Hello all! I'm new to the club and not very happy about it, of course. I've been doing some reading on the web to try to get myself educated, and it seems that everyone is getting a biopsy as soon as they're diagnosed with Hepatitis C. Please correct me if I'm wrong. My doctor said the only reason she wants me to get a biopsy is because I have MS, and the MS treatment can damage the liver even more, so she wants to see how badly my liver is damaged (if at all), because if it's severe I won't be able to get treated for MS.
If my liver is "okay", then I can wait for this new drug to come out in the next couple years (forget the name of it) to treat the Hep C, because apparently there will be less side effects with this new drug. And in the meantime, I can start my MS treatment, but again, only if my liver isn't severely damaged. I just find it odd that I'm reading so many people getting the biopsy after diagnosis, but mine is only because of the MS treatment, and she said exactly that. From what I've been reading, the biopsy should be done no matter what - to find out if there's any damage, how severe, ect. Again, correct me if I'm wrong.
My apologies for getting off-topic because I really came here to find out people's experience with this biopsy, and I guess I'm venting a bit because if my doctor isn't doing her job like I'm suspecting, then I need to move on and find a new one. Anyway, I've known about the Hep since September and the biopsy was scheduled last month, but I panicked and didn't get it done. I feel like it's been SO long and I'm SO angry that I let it happen, and I should've asked for advice along time ago, but I'm only human (embarrassed, scared, you name it!) So, with all this being said, can you please tell me your experiences with this liver biopsy, how much pain you were in, how you felt the next day, ect. I'm hoping to hear "it was a piece of cake" (yeah, right, lol) from the majority of people who reply. If there's anything else you think I should know, please fill me in. Thanks in advance!
In all honestly I think you will hear that it was a piece of cake form most people. For me the worse part, ( besides the worry before having it done) was the 3 hours they made me wait laying still after words before I could go home.... We all go through this and then we laugh because we felt stupid after words. Good luck to you with your MS and Hep C.
Welcome! You do need a biopsy to find out the condition of your liver. You have Hepatitis C and you want to know the stage to determine if you can wait for future treatment. Don't be scared of a liver biopsy. I think because its a
"LIVER BIOPSY" it must be a difficult procedure. It's not and you walk out feeling relatively fine. Your told to take it easy for a day and you go back to doing what ever it was you were doing before you had a liver biopsy. I have had a few and found it extremely un eventful. I experience no pain either.
Don't be scared! I think your more scared of the unknown and finding exactly where you stand my not be that bad. I would want to know as soon as possible....so get that liver biopsy :). Your doing a great job of educating yourself about Hepatitis C. That's really good to see and the key to getting the best care possible. I'm sure you will getting lots of additional comments and support. Let us know the outcome of your biopsy :).
Are you being treated by an MS specialist, gastroenterologist or hepatologist? Not sure who is the priority disease manager in your case although you do need a liver biopsy to have an accurate evaluation of your livers condition. Grit your teeth and do it. They give you pain meds. In my case, I am a wuss. It hurt badly, felt like my insides were being sucked up through that needle. You have to lie still also, it overall sucked. For weeks after I felt like I had a hole punched through my side. It was only extremely painful that first hour or so for me. Everyone is different. Many have NO pain. Many women also give birth with no pain so it's hard to say how you'll react, but you HAVE to do it. Tell doctor you are nervous and afraid of pain, I'm sure they'll address it and make sure you are as comfortable as can be.
For my husband, it was no big deal. He was sedated, fell asleep, woke up to follow directions, fell right back asleep, after the procedure was finished he had to stay on one side for an hour or two, but he slept the entire time.
For me, it was more stressful the first time, but less stressful the second time. Tell whoever brings you to bring some snacks, their Ipod and a good book. :)
Thank you to all who have commented so far. It means so much to me! Having panic disorder (which I forgot to mention in my profile) has always interfered in my life and is one controlling SOB. I really wish I had done this sooner, and even though the majority of people (so far) said this was a piece of cake, I have to address the person who said it hurt terribly, so I can get an understanding in why (compared to the others), and also to hopefully ease my mind a bit.
mckansas, again, thank you so much for stopping by and telling me your story. First, to answer your questions, I'm seeing both, an MS Specialist and a Gastroenterology Liver Specialist. You said they'll give me pain meds, but I'm already on very high doses of narcotics through my pain specialist, and I highly doubt they'll give me anything in addition to that, even if my pain has worsened. The reason I say that is because I'm always in and out of the hospital for an MS flare-up, or some other condition, and the hospital doctors always keep me on the same dose of meds as I'm on at home. It's upsetting because if my pain has worsened, you would think they'd increase them temporarily while I'm there, but it doesn't happen that way for me.
