Hi All,
I had my CT scan results today, that showed varices on and around my spleen as well as my esophagus and stomach which I knew about previously. This is new info to me, so I don't know what it means in terms of my cirrhosis grading, or ongoing management. Has anyone any experience of this, and if they bleed like esophageal varices,how are they identified, as they would be internal bleeding.
What does the team think❓❓❓
David
There doesn't seem to be a lot on line about Splenic Varices even the one article which keeps repeating seems to venture more into the Splenic Aneurysm side of things which is what my hubby had and which was discovered on CT scan at transplant assessment. sonoworld.com/CaseDetails/S...
Hubby had a 19 1/2 cm large spleen at the time and numerous aneurysms. This could have caused a massive and catastrophic bleed if it had gone undiscovered and before he could go on the t/p list he had to have an embolization operation to block the aneurysms. The result was he ended up with a partial splenic infarction (parts of his spleen had no blood going to them). His spleen shrunk back to about 9cm, platelet count improved dramatically from 20 to 200+ and INR (blood clotting time) normalised. The resulting reduction in portal hypertension actually improved his condition so much he was removed from transplant list. In some countries this is actually a treatment option for portal hypertension related spleen issues.
Hubby now has what they've classified as a non viable spleen so I guess it is less effective in renewing red blood cells and also his immune system needs support each day with Phenoxymethyl Penicillin tablets.
It might be a different issue with the varices but it's something you really want to clarify with your doctors as to what treatment is available.
Katie
Hi Katie,
Many thanks for your comprehensive reply. I will read up on the link you kindly provided. My spleen is 19 cms currently, and platelets have improved from 33 to 54, so going the right way.
I see the consultant in April, so I will ask about the affects this new development will have on my management. I would hope, that if it needed treatment, he would have mentioned it in his letter, but TBH I don't have much confidence in him.
David
Still wanna know!? Sir Rosis.
The one you've been waiting for?
Forwarded is forearmed I suppose, I'm sure you'd be seen earlier than later. Wait & see.
Stomach, reminds me I've to ask about my last OGD Esophagus clear but he mentioned something to be expected in the stomach?
I've got US on 7th & see himself on 12th. Later than expected, but sooner the better eh. 🤔👍
Thanks Ofecky, I like Sir Rosis.......I might adopt it😊😊😊
Sorry David - not a clue but do hope it’s not too bad? What did they say?
Miles
Hi Miles,
The report just said the CT (with contrast) showed varices on and around the spleen, as well as the varices in my esophagus and upper stomach.....which I already knew about. He said this showed no reason for my capsule pain, and I assume, not liver related and therefore, not his problem. he also said my pancreas was OK.
I just wondered if these internal varices were at risk of bleeding, just as the esophageal varices are, and how I would know if it happened.
David
I think they need to look at these, if they are similar to an aneurysm then a bleed could be catastrophic as your spleen contains so much of your blood at any given time. Hubby had to have his aneurysms embolized about a week after discovery as it was that urgent. You must ask about them and get clarification as there is next to nothing on line. I have been searching since my earlier post.
Katie
Thanks for your efforts Katie, it's much appreciated.
That sounds quite alarming!!!! I will call the consultant's secretary on Monday morning, although the last time I asked to speak to him, It took him 4 weeks to reply.
If he thought there was urgent action needed,I would have hoped for an immediate reply from him.
David
Maybe see
pubs.rsna.org/doi/pdf/10.11...
Page 614 perisplenic...
Too heavy for me!
Miles
Let's concentrate on 1st paragraph.
Among these collateral
pathways, esophageal varices are the most important clinically because they are a fre-
quent source of gastrointestinal bleeding. 🤞
This article presents the CT
appearances and the prevalences of 1 2 types of
varices: coronary venous, esophageal, paraum-
bilical, abdominal wall, perisplenic, retrogastric, paraesophageab, omental, retroperitoneal-
paravertebral, mesenteric, splenorenal, and
gastrorenal. Other, less common portosystemic
collateral pathways are described, and correla-
tion with other imaging modalities is discussed.
Shunt that. 🤔
Hi David,
I have numerous splenic varices along with large stomach ones and intestinal and other abdominal varices. (I suppose these are the same thing classified in different ways by different radiography Dr's. When they first told me about splenic ones I was in a terrible panic, as like you I thought, how would you know if they were bleeding.. My Dr reassured me that oesophagueal ones burst due to the activity in that area, food goinf down, and acids causing them to be vulnerable. Splenic ones aren't under these traumas. I did stop doing yoga, as quite a bit of that is increasing intra abdominal pressure, not that they told me too, but I didn't want to go to the class and miss stuff out being nervous etc They would advise against contact sports (with an enlarged spleen), or heavy lifting, so that would be the case with varices I think.
