Post op liver biopsy pain: I am a 6... - PBCers Organization

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Post op liver biopsy pain

bei15354 profile image
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I am a 66 year old female diagnosed with PBC in 2014. I had a liver biopsy 3 days ago (my 3rd).

I was sedated for the procedure itself and did not experience pain, however as I came to in the recovery room I experienced extremely severe pain for well over 20 minutes before recovery room staff finally started to treat my pain. 

I was crying out loudly and writhing on the hospital bed. My blood pressure rose to dangerous levels and I couldn’t breathe. Some big guy came in and physically pinned me to the bed while the nurse shouted at me to breathe. I was incapable of doing so with my chest and abdomen spasming from the overwhelming pain.

The surgeon that performed the procedure finally authorized fentanyl. By then my pain was off the charts and they had to dose me a second time before the pain backed down. 

The staff claimed they’d never had a liver biopsy patient in so much pain before. Neither could they tell my why I had so much pain or why it took so long for them to treat it.

Three days after the procedure my pain is sometimes quite sharp and doesn’t seem to be related to any movement or activity. It just stabs me out of the blue. Other times it a deep heavy ache in my side that radiates up my shoulder and across my abdomen. I was told to take Tylenol which has not provided even an hour of pain relief. It’s worse than nothing. 

I have a new medical team that wants me to have a liver biopsy annually. After this last experience I am strongly inclined to decline. 

I am wondering if anyone else has had severe pain from a liver biopsy, were you able to get relief, what was it, did your medical team tell you why you were in so much pain and would you submit to another. 

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Blearyeyed profile image
Blearyeyed

Do you have any other chronic conditions that can cause you Pain?This can make a difference to how your body responds to the trauma of a biopsy, and if there are plans to give you one regularly it may be an idea to get a care plan in place prior to these surgeries discussed between your GP, Consultant, Surgeon and you taking into account this reaction or possible post biopsy issues that could be caused by any amount of invasive surgery.

I have not had a liver biopsy yet , but I have had a gall bladder removal and biopsies in the stomach , colon and oesophagus over the years.

Some felt fine , certain amount of crabby , burning pain that came and went and usually aching for a few weeks as my system healed.

One was bad , but I know that it had more to do with my Fibromyalgia and IBS and it had caused my Pain from those to flare causing a lot of spasm pain which wasn't really helped by OTC pain killers on its own.

The pain , therefore , can often be from the nerve endings near the incision site or a hypersensitivity or autoimmune / autoinflammatory reaction of the body to not liking having anything done to it. It is part of the healing process that can be quite severe to some people , especially if they also have conditions that make pain worse.

Perhaps you should discuss these symptoms with your GP over the weekend. You may benefit from a low dose of muscle relaxant or nerve medication if you are allowed them under your current medication guidelines, combined with self care , rest and Tylenol for a few weeks until your healing is well on the way.

Plenty of cool water or green tea sipped regularly through the day and light , small bland but nutritious meals can help reduce waves of pain as your body copes with trying to heal and digest at the same time. And rest will help. You can also try either well wrapped ice pack or heat , whichever gives you more relief , but don't use it over the surgery site as this will make it feel worse. Use on a part of the body near your incision that feels the most painful or tender. Often it's the effect of swelling near a surgery that can cause more pain and twinges as you heal than the cut itself.

Everyone heals at different paces so give yourself time to recover , not everyone can be back to a normal after a few days.

bei15354 profile image
bei15354 in reply to Blearyeyed

Thank you for your perspective and advice. I will definitely be speaking to my care team about my experience. I’m doubtful it will result in alterations in their procedures to accommodate an individual patient with unprecedented pain response and specialized pain management needs.

I had weeks of discomfort recovering from the previous 2 biopsies, and actually ended up in the ER a week after the first biopsy for crippling pain, per the advice of my PBC doctor. The ER was willing to prescribe a mild opiate for break-through pain. My PBC team however was unwilling to offer anything stronger than OTC Tylenol which provides no pain relief in my case, never has. Their procedures apparently don’t allow much flexibility in pain treatment.

I would entertain getting a second opinion, I just don’t know who to go to.

OdinsMom profile image
OdinsMom

I had 1 of 6 where my liver oozed blood between it and the sac. Until it reabsorbs it's extremely painful. I will say the one I had issue with we didn't stop my aspirin for a full week beforehand which probably contributed. I've had a couple since that one without issue. Hep did said it's one of the worst pains out there and ER dr wanted to do dilaudid IV which I refused (I was driving). I do not understand the purpose of a yearly biopsy, however. I was diagnosed 2007, transplant 2016, recurrent PBC 2018 and haven't had one since recurrent PBC was diagnosed.

DoxieShamrock profile image
DoxieShamrock

My liver biopsy was so painful. My experience was just like yours, but the wouldn’t give any painkillers other than Tylenol.

OdinsMom profile image
OdinsMom

I've had 6 and the only one that caused an issue was when I hadn't been off aspirin for 7 days (this was post transplant) and the liver oozed for several days. Per my hep it's one of the worst pains ever. It abated totally in about a week. What stage are you that your team would want a biopsy yearly? This seems strange to me

rderezin profile image
rderezin

I would find another specialist at different hospital and then request a referral and ask that all your tests, scans etc be sent before you meet...discuss to determine what actually happened..an annual biopsy unless your on verge of transplant is very unusual. Quarterly blood work is normal..

They can do a scan too ..but I have been end stage for 10 years and had PBS for 29 years..only 3 scans I can recall and 3 biopsies and and minor discomfort.

I definitely would get 2nd op

CCordier profile image
CCordier

I was diagnosed PBC (and Fatty Liver Disease) in early 2019 but had symptoms for several years before that. And I've never had a liver biopsy because there are alternatives nowadays. A Fibroscan accurately measures the amount of scarring (i.e., damage) in the liver. Its fast and painless. I was diagnosed by a Stanford University Medical School hepatologist and had the Fibroscan right there in the doc's office.

If you aren't seeing a hepatologist in a big city then you would probably need to be able to get to one to see an actual hepatologist and have a Fibroscan instead of a biopsy. Gastroenterologists dont know enough about PBC in my opinion. Always see a Hepatologist.

And preferably, find a Hepatologist who is a Medical School doc. This is what I do because they are the smartest docs with the most up to date medical knowledge and skill.

You can look up the Medical Schools in your state on the internet. Then, do a search for a hepatologist on their website. You may need a referral from your Primary Care Provider doc to be able to make an appointment.

Good luck

Carol

Thoreau profile image
Thoreau

I am 74 and have had PBC for 8-10 years, but have never had a liver biopsy. After reading about issues with the biopsies and finding that some doctors no longer prescribe biopsies, I have declined to subject myself to the procedure. I have had two different gastroenterologists and neither one has tried to push me into a biopsy. Instead, I have had ultrasound and a fibroscan. Fortunately my PBC is well controlled with Urso, exercise, and diet. Since I was much older when diagnosed, mine is milder. I don’t understand why a doctor would want to do one annually. So sorry for all the pain you have gone through and hope that you are feeling better.

CBCB profile image
CBCB

had a biopsy about 8 years ago, no pain no real discomfort. My Gastro feels the biopsy is a bit too invasive and prefers me to have ultrasound every six months as well as a fibroscan . I’ve had PBC for close to 20 years. I’m 70 now.

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