Live biopsy gone wrong : Hi all, I went... - British Liver Trust

British Liver Trust

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Live biopsy gone wrong

Buddy73 profile image

Hi all, I went in for a routine liver biopsy a few weeks ago, they went in through my chest and the second they took the sample my whole upper body was flooded with unbearable pain, I was given phentonyl , and taken back to the ward where I had to lie flat for 6 hours I was kept in overnight and monitored , I was discharged the following day and within a few hours of being home the pain returned and I was rushed back in and stayed for a further 4 days before being discharged , since then I have had terrible itching but have been prescribed so for this , and now I am having terrible muscle cramps in my feet and toes, and still I have not received the results from my biopsy , I am so tired all the time and totally fed up, the doctor has been in touch with hospital so I’m hoping the results will be available soon , the consultant did say that they may be able to get me on a drug trial , I’m prepared to try anything , I just want my life back

35 Replies
Trust1 profile image
Trust1Administrator

Hi Buddy73

We are sorry to read how ill you feel.

Maybe you could try to contact your GP again and let them know about your symptoms and see if they can access your biopsy results?

Are you due to see your liver specialist soon? It may be a good idea to discuss this with your GP and get an appointment arranged ASAP?

Best wishes

Trust1

Buddy73 profile image
Buddy73 in reply to Trust1

Hi, thanks for taking the time to reply, it was the specialist who arranged for the biopsy and this was done as my bloods don’t reflect the level of damage to my liver , I have phoned again today as neither me nor my gp has heard anything yet, I must admit it so stressful as my fibroscan has jumped from 19.5 to 28 in just 2 weeks , I hope I hear soon

Trust1 profile image
Trust1Administrator in reply to Buddy73

It must be stressful but try not to get too worried. Fibroscan is very useful, but should not be the only diagnostic test used in a diagnosis. Hopefully the biopsy will provide more information and your specialist can sit down with you with a plan.

A biopsy is likely to be far more accurate than a fibroscan. Like you I had normal bloods and fibroscan tests that went from fatty liver to cirrhosis in a short time. On your previous post you mentioned RA, which causes inflammation big time. it transpired that after a arfi scan I do not have fibrosis, severe fibrosis or cirrhosis. In some people fibroscans do not give correct readings. I was on Methotrexate for 7 years and it is linked to potential liver damage in 2/3% of people. I only got my results for the arfi in June. I do have a few forms of arthritis, fibromyalgia is very similar to RA in symptoms except joints dont swell. I have the same problems as you, cramp and pins and needles in my feet and of course fatigue, Now I know I only have fatty liver my GP prescribed me quinine for the cramps. I also have psoriasis and Psoritic arthritis. The waiting for results was difficult, , a biopsy of any type does take quite a while to be completed. Its natural to worry, but I took comfort in the fact I was finally being tested in several ways. You as already stated,won't be not just given the results but also a plan to move forward with. Even when I was told it was cirrhosis I felt relieved to have a diagnosis. My consultant obviously wasn't totally convinced hence the arfi. If your GP gave you the results you wouldnt expect a GP to know in detail what the results mean for you as an inividual. If your tired rest, try and chill by keeping busy, your mind if not your body. Hazelxx

Bootandall profile image
Bootandall in reply to Radnor

What is an arfi scan?

Radnor profile image
Radnor in reply to Bootandall

I said that lol. Its Acoustic Radiation Force Impulse Imaging. Unlike a fibroscan the liver can be seen o screen. This ensures that all the impulses are from the liver only . Thhen these are calculated to dfine the state of the liver. It is only for people who have Non alccohol liver disease. . There is a strict criteria for this, eg BMI under 30, clear bloods but fibroscan indicating cirrhosis etc. Consultant radiographer has to be qualified to perform the test, I discovered that the one who did mine was the person who did the presentation to NICE.

Bootandall profile image
Bootandall in reply to Radnor

Thank you for taking the time to answer my question! My BMI is currently too high, great incentive to reduce as I need answers lol👍😁

in reply to Radnor

Thank you to boot for asking that - I thought the same but didn’t want to ask 😳. Thanks Hazel for that very clear answer! Just have to try and remember it now! Another acronym. Way back when Katie Ayrshire started a brilliant Glossary. I wish it could have been “pinned” (is that the right word?) to this forum so it was easy to access!

