Does anyone have any experience of why anyone with Polycythemia Vera and Portal Vein Thrombosis, with a 22cm spleen would be offered a partial splenectomy, a spleen embolisation through the groin? Has anyone been through this?
My 48 year old brother went through this on 3rd April 2023 and it has nearly killed him. He remains in hospital. He developed necrosis, sepsis and ascites. The hospital he is in - a very famous London hospital - does not accept that PV is a blood cancer. He has no access to any clinical nurse specialist and never has done. He is just languishing in a bed. After weeks he now has a pic line. His arms were a mess.
My brother is very trusting and went along with this 3rd April procedure and didn't really understand it. He didn't want it. He was chased down to have it. He was well before it. He had had one spell of melaena, which he recovered from and some spells of going yellow due to dislodged stents, which would be dealt with, with a few days in hospital. But he took it in his strike and lived a relatively normal life. He was diagnosed with PV in April 2021.
He was working before the 3rd April 2023 procedure, but now he believes he is facing death because he has just been told that the residual spleen he has left 'isn't coping'. So he may have to have surgery but there are going to be huge complications, is what we have been told. He has stents too.
He has an external drain from his spleen area and puss comes out. There is necrotic tissue from congealed gunk stuck in his body. Something has happened to a capsule that we don't understand.
He is emaciated. Almost bed bound. No one ever talks about his PV with him. The procedure has been more harmful that the conditions he had beforehand.
If anyone has any experience of this, I'd love to hear.
Thank you,
De
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DeKa
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This sounds horrendous. It is really important he gets An mpn specialist. They do exist.. there is a link on this site or mail Maz. I had ET progressing to MF and had a painful large spleen. 25 years before I'd had a portal vein thrombosis. Luckily I didn't have any spleen removal. However I've just had a stem cell transplant and my spleen had to be reduced/removed. This was done using radiotherapy. I don't know if I have any functioning spleen left so am on prophylaxis for infections.
hi I had an enlarged spleen in 2013 was that enlarged I was cycling and my spleen was pushing down into my groin area I was walking bent forward for days
The haematologist told me not to do any exercise at all to they removed it through keyhole in my groin luckily mine went ok I had the operation on a Friday and was home Tuesday I’ve been fine since
I have PV and ET I’m on hydroxycarbamide 1500 mg daily and VK penicillin
Thank you so much for sharing. My goodness. It is amazing that medications reduced your husband's spleen size. I'm relieved that you haven't gone through what my brother has. It's brilliant that your husband is able to access Ruxolitnib. My brother was never offered any medication to try and reduce his spleen size. Yesterday I asked about Ruxolitnib and we were told that it isn't available for patients with Polycythemia Vera. Thank you so much for sharing. We are in hell right now.
My brother was told at C & W Hospital on Friday - I was there and I asked directly about it - that Ruxolitnib was not approved. Maybe this is just the UK that it's not approved in. His hepatologist told me that he'd never heard of it about 6 weeks ago, after I saw it in an article and told him about it. This is definitely the right place to ask for help and advice. I hope things are okay for your husband. They have our lives in their hands. Your husband is lucky to have you to protect him X
Hi Deka, Just Google can PV patients take ruxolitnib and the answer is yes . My husband was on hydroxy after two years it made him extremely fatigued his iron was non existent he then qualified for ruxolitnib as his spleen was enlarged .
I think he might have had it if he was at another hospital that was participating in trials but his care team don't believe the PV is a blood cancer, so he was never going to be included in any trial, due to their lack of advocacy. I am gutted. xx
PV, MF And ET are all blood cancers they were originally called blood disorders but the ABI reclassified them to MPNs N meaning neuroplasms new growth .
They used to be called MPD meaning the D was disorder.
I would definitely get some more advice as it's worrying people treating your brother aren't aware that PV is a blood cancer.
Get a mpn specialist at another London hospital. Claire Harrison at I think Guys is uk leader in this field but others in her department should be equally good
Yes. You are right. We asked for a referral - to Guy's - exactly 11 times over the past 5 weeks and have been ignored by C&WHosp. PALS turned my communication with them into a formal complaint because it's not okay that we've been ignored. Even PALS got sick of it! C&WHosp is 50% private, where lesser royals have babies. They had a swanky 30th anniversary event in the main atrium, with speeches etc, with the CEO. It took me all my strength to keep my dignity and not grab the microphone. My bro got allocated there because it's linked to West Middlesex Hosp, near where he lived. Post code lottery failures.
That is absolutely dreadful. I do not understand why the procedure was done based on a having PV and a portal vein thrombosis. The only reason would be significant splenomegaly, which does occur with PV. While PV has been considered to be a "cancer" since 2008, not everyone looks at it as one. Regardless of that issue, the care your brother received does not appear proper.
It sounds like your brother has experienced a nosocomial infection as a result of his care at this hospital. It should already be under investigation as an adverse event resulting from healthcare. It would also be appropriate to file a formal complaint on his behalf if he is not able to do so himself. It would also be appropriate to consider a transfer to another hospital. Guys has an excellent reputation and access to MPN Specialists. Perhaps others on the forum familiar with the NHS can advise on how transfers work if he wishes to pursue that option.
Your brother absolutely needs to arrange to see a MPN Specialist. The MPN care team at Guys is one of the best. Here is a list of MPN Specialists. mpnforum.com/list-hem./
Thank you so much for the info. It was exactly what I wanted to hear. We have been asking a Consultant for a referral to Guys for 4 weeks to no avail so today I wrote a formal complaint. Literally can't take anymore. The puss is just oozing and oozing and it's just a matter of time before a crisis happens and I've already told the hospital that there is no way that anyone else is touching him without any expert PV advice. Laparoscopic spleen embolisation is barbaric. Should be banned at C&W Hosp.
What has happened is obviously not according to plan. This sounds like a very bad outcome from the procedure. It sounds to me like what he needs most at this time is an excellent surgical team to evaluate and take care of the current problem (infection, sepsis, etc). A mpn specialist would also be beneficial in consultation with the surgical team. Just my opinion.
Best to your brother going forward. Thoughts and prayers.
Thank you for messaging. I agree. I've asked for a referral to an MPN specialist. I'm like a spleen guard dog. Told everyone that no one is touching him without agreement for a referral. I'm looking at transfers too.
Reading about your brother's awful situation sent a chill down my spine. Longish story short I was being treated for ruptured gastric varices during the period with rapidly progressing MF and prior to my STC. I had already been diagnosed with a portal vein thrombosis (hence the varices) and also had splenomegaly at around 20cm. During the 10 days or so I was in hospital I was seen by hepatologists, gastroenterologists and of course haematologists. I think I was an 'interesting' case. A splenectomy was discussed, a TIPS procedure was discussed, and with the sheer number of consultants who came to my bedside proffering their prognostications, diagnoses and treatments I was left feeling a bit confused. At any rate I was discharged with neither of the above being done, and when later on I had a consultation with one of the haematologists at the hospital she was very dismissive of the suggestion that I might have a splenectomy. Given where I am now she was of course correct. 'Do no harm' is the Dr's oath and hearing about your brother's treatment it rather sounds as if this oath was not fulfilled. I agree with the other replies that urge you and your brother to seek the most expert opinion you can obtain from physicians with the experience and competency in relation to your brother's situation. I always say that 'the squeaky wheel gets the oil' and so you must be prepared to 'squeak' and to do so loudly and firmly. I was given this advice by an American friend (he has PV) and in all honesty I believe that in following this advice I got the STC, and I am consequently here to tell the tale. I wish your brother well.
I can quite understand why you got a chill. Thank you so much for messaging. You had one hell of a lucky escape. And it sounds like you have been though a lot. I am 'squeaking the wheel'. I agree. I have asked for the risk assessment and evidence base behind this procedure being offered to him (he was pressured to have it). I have asked what the hospital outcomes are for this procedure, and to describe the input that was sought from any haematologist, which we know there wasn't. I have insisted on a referral to a PV expert. I am very pleased that you are here to tell the tale! This forum is blinking amazing.
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