I was told carvidalol is the best drug for oesophagueal varices, but there isn't a great deal of evidence for the effect it has on other varices. However they hope it'll reduce the PH and therefore reduce bleeding risk.
Are you taking a beta blocker? Propanalol or carvidalol?? I think that's all the treatment they offer. Other than surgical options like Tips, in extreme cases.
Anyway, that's what I was told, and it stopped me worrying!!
Take care x
Splendidly said. 😜👍
Hi Elisa,
I hope your dental work was OK, and you are no longer in pain.
Many thanks for your reply, you have put my mind at rest a bit, but what I worry about is with my enlarged live and double sized spleen, the capsule pressure pain I have must mean more pressure on these spleen varices. My hepatologist still thinks my pain is not liver related, but the CT scan showed no other reason, so I'm at a dead end with him. I only take omeprazole and folic acid, which was prescribed when first diagnosed with cirrhosis nearly 4 years ago, and no other med's have been mentioned.
I have many questions to ask at my next appt. in April.
David
David, I have suffered with RUQ pain for about 18 years. I spent 7 years using fentynal patches plus tramadol to try to cope with it. As I have PBC my Dr said he didn't think that was the cause, so sent me for so many tests. I had a morphine provocation test, an endoscopic ultra sound, CT, MRI and finally a laprascopic investigation under GA, with biopsies of my liver and pancreas (which caused a post op bleed, resulting in two more surgeries, 2 weeks in hospital, and a melon sized haematoma). Finally it was concluded that it is likely to be capsule pain due to PBC. I too have a 19cm spleen, and lymph nodes all around my liver, so this is also likely to cause pain, from pressure on the area. I also have some scarring, which could also cause pain.
So I'd say from my experience it probably is liver capsule pain, maybe you could ask to be referred to pain management, they wanted me to try gabapentin or pregablin. Unfortunately , my disease is too advanced and even a very low dose affected my liver enzymes. But they do have ways of helping you cope with pain.
If you have varices I'm very surprised they didn't start you on beta blockers, did they say what grade they are? Maybe if they're grade 1 they aren't currently too concerned.
Write down your questions as you'll forget by April.
Thank you for asking about my tooth. Procedure went well, but once the local wore off I was pretty shocked at how painful it is. Hope it will be a bit better. I haven't eaten so feel a bit odd too!! Ho hum the joys of life. X Take care x
Hi Elisa,
They have certainly thrown the kitchen sink at your pain issues. My varices are "small" but wasn't told the grade. The only pain relief I've been offered is paracetamol, amitriptyline and recently codeine by my GP, but all in reduced doses. I already have a list for April. They seem to shy away from committing themselves on pain relief, so my Hematologist only mentions amitriptyline.
It sounds as though you have a more proactive consultant than I do.
I hope the tooth pain stops very soon.
David
Hiya, as you know I know very little which why I am always asking you guys for help but I did wan to give you my best wishes and hope all is ok and you get the answers you need
Pam x
Thank you so much for your kind words, it's much appreciated 👍👍👍
Isn't the support we get on here amazing. We should bottle and sell it....we'd make a fortune😊😊😊
David
Hi Davianne, this sounds bloody scary to me my lovely. Get your nagging head on and don’t take it off till the drs sort you out xxxx Jane
I had a massive gastric bleed but my varices are tiny. It was caused, as far as I can work out, by scarring in my stomach caused by scarring of my liver. I have oesophageal grade1 varices and chronic liver disease. Sorry that isn’t terribly helpful!
As advised, get doctor/consultant to take your concerns seriously.
xx
Thanks Cobwebs,
Similar to you, I have F4 cirrhosis, and small varices in my esophagus and upper stomach, don't know the grades. But I was told that in future they only need checking every 2 years now, which I thought was a positive sign, but after your experience, I'm not so sure now. My confidence in them gets less and less.
David
Hmmm. I had no varices in December 2018 when I had a gastroscopy. I wasn’t sure why I had the gastroscopy and it wasn’t explained. I must try to be a more difficult patient and ask far more questions. My family and friends will call me difficult and opinionated! But I suppose I was frightened. My official consultant clearly sees me as difficult and opinionated!! He discharged me to the care of my GP with no referrral. We really don’t see eye to eye. But the hospital stay in November didn’t involve him. My consultant was young and cute! Bizarrely, though I was semi-conscious, I packed as if I was going for a weekend away! Tinted moisturiser..... Call me a trollop if you wish!! But I do have a referral this time.
Love Deb x
Hi Debs, you certainly have Spirit, but that's not difficult and opinionated.
You have a right to ask all the questions you need to, so just keep asking.
Whether you will get answers is another matter, mine won't even commit to suitable painkillers, and left me with capsule pain for over a year now.
