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Old 04-08-2011, 05:58 PM   #1
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cascott1980 HB User
The FNH "Ordeal"

Alrighty. I'm a pretty darn good researcher when it comes to finding info about medical stuff. However, I am here because quite frankly, I'm just plain ****** and miserable, and am happy to see not the only one with this "thing". The down and dirty about FNH (from my research) and then I'll tell you my story:

FNH are mostly benign, occasionally and more often rarely they happen to be ademo's. They are recognized by a central scar on MRI, CT and/or triple phase CT. The reson docs say they do not cause pain is because the liver itself has no nerves...and nerves is what causes pain. However - the size and location of the tumor(s) is important when compared to the symptoms of the patient. (My story will be a perfect example of that particular item). FNH are really no big deal unless they are causing symptoms, which would include nausea, RUQ and/or back pain, sometimes abdominal pain, and less often shortness of breath on exertion. Treatment for symptomatic tumors will depend on the doc and how conservative/aggressive/knowledgable he is re: the diagnosis. From monitoring to liver resection.

So now, me:

Gallbladder out in 2004. During that diagnostic drama, a CT showed a 3cm hemangioma. The ultrasound 3 months later said it was artifact. Didn't care - when they took out my GB I felt wonderful. Until 12/28/10. Started having alot of RUQ pain and nausea. First CT showed 2 liver masses with suggestions for more tests. Triple phase CT (which is the same except for different dye and timeing so they can see the blood flow through the masses for diagnosis) showed 3 tumors; 1 cm hemangioma on the front right lobe, 1cm hemangioma on the posterior (back) right lobe, and 1 whopping 5cm "possible" FNH on the upper dome of my liver. It has a central scar. AFP labs were normal but liver blood tests abnormal.

GI doc did esophogeal ultrasound to rule out left ovr stones from the surgery. Clean. That doc recommended a lung CT because the complaint of pain was higher than what he would like. That radiologist noted a large mass on the upper dome of my liver, compared it the triple-CT and said he could not rule out neoplasm (the bad stuff) but thought it was benign. The Abdominal MRI after that showed a right lobe 5 cm mass in the upper posterior dome of my liver, "probably indicitive of FNH. GI doc put me on narcotic pain meds for 3 weeks and nausea meds until I could see the hepatologist at KU Med.

Saw him yesterday, and was disappointed in my own profession. My complaints were: RUQ and mostly back pain that keeps getting worse - like a dull, football is in there pain that gets worse when I excercise and is starting to hurt when I sit. Just feels like there is not enough room. I conctantly ask my husband to go get a spoon and just dig it out. I can't eat but a few bites until I am stuffed full, have lost 27 pounds since August, and am starting to get tired physically.

His initial response was: you are thin and thin women may have pain when they eat too much. I felt like kicking him in the hoo-ha til he choked. then he said these tumors don't hurt so...then he pulled up my MRI. And said, "Oh, that's a pretty sizable tumor. and it's located in the posterior very upper part of your liver. that will cause pain by pressin gon the capsule. you need to see a surgeon. Your appointment is in 3-4 weeks. Oh and by the way, since I don't think you are n that much pain, I do not prescribe narcotics or pain medicine for this type of thing. I'm a liver doctor, so I don't write for those drugs."

I walked out in tears. Not only did he dismiss the fact that I hurt, but he chose to shove me off to a surgeon and not manage the sypmtoms. Myhusband got mad and called his nurse, twice. She finally called ME back and I gave her everything I had. I explained that I have been in healthcare for 20 years and that I could not believe that a teaching univesity did not have a pain protocol for solid organ pain. She apologized. 20 minutes later she called me back and said that the surgeon saw my labs from the day before, she wouldn't tell me what they were, and that they would present me at rounds on monday morning and the surgeon wants to see me at 2pm.

So here I am. The surgeon will present me two options, liver resection, or nothing and repeat testing, but probably resection. Which at this point I'm ready do myself with a blasted kitchen knife because I it hurts so bad.

So. If the surgeon gives me the same crap, I am going somewhere else and find someone who will manage the symptoms until they figure out how to fix it.

There. I feel better. If ANYONE has any input about this I would appreciate it. Occasionally I feel like I am just going crazy and it's all in my head. Then I wake up in the middle of the night in tears and think differently. I am 5"7 and now weight 118 pounds. It makes sense to me that solid organ pain (or visceral pain) could absolutely be caused by a tennis ball in the back of my liver...kind of like when someone has bulging disc in their spinal cord and has pain down their leg...why is that so hard to wrap their mind around???

Last edited by Administrator; 06-27-2011 at 08:57 PM. Reason: Read the rules please

 
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Old 04-25-2011, 07:52 PM   #2
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dmthom HB User
Re: The FNH "Ordeal"

Yes, that's how I feel - and constant waves of nausea. You're not crazy. And I want it out, too, NOW... eventhough most of these "cases" are fine to be left alone. I hope you get the response you are looking for from the surgeon- there are definitely some great doctors out there.

Last edited by Administrator; 06-27-2011 at 10:45 PM.

 
Old 07-16-2011, 05:00 AM   #3
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asmarsh HB User
Re: The FNH "Ordeal"

Hello Cascott --

I am curious to know how you are doing and what has transpired since you posted this in April.

Your situation sounds very similar to mine, and I am looking for answers.

After losing 15 lbs in 6 mos (I am 5' 4", used to weigh 129 and am down to 114 now), complaining of back pain and chest pain ... my primary finally stopped looking at me like I was a hypochondriac and sent me for testing.