Miles

Bootandall profile image
Bootandall in reply to

Great idea Silo,

I'm pretty sure there is that option at the top of the page! 🤔😀👍

in reply to Bootandall

I wish my brain was a silo.....

alfredthegreat profile image
alfredthegreat in reply to

A Silo, Pilo Milo ? :-) :-)

in reply to alfredthegreat

Holds a lot of stuff - unlike my brain nowadays ☹️

in reply to alfredthegreat

Lol! 😂

in reply to

Im not great with the internet terminology but i think "pinned" is specifically for pinterest Milo. Tagged I think is the general term? I could be wrong though.

Bootandall profile image
Bootandall in reply to

If you scroll to the top of the page and select Posts, you will see several options, one of these is Pinned

Nevermind. I clicked on Pinned😏 it's admin. links to our hosting sites. Nice! Thanks. 👍😊

It's called a Bookmark! 😁 I don't think that's an option, but I hope to be wrong.

in reply to Bootandall

Hi boot

I’ll do some digging on this as well. I do know bookmarks but I use an iPad so I’m not sure. Thanks!

in reply to

I’ll do some digging! Thanks Phoenix 👍

Radnor profile image
Radnor in reply to Radnor

My bmi was also too high when I saw the Proffesor . He told me to lose some more weight, My fibroscan said cirrhosis. Said to go low carb. Even with cirhosis loing liver fat helps. It was 3 weeks before Christmas ! I asked myself one question . Do you want to see your granddaughter graduate, get married, and be a great Nan? He did say if I did he would expect to see me around in 20 years! By March my BMI was down to 28.5! It didnt help that I have shrunk by 2 3/4 inches!Another joy of getting older lol. I had no idea about ARFI, My daughter thought the Prof. was rude! I saw it that he had thrown down a gauntlet. My brain said I'll show you mate! Never did I question about having cirrhosis. I thought the ARFI was going to stage it. I saw a different consultant , who put me forward for this. he didnt mention any thing about what this test could actually reveal. It was a Nurse Practitioner who gave me the results, Losing weight has never had such an amazing impact . I was pleased I had dropped 2/3 dress sizes but the gift of being told I have fatty liver only is a life changer .

in reply to Radnor

I remember us talking about this test a few months back Hazel. But can't quite remember why its wasnt useful for alcoholic liver disease. Do you remember why?

Laura009 profile image
Laura009 in reply to

Yes I'd like to know that too

Hi Buddy73,

I have never heard of having a liver biopsy done through the chest, but I presume this is because of other conditions you may have. I had mine done through the right side of my ribs. It was fine when they first went in, but the specialist couldn't find the liver and had to get his boss to do the biopsy, all of which took about 30-45 minutes, by which time the local had worn off and then taking the biopsy on top of that, was a bit much.

I was writhing in agony when I came out, I scared a lot of the patients going in :)...the staff gave me Codeine for the pain, which had absolutely no effect on me, but I found putting pressure against the wound and mattress was a phenomenal success. (I try not to take painpills as much as possible to avoid addiction and to make them work more effectively when I most need them.)

After the operation, they made me stay in hospital for a good 4 hours and then provided a wheel chair and sent me home in a taxi.

Although I have dreadful itching on a daily basis, it is not as a result of the biopsy, it is because of the toxins in my liver not being cleared properly. I have been prescribed bottles of Diprobase. GP seems to think it is all in my mind. Then ofc, , since moving house, and having to change my GP, that stupid catchement area thing, I have ended up with a GP surgery that have no specialists in liver cirrhosis, and ignore it completely, they don't even ask for regular liver tests.

I found that after my biospy in took 2 weeks to get the results, very frustrating, was being left out of the loop for communications between my GP and the consultants.

I can understand your reluctance to have another biopsy, but until they diagnose what is wrong, biopsy is supposed to be the best, fibroscan is only supposed to be done, after liver biopsy, and then for monitoring, if I understand correctly. I haven't actually found a hospital that has fibroscan equipment yet. At my local hospital they do the 6 monthly ultrasounds, with the gel and screen by screen shots of the liver. That can be uncomfortable when they put too much pressure on the liver, but it in no way replaces the initial liver bopspy.

I'm not a very good patient anymore, the nurse in the liver clinic keeps trying to book me in for routine, biopsies and endoscopies, former to measure liver damage, latter to measure varices, but once was enough for me. That and she is always negative about everything, I have agreed with my consultant not to go to liver clinic anymore.

Buddy73 profile image
Buddy73 in reply to Fides

Hi

Thanks for taking the time to reply , the consultant I saw back on the ward was very surprised they had gone in through the chest , but I was in so much pain and I didn’t question this , with hindsight I wish I had , I have been prescribed powder , which is normally prescribed for lowering cholesterol, I can’t remember the name

Of them but they really work, I am also getting my magnesium levels checked at the doctor this week as I have been getting really bad cramps in my hands and feet, my hospital has the fibroscan machine it just feels like someone pinging you when they use it doesn’t hurt at all, but in 2 weeks my fibroscan results had jumped from 19.5 to 28, the doctor says the biopsy results are now available but they haven’t disclosed them to my gp all they said was they needed to be discussed in clinic with me , I’m still waiting to hear when , it’s scary and stressful and I just want to know as they keep telling me my bloods don’t reflect the amount of damage to my liver , so I am no further forward .

Hi, Buddy - Your biopsy experience sounds fairly dreadful and I am sorry you had to go through that. Anything but routine, right? Was your’s a Trans-jugular biopsy? If so, do you know why they entered through your chest instead of your neck? Was it a mistake of some sort? I really hope you get your results soon and that they are favorable. The waiting can indeed be very stressful. Take care of yourself and keep us posted on how you get along. Best wishes.

Hi, and no one has told me why they went in through my chest apart from saying “oh they must have thought it was the best way” and I felt so awful I didn’t even ask why they had done it that way, and no it wasn’t the jugular one, I really appreciate the replies I have , it makes me feel I’m not alone and it does help, so thank you

You are so welcome, Buddy, and I know from experience how helpful it is to not feel alone. So, your’s was a regular biopsy, but instead of entering near the liver, they chose your chest. I am sure there was some reason for this but it doesn’t take away from all the pain you went through subsequently. I’m keeping my fingers crossed that you get some good results.

Hey Buddy. I apologize I realized I didn't address your initial post. Your post was made 6 days ago now. Have you found any of the pains cramps and itching arw at all decreasing in severity? Or is it still present or wavering up and down?

Its horrible to deal with that and to add insult to injury the results are still not in on the biopsy.

Please let us know what comes of this all soon.

Im not the praying kind but my thoughts are with you. Im going to follow this post if you don't mind to keep up in the know of how you are as you update it.

Btw as fibroscans can be by nature the jump in KPA could have to do with other factors not related directly to meaning you have more damage. When fibroscans err. They err on the highside almost always.

Hang in there my friend. as AmericanDemocrat has said your not alone? 🙂

Buddy73 profile image
Buddy73 in reply to

Thank you so much , I have the doctor tomorrow to check my magnesium levels and currently get my bloods done every 2 weeks as my enzyme levels have been high, it makes me feel so much better being able to speak about what is going on, the cramps are still bad and now I have all over joint pain it feels like having the flu, I’m just exhausted with it all, x

Your very welcome. It can feel less daunting to go through to have others who can relate, this I know. Please let us know what they say tom ? Hopefully the flu like symptoms will subside soon for you at the very least.

Hi, Buddy - I am just checking in to see if you received your biopsy results yet? Sending good vibes ... 🌺

Unfortunately I’m still waiting !!

Gosh, this is a long wait - sorry! I will wait for you to update us once you get the news. Best wishes.

I finally heard from the hospital today so have an appointment for 7 August to get biopsy results

Wishing you all the best and do keep us updated. 🌺

Hello, Buddy - Today is 7 August, and I am hoping you received good results from your biopsy appointment today? Please let us know if we can help, or feel free to PM me anytime. All the best ...

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