It's a pity they can't seem to envisage themselves in our position, then they might be less "high and mighty", and more sympathetic to our needs.
David ( Mr Stroppy)
Luckily, I am in no pain now. I was given codeine when I was admitted to hospital last January with ascites. Then offered paracetamol every drugs round for the two weeks I was in there. I had five different antibiotics IV during that time and discharged with no diagnosis and no follow up. Despite having had daily blood tests and various scans etc. it was my GP who diagnosed a chest infection and anaemia. How did the hospital miss all that? Recovery at home took three weeks. I couldn’t get up and down stairs and lost two stone!
So I have slowly clawed a stone back but still scrawny and my skin doesn’t fit. Even more anaemic since the gastric bleed. And some temporary brain damage due to the blood loss.
P.S. I didn’t know my consultant was going to be cute when I packed my bag. I think I was so confused that I thought I was going away for the weekend.
Love Deb x
Awww bless you Debs, you have certainly been through the mill. I think, when I'm feeling generous, that doctors are run off their feet, with too many patients, so don't have the time to fully investigate our symptoms.
But I do sometimes think that they just don't care, and it's just a job, and not a vocation as it's supposed to be. I have mild HE, so I know how disconcerting it can be when your not in charge of your thoughts and therefore, sometimes your actions.
Take Care,
David
My two weeks in January were a nightmare. I can’t understand how, after two chest X-rays, they failed to diagnose a chest infection.! Saw my consultant a couple of times and the nurses were surly and indifferent.
My four day stay in November was totally different. I saw at least two consultants each day and a couple even popped by at night to check on me. The nurses were wonderful. Some were the same ones as in January! The food was gorgeous, from the hospital’s award winning restaurant! And for two days there were student nurses from a Cambridge university. They couldn’t have been lovelier. I was allowed to use a private shower room rather than the shared one on the ward.
Fortunately I didn’t realise that I had nearly died. My family were furious that I didn’t tell them but I had no idea. I was discharged because they thought that being in familiar surroundings would help my brain recover. I was, also, told to read out loud and do plenty of crosswords. My words got muddled! I had two consultants and five young doctors round the bed when I was discharged. I felt like a princess.
So, onwards and upwards. Now just got to get my son’s spine op out of the way and get through my DVLA medical.
Thanks, Mr Stroppy!
All the best
Deb aka Mrs Opinionated!
OMG!!!! Deb's, I didn't realise how ill you were. I'm so glad you made it through. Funny, but I've been doing word games recently, to help with my dyslexia, which I've had from childhood. It was suggested by one of my friends at the Dyslexia Society, and, blow me, I think it's working, because my typing here is getting better with less faux pas's.
I still do write gobbledygook occasionally though.
Please give your Son my best wishes for a successful outcome, and beat of luck with the DVLA......they're awkward bu99er's
David
Yeah, they failed me first time and got through second time so pretty nervous. It’s a long story. I have never even had a parking ticket but someone (yes, I know who it was) phoned the DVLA and told them that I was unfit to drive.
Richard has got a displaced disc sort of thing (cervical myelopathy) and could be paralysed from the neck down if I even hug him. They are putting a plastic one in. NHS won’t pay so £11200 it is. He is 27 ffs. I am angry, upset.... You name it. And I have no financial help to offer. Can’t even visit while I can’t drive.
My youngest (16) and I suspect my husband may be dyslexic. His mum is. Is it genetic? She is severely dyslexic, he is less so. We are all born different. Makes the world go round. My son with the spinal problem has Type 1 diabetes. Diagnosed at the age of 3. My dad was/is an alcoholic. Is that genetic?
I think my brain is a little too active sometimes! I want all the answers and I want them NOW.
Oh well.
Deb. 😁😁😁
Hi Deb,
Oh crikey, why on earth won't the NHS pay for the spinal surgery? You should get your MP involved pronto, and have you contacted NICE to get their view. That is totally unacceptable, the press should be told. Did they give a reason for refusing him treatment?
Yes dyslexia can be hereditary. My Granda, Da and both my sons are dyslexic and strangely all left handed like me. I also have mild autism, which again can be linked to dyslexia, both of which means our brains are wired differently to normal people, but it does have it's advantages.
Take Care,
David
My best friend’s son has ADHD. Same age as my young ‘un. My husband used to coach their football team so we got to know Joel well. His problem was mostly with authority. My husband, Steve, always wanted to be a teacher (PE and maths) but never made the grade. He was brilliant with Joel. We just instinctively knew that we could set boundaries in our house but we are no disciplinarians. He was fine with that. I only had to speak to him firmly on one occasion and that was because of his swearing!! He never swore in our house again. But I know that he was so good at maths. He walked out of the GCSE exam and simply said that he could have got an A if he hadn’t walked out of the exam part way through. His dad probably is on the autistic spectrum as are at least three of Joel’s siblings. There are eight children! Good old religious family! Margaret turns up unannounced with a gift. She holds my hand and says a prayer. I am more spiritual than religious but she is a great comfort to me. I have known them for nearly 30 years.
