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Old 11-08-2008, 07:08 PM   #1
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Focal Nodular Hyperplasia - Symptoms?

Hello, I recently found out that I have a small (1.3cm) arterial enhancing lesion on the caudal lobe of my liver. The lesion was found while having and MRI of my abdomen and pelvis due to abnormal menstrual periods. The report stated due to no history of liver disease and assuming metastatic disease is not suspected, it is most likely FNH and to follow up in 3-4 months.

I would like to see if there is a pattern of symptoms/diagnosis present in people diagnosed with FNH. I am also curious to find out if H.Pylori bacteria might lead to FNH and if people diagnosed with FNH also have IBS and/or menstrual problems. I have not been diagnosed with H. Pylori, but am considering being tested.

Has anyone with FNH also been diagnosed with H. Pylori?

Can you please respond with a list of symptoms you have (whether or not you feel it is related to the FNH).

Here are mine:

Past 3 years menstrual problems - irregular cycles, painful periods, heavy periods, Severe PMS, Bloating, Gas, IBS, weight gain, recurrent kidney stones in right kidney, breaking out on chest, fatigue, decreased mental alertness, random burping

Would love to hear any feedback. I am trying to educate myself on this condition. Knowledge is Power!!! I have worked in the medical field for the past 15 years, and although I respect doctors I know that they are also human and running a business in which the all mighty dollar comes first. We as patients, need to take an aggressive role in our own healthcare and sometimes must push through and take a firm hand in our own care and follow up.

 
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Old 11-10-2008, 02:12 AM   #2
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Re: Focal Nodular Hyperplasia - Symptoms?

I have been diagnosed with a 4cm lesion earlier this year; I was admitted to hospital with chest pains and heart and lungs were fine but the lesion was seen on CT scan. further scans and the diagnosis is a little vague, it is either FNH or adenoma and for the moment the liver specialist believes it is an FNH and will review again in one year ( they seem to be more conservative in their treatment of these lesions in the UK)It has all been a bit scary though as I have a very strong family history of cancers. I was seen by gastro enterologist who performed gastroscopy, he found severe inflammation and I tested positive for H Pylori. I have been treated for the H pylori but had recurrence of symptoms and have had a breath test which I will find out result of next week ( I have seen a test on a video site on the internet that gives instant results, but we are obviously behind the times here, or the test I had was much cheaper!). At that time they found that I had low oxygen levels (93%) and I am waiting to see a respiratory specialist too.( never seen so many specialists in one year!) I don't feel that the liver lesion has any relation to the H pylori, and understood that these liver lesions are more related to contraceptive pill usage ( although I haven't taken the pill for over 15 years).
Menstrual symptoms are interesting as I am older (51) but had menorrhagia for several years before having a microwave endometrial ablation about three years ago and have been very pleased with the results. I have read that some women have symptoms of pain/discomfort in their livers at the time of menstruation, presumably a hormone link there somewhere?Symptoms that I have had- other than the chest pain I have aches in my lower lungs especially on the right side behind the rib cage. Symptoms related to the H pylori- bloating, reflux, chest pain/ache.

I think you're right to find out as much as you can about these things- it is after all your body and you should try to look after it as best you can, alIthough I think the Drs hate it when we know too much

 
Old 11-10-2008, 08:56 PM   #3
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Re: Focal Nodular Hyperplasia - Symptoms?

Dear McRegnal87