I have 2 liver tumors -- one 6.2 cm on the upper dome, diagnosed as FNH, and a smaller 2.3 cm undiagnosed tumor in the lower right lobe. They "think" the little one is FNH as well, but have not been able to get a good look at, nor was a needle biopsy successful.

I just had a PET scan this week that was negative for any malignancy, so I am assuming now we will be moving on to see how we can figure out whether the little one is an adenoma or an FNH.

Either way -- I have pain! The worst is around 3-4a, only getting better when I finally get out of bed. Abdominal and back pain (right under my right shoulder blade). Now, I am having some referred pain up into the shoulder, and my chest pain is pretty bad.

I am being treated by a great group -- LifeLink Transplant group at Tampa General Hospital in FL, so I feel like I am in good hands (I mean, they see the absolute worst of the worst when it comes to liver issues).

Please let me know how you are doing and what ended up happening with your pain and hopefully what your resolution with the FHN has been.

Thank you!
Allison

 
Old 07-19-2011, 04:52 PM   #4
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cascott1980 HB User
Re: The FNH "Ordeal"

Oh dear babe - i feel for you! And I know what it's like to have docs look at you like you're crazy. They always told me "those types of tumors are not supposed to hurt". Um, I'm here to tell ya - they do!! Here is what happened with me; hopefully it will give you enough info to go to the physicians with and put your foot down and scream. LOL.

I saw a hematologist the first week of April, who said the same thing as I wrote above, but he was at a teaching university and said that he would present my diagnosis and symptoms at rounds that week. That was on a Thursday. On Friday afternoon, his nurse called me back and said that the transplant surgeon saw my CT's, listened to what my symptoms were (by this time I had lost 32 pounds since August. I'm 5'7" and weighed 118), and wanted to see me first thing that next Monday. My husband I met with Dr. Nawabi, a transplant surgeon at KU. He told me that my FNH was in the upper dome of my liver towards the back, and the reason there was pain was because it was pressing up against the capsule and my diaphragm. I had awful - awful - back pain that went up into my shoulder; constantly. It got worse when I walked up the stairs or took a deep breath in and also hurt in my chest, just underneath my boob. Dr. Nawabi said "of course it hurts, and the only way to fix it is to take it out". Because the tumor had grown so large ablation was not a choice, only open resection.

So that Friday (April 15, 2011) I had a liver resection of the right lobe of my liver. Directly after the surgery, the surgeon told my husband in the waiting area that he had to scrape against my hepatic artery, and almost did not do the surgery because of that - it was a tedious, four hour long surgery. He said that if I would have waited much longer, that he wouldn't have been able to take it out for concern that he would have injured my hepatic artery and that would have killed me! Anyway, it was a big, big surgery, and I went home four days later with a JP drain. I had a bile leak, and the drain was to drain the bile. Most of the time a small bile leak heals on its own and that's what they were hoping for. A week later I was in the ER with so much pain, and nausea and a fever - I was septic from the bile leak. The leak was unavoidable because of where and how big the tumor was; from what I understand about the size of the baseball.

Anyway, they put a biliary stent in and left there until June 20th, then took it out (this was done by ERCP, not open surgery). And now, I am marvelous. No pain, no nausea, nothing. Labs are perfect, and aside from still being underweight, I feel wonderful.

I hope this helps you and doesn't freak you out. The transplant surgeon said that he had performed that same resection for FNH 8 times prior to me just this year, so as uncommon as people think it is, it's really not.

Put your foot down and tell these docs that this IS an issue for you, and they are resected all the time. :-)

Good luck to you!

Cindy

 
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asmarsh (08-01-2011)
Old 08-01-2011, 10:43 AM   #5
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asmarsh HB User
Re: The FNH "Ordeal"

Thank you Cindy, for checking back to this post and writing me a note. Very encouraging!

The Group of Radiologists and surgeons at LifeLink all reviewed my most recent PET scan, and past MRI's, and are wanting to do another MRI in about 5 months (mostly to try to identify the little tumor that is being shy -- just glad we know it is Benign!) And to keep an eye on the larger tumor that has been identified as an FNH.

My liver surgeon wrote me an Rx for pain though! YAY! Mine is not as debilitating as what you describe .. but has become constant. Mostly the chest pain and even pain swallowing. The Dr. thinks the tumor is pressing against the main nerve in the diaphragm which is causing all sorts of referred pain.

He also told me to come in immediately if my symptoms change/become worse ... and we will do an MRI then to see what's up.

I think you made a good point about not waiting until things get to large and out-of-hand. You WERE lucky with your timing, and I am happy for that for you!!

So glad you are feeling well and are not in pain.

Take good care,
Allison

 
Old 03-24-2012, 07:37 PM   #6
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brittneybruce HB User
Re: The FNH "Ordeal"

i have a meningioma (brain tumor) and the er doctor came in said u have a brain tumor n walked out and sent a nurse in to send me home n gave me some pain meds to due me till i found a doctor. i found a doctor n she said she dont give pain meds for a lil ol headach because its just a headach. note its causeing my brain to push to the left and down so its putting pressure on my spinal cord and left eye and ear n tempal and feels like my eye is going to jst pop out well she said im refuring u to uva (hospital in va) to a surgeon and ended up giving me pain meds with some steriods and it took them a week to just call n scedual an mri at uva and wont seceduel an apotinment with the nerosurgeon till after thats done and i live 8 hours from there and is about 100 to get there n 100 to get back and they want me to make more than 1 trip and i have no medicade or anything so i gues we are in the same boat lol good luck

 
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