, but I still think a complaint is in order as some Drs do like to intimidate forgetting it is a patient/Dr relationship and not you do as I say,particularly in a hospital situation.

[janran]

Hi Jillpark I agree with all that has been said here. I too was being steered towards a splenectomy after only being diagnosed a couple of months. Luckily I live in Plymouth where there is specialist centre for ITP. I had the indium scan which showed my liver is also involved in destroying my platelets so the operation would not have worked for me. The scan was fine, I suffered no ill effects but I did have to attend hospital every day for a week. I would definitely recommend asking for the scan to avoid an unnecessary operation. I was lucky my ITP improved after taking steroids (prednisolone) for about six months have been off them six months now and count steady around 100.

good luck to you both

[4ladylove in reply to janran]

Can u please say how they treated U for ur liver being what was destroying your platlets?

[janran in reply to 4ladylove]

Hi

I didn't need any treatment for my liver as it was fine. My liver and spleen were getting rid of my platelets by mistake because my immune system is not working properly. If I had had my spleen removed my liver would have carried on getting rid of the platelets so the removal of my spleen wouldn't have worked for me. I respond to steroids and take them when my count is very low.

regards Janet

[4ladylove in reply to janran]

Janran' so what did da doc to correct your immune system because that sounds like what's happening with my daughter.spleen gone and was told liver look fine.i So wanna have an ideal to put forth them to check out my daughter immune system.

[janran in reply to 4ladylove]

Hi

I was diagnosed with ITP 3 years ago when I was getting lots of bruises and my platelet count was 6. I am lucky as I do not bleed with low counts. They put me on a high dose of steroids (prednisolone) and my count quickly went up to a normal range. My doctor said that the steroids were keeping my immune system low so that it wouldn't get rid of the platelets. This only seems to work for a while and my count has dropped below 10 three times since then. As the steroids work well for increasing my count they have used them each time I relapsed. I hate the steroids as I get side effects like aching muscles, hot flushes, dizziness and mood swings. I have also tried MMF (mycophenolate mofetil) which helped with the count but gave me stomach problems and made my skin allergic to sunlight. I have just finished a six month course of steroids and my count is 230. I found the ITP support website and the American PDSA websites to be really helpful. There is lots of information on there about the different treatments on offer and the side effects you can expect. ITP is quite a rare condition so if you can find a haematologist that specialises in ITP that will better.

I hope that your daughter gets the help she needs soon

regards

Janet

[sailor]

Hi Jillpark. You certainly have had a lot of good advice from all the contributors. Take head of this. On a personal note in response to the Ivg treatment. When I was first diagnosed the doctors tried all sorts of drugs and I eventually ended up on Ivg. This initially lasted for about 2 months before my count dropped back. Eventually, the time span between treatments reduced and I ended up going in 1 day a week. Just over 10 years ago, the consultants opted for the new idea of watch, wait rescue and took me off the medication. I have never looked back and apart from modifying my life style a little, I am delighted to be off any medication unless needed for surgical purposes.

So what I am saying is, the fluctuations in the count after treatment and then the drop back is normal even if it is a pain the the proverbial. Go with it and take the advice given from those who have the condition and do not be afraid of challenging your consultant or registrar. Keep positive and get on with your lives as normal, but just be mindful of the dangers. Good luck, Sailor.

[jillpark in reply to sailor]

Thanks everyone....this helped greatly....I have a better understanding of what to expect and the right questions to ask. This is a great group of people and am glad I stumbled upon this site.

[sailor]

Hi again Jillpark.

The international guidelines drawn up by the leading ITP specialists in the UK and USA stipulate splenectomy should only be considered after 12 months. This would allow for the drugs to work and or remission which can happen.

Do have a second opinion with an ITP specialist before you do anything. Look at itpsupport.org.uk/itpforum/...

This will give you all the centers in the UK.

If you would like to send me a personal email I will return with my number and then you or your husband could speak to me. Sailor

[KarlsTart]

The success rate of a full splenectomy is 75% & failure rate is 25%.

I've had a full splenectomy in a bid to cure my Immune Thrombocytopaenic Purpura but sadly I fell into the latter group.

If your husband has tried other treatments & they've not worked or if his platelet levels are dangerously low then it's one route to attempt to cure it.

There's no obvious symptoms of ITP & it's only found with a routine blood test.

After having the splenectomy I take 2x250mg Erythromycin twice daily to keep my immune system ticking over, yes if I get ill it takes a matter of hours & it takes longer to get over an illness but that's no hardship as I simply get on with life with a few limitations & NO cottonwool padding.