As for Richard, if he waited to be seen by the NHS it would cost more in lost income than the operation will cost. He is a grafter like his big brother is. And their father (love of my life) would have worked 24 hours a day. He succumbed to acute myeloid leukaemia in 2012. Youngest is from my second husband. Are you keeping up??
Message me with your email address if you would rather keep some stuff private.
Deb
Hi Deb's,
I think it's a shame your son has to go private, but if it's the most cost effective way of doing it, then there's no alternative, sadly.
I did Ok educationally, it just took me longer than other students.
Sorry, I do have a habit of wandering off topic, so I will try to behave myself in future.
Take Care,
David
I am amazed at the knowledge some of you have about your condition/s and test results. I get absolutely zilch from my Consultant other than “this has improved” or “that is a bit worse”. He did start to tell me about “low platelets” but he stopped and said “are you on Warfarin”. Yes was my reply so then he said “oh that’s alright then”. Well, as I continue to bleed more and more every single day, and my platelets are low - but don’t ask me a figure as he wouldn’t tell me, it seems he is no longer bothered about the bleeding.
This is what I do know:-
I have bled through my mouth every day since Oct 17
I have had one session of it going on for an hour and a half in Jan this year whilst in hospital with pneumonia. Got no help. Was told to see my GP when discharged
Managed to see GP Locum 2 weeks after discharge. He did lots of blood tests where the Platelets were mentioned as a problem, but not to me.
It was recorded on my patient access portal. The GP receptionist rang me to tell me the Dr wants me to take Folic acid and D3. No mention of abnormal platelets.
Continuing to bleed every doc I see now says it must be due to Warfarin. No other treatment options mentioned. Also had a DVT in Jan in hospital.
Conundrum this - I am bleeding constantly which they say is the Warfarin. I also clot too much hence repeated DVTs. Response usually is.....”yes that is strange” “but you need to keep up with Warfarin
Endoscopy one year ago = no varices
US scan 2 months ago = no problems I was informed.
The bleeding now is getting heavier each day and has started from my bum
Had a bad fall a week ago and 3 massive bruises won’t go away.
Yes my teeth and gums have been checked but they discharged me as they couldn’t explain the cause. I’m not going anywhere else - I’ve had enough. I have Cirrhosis, Metabolic Syndrome and a host of other diagnoses they keep presenting to me but NOBODY can solve or, seemingly, treat my bleeding issue.
I am falling asleep everywhere and anywhere in the home. Thoroughly washed out, pale, weak, etc, etc.
Can’t get help now due to virus, even if I wanted to, which I don’t. I try not to let my hubby see the blood as he’s already freaked out enough!!!!!
Given your reference to all these different varices, I am now completely baffled and dismayed. Also, 2 years ago I was told my Spleen was enlarged. Now I am told it is not!!!!
So, I know you’re not medics but, as the medics don’t know anything, would anyone like to make a suggestion or hazard a guess - it will be just as valid, if not more so, than the medics!!!!!
Hi Splodge,
I have very low platelets, as you may know, but I have never been on warfarin. I do get large blood leakages under the skin that look like severe bruising, after a knock.
I, too , am on folic acid, and initially had a course of B12 injections, administered by my wife. I do get regular nosebleeds, but none from gums or bottom. I think that if platelets get dangerously low, they can give you a blood transfusion to top them up. My spleen is very enlarged at 19cms.
It's strange that you have DVT's with low platelets as you say??? I would want to know why. your constant bleeding should be sorted. My Son has diverticulitis and ulcerative colitis, and had bleeds from his bottom, and is now on meds and suppositories, which seem to help him, but it depends on where the bleed is coming from.
As you have the "Patient Access" app, you can ask for all reports and test results to be there for you to see. I had to ask for mine, as they were not there by default. The BLT questionnaire sheet will help you list your questions and concerns to your Doctor, and you can then write down his/her replies.
Hope this helps,
David
Hi David
I cannot add anything to the wonderful messages of advice and kindness you've already received above, but I can still send you a Trishy hug!
Nighty nite x
Thanks Trish 👍👍👍
Hi David,
It would be a really good idea to discuss these findings on CT with your consultant. Hopefully you can get an appointment ASAP.
Keep us posted
Warm wishes
Trust1
Thanks Rebecca,
I have an appointment on 7th April, so will be asking if this new discovery requires more looking into. Do you think I should try and get the appointment brought forward?
David
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