I'm curious as to why you went through so much pain compared to the others. I understand we're all different, but I was told by my liver specialist that the liver has no nerve endings so it shouldn't hurt, but there are several layers of skin and fat to go through, as well as muscle before they get to the liver. I know they'll be numbing the area before the biopsy, but I'm wondering if you have any other conditions that could've caused you more pain, because I have a feeling and fear that's gonna happen to me due to having several illnesses that cause chronic pain, especially in the muscles and even my skin (MS related).
If you don't mind me asking, do you have anything similar, or any other condition that could've caused you to have more pain than the average person, or do you think you're just one of those people who are hypersensitive? (hoping that doesn't offend you)
Laying on my side for 3 hours straight is definitely gonna hurt because I have to rotate my body every 2 hours during the night due to my muscular problems, but I'm more worried about what's being injected through my skin into my liver. It makes me shiver just thinking about it! One thing's for sure, I'm definitely not gonna be looking at any of the equipment around me! I'll probably pass out! Lol!
Strange, if my doctor said the liver has no nerve endings, which is the reason why the biopsy won't hurt (SHE said), then why did my right side hurt when it was pressed on when I became acute in September? Apparently my liver was inflamed and if the liver has no nerve endings, then why did it hurt so bad when the doctors pressed on it?? Hmm.
I have had at least 8 biopsies - I cannot really remember how many I've had. I received a liver transplant in June 2000 and I had some HCV recurrence and some acute rejection issues which necessitated frequent biopsies and that's why I don't remember the exact number. I'd be lying in my hospital room and a doctor would come in with a tray with some needles on it and proceed to take a sample. Really, they were nothing and those bedside biopsies were all without any imaging guidance. I also have had ultra-sound guided biopsies and they were less than nothing. They were a walk in the park but I do agree that lying on your side for 2 to 3 hours after the procedure to insure there was no bleeding was inconvenient, to say the least. I will tell you this. Before you become accustomed to having these types of procedures the worst part is the anticipation of the event. Once you get used to that the worst part by far is the anxiety of waiting for the results. My advice is to put it out of your mind. Like a horseback riding instructor once told me - it can't be that hard because too many people do it. You'll be fine and very few people ever report any significant pain. It's no big thing - believe me.
The pain you probably felt was due to your liver being swollen and pressing against the Glisson's Capsule which surrounds and encases the liver and DOES have nerves. This is common with liver disease.
I've had 4 biopsies. First one hurt because the tech radiologist did three numbing medication shots that hurt, then the hepatologist came in and inserted the needle really hard, didn't hurt but hurt later like I was punched in the side with fist. I had no meds before and given vicoden pain med after.
2nd was horrible. A radiologist did it no doctor(again did two numbing shots that hurt, then when taking the sample hit my diaphragm and put me in spasm where I couldn't get my breath and really sharp pain. They rushed me in for xray to make sure he didn't puncture my lung. No premeds and given pain meds at end that I had to later fill at drug store while numbing meds were warring off. .
The 3rd one I insisted on the head hepatologist. told my horrible stories so they did have Dr. Robert Gish do the procedure. He gave me IV and relaxing meds to start. Did on long numbing shot(didn't hurt) and then did the needle biopsy. I had a prefilled prescription of pain meds he called in the day before the procedure. I didn't have to get it filled after. I didn't feel a thing and had a very easy stress free experience.
I had to have the 4th one to get in Gilead trial. Couldn't get the head hepatologist, had to use who Gilead sends for procedure, but was told this person was so experienced he was one of the best and almost painless. So I sucked it up and went. They gave me big dose of Ativan 1 hour prior to procedure to take orally. Then one long numbing shot with little discomfort, the Ativan really relaxes you and takes away anxiety. I didn't feel the long needle and Dr was so gentle. I was given a couple of yellow Norco pain pills to take home. No problem and easy experience.
I wish I read more about biopsy before I had my first experience. Now I know what worked for me and will never be afraid again. It was people on this sight that told me to ask for hepatologist and sedative before getting my 3rd biopsy. I was originally told my first times, NO MEDS because you must be totally alert to stay still and hold your breath. This was totally untrue, one can be slightly medicated and relaxed, stay still and hold ones breath.
Get the biopsy. This will help the doctor be able to know how to plan treatment. Ask questions about who is doing biopsy, what is the procedure. What sedative will you be getting in advance. Have after pain medication prescription filled in advance or are they going to give you something to walk out with. Then this procedure is a cake walk and nothing to fear.
hello, i picked up hep c in the 60s and i have had ms for as long as i can remember. as you have found out the two diseases dont get along. the bx is a must. as your dr said,"ms tx can be risky for your liver. the very high dose prednisone and immunosupressants, interferon beta, and muscle relaxers are all terrible for your liver. yeah! i was on interferon beta for 4 years. big mistake!! ms is a auto immune disorder that is exacerbated by anything viral or bacterial. so the hep c drives the ms disability.
i just finished tx for hep c and i have been clear of the virus for many months. i will have another bx after my last v/l nest week. i started tx as a 3-4f. i am hoping for a 2-3f on my next bx. then i get to start ms tx. i am in the progressive stage of ms(advanced) and need to treat NOW.
ill let you know how things proress and you let me know about your bx. btw, my biopsies were a piece of cake. food for thought; you dont need a driver for a liver biopsy. best of luck in your journey to good health. barry
First, my sincere apologies for not getting back to the thread to thank everyone and give you an update. So thank you! Your lengthy, detailed replies tell me so much, not only about the biopsy, but that you genuinely care and that really means the world to me.
Second, the update: As embarrassing as it is, there's not much of an update because I didn't get it done. Its not that I chickened out, but I panicked and didn't go. Go easy on me. I have a severe case of panic disorder thats been controlling my life for the last 17 years, and I hate every minute of it, that I wish I wasn't inside my skin at times. So, because I let this go for 6 months, I can't use the order (script) for the biopsy that I still have at home from all those months ago. I have to go back in to see the doc and get a new script and probably new blood work.
Also, to those who asked who's taking of the Hep C and MS, they are separate doctors. For the Hep, I've been seeing a physicians assistant, but there's roughly 6 doctors in the office who are liver specialists and gastroenterologists. For the MS, I see an MS Specialist.
Several of you brought up anxiety medication before the procedure and pain medication after the procedure.
I wasn't finished my comment, so please let me finish before replying in my next post. I feel like an idiot but I'm using my phone and the words on the screen are so small, that I pressed "post comment" by accident when I really wanted to shift. Lol!
So, back to the anxiety medication before the procedure and pain medication after the procedure: I thought I mentioned in one of my comments, but I'm already on high doses of pain medication, so I highly doubt they're going to give me anything additional. I also take 1mg of klonopin which is prescribed at 3 times a day, so again, I believe the same would apply. I'll probably just take an extra pill of each without telling them, but only if I feel uncomfortable, but I'm a 150% sure that I'll need that extra anxiety pill before I go. Lol! The fear is bad! I'm awfully proud of myself, though. I was in the hospital 2 weeks ago for almost a week because I had an infection somewhere in my body and I was on high doses of antibiotics, and they wanted to rule out meningitis, and in order to do that I had to do a lumbar puncture. Eeeek! This is something I did 5 years ago due to having multiple sclerosis and I was scared to death then, so it was even worse now, but I'm happy to report that I did it!!
So, because I was in the hospital, I found out that my liver enzymes (or whatever they're called) were elevated big time and that scared me, so I gotta do this. There's no if, ands or buts about it! My appointment is on October 2nd to see the PA and the nurse will be making the appointment for the biopsy while I'm there. Thanks for reading and caring. Again, your kind words are appreciated very much. XO XO XO
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