Splenic embolization

[Morgan]

Hi has anyone had the above and did it work for them?

[sailor]

Hi Morgan.

I assume you are in the States as this is something I have never heard of in the UK, but that does not mean it does not happen. I am not a medic only a patient.

You might like to look at ncbi.nih.gov/pmc/articles/P... which gives a good explanation of what it is about but only scants over ITP and the platelet count..

I would also check that your doctor is a specialist in ITP and not just a general hematologist. I would also consider asking for a second opinion from a specialist in ITP. If you are in the States the PDSA I am sure will assist.If you are in the UK, the ITP Support Association web site has a list of hospitals where specialists are located. See ITP Forum.

Do you bleed and what is your count. Do you suffer from anything else? Of course there may be factors which are influencing the recommendation, not just ITP.

Hope this has been helpful. Sailor.

[Morgan in reply to sailor]

Hi Sailor, I live down south England and it is something that Southampton Hospital does apparently, my haemo is looking into it as an alternative to splenectomy. When my count went down from its normal 34 to 21 he gave me Rituximab and my count only rose to 24 so he asked me to think about splenectomy. In view of the added complication of possible antiphospholipid syndrome (sticky blood), Nplate was not a good option. Luckily my last blood count has risen to 27 so we are at a 'wait and see stage' as I have been ok for the past 10 years in the low 30s with only one incidence of minor bleeding.

My next blood test is when I come back from my son's wedding in Zante at the end of August - fingers crossed its risen !!

[sailor]

Hi Morgan.

I see you attend one of the clinical centers of excellence for ITP and I take it you are with Rashid, the consultant specialist there. Obviously you have to be guided by him as he has all your medical history. Some consultants still like the idea of a splenectomy, I do not and would not even consider it when it was offered to me 20+ years ago. Now of course there is the indium test which will identify if the spleen is the problem. Whilst this is not 100% accurate, it does at least provide an indication and reduces the chances of the spleen being removed unnecessarily. If you are considering removal or this embolization, ask if this could be undertaken first. It is expensive and there are only a few centers that undertake it like Birmingham and Manchester. I think also London.It takes 5 days of visiting hospital each day.

However, provided you are not a bleeder, have no other problems with your blood or general health, with a count of 27+ why not wait and see. I have lived for the last 10+ years with a count of 10, taken no medication unless needed for surgery, lived a normal life, travel abroad regularly, had one bad bleed, have annual check ups at the hospital BUT I am under strict instructions to call them should I bleed and then go straight into the hospital. I also carry the ITP emergency card and the the ICH alert card both of which are available from the ITP Support Association.

In fairness, I have modified my life style by stopping skiing but that I can live with as age is catching up anyway!!!

From what you have said, it sounds as though you have no real concerns at present so enjoy your life, keep positive, enjoy your son's wedding and do not make any hasty decisions which you may regret later until you are in possession of all the facts.

Keep us posted and Good Luck. Sailor.

[Morgan in reply to sailor]

Hi Sailor, thanks for your response. I am not unfortunately under Southampton’s care but in nearby Poole who are probably in communication with them, if it came to a decision I could probably get a second opinion from Soton. I have asked my consultant’s registrar about the Indium test – as well as various other questions. My father had his spleen removed as he bled now and again (never got a proper diagnosis, died in 1974), he never had antibiotics and lived a further 30 years so the op doesn’t worry me, more the antibiotics!

Hopefully I can get back to my count in the 30s and no more medication like you. Keep well,

[Hidden]

I am also under a consultant in Southampton. They have suggested embolisation to me as without treatment my count drops to single figures. I know one person who had it done and sadly it didn't do anything for them. Good luck whatever ypu decide.

[Morgan in reply to Hidden]

Hi, thanks for replying. Am actually under a consultant in Poole who is in contact with Southampton to see if it is an alternative. Hoping my count rises more the next few weeks so I don't have to consider it.

[sailor in reply to Morgan]

Hi Morgan. Do have a second opinion and I would suggest it will be worth a trip to London. To many doctors chase a count number unnecessarily. Providing you are well and are not bleeding, take your time before taking any radical action which may not be required and cannot be reversed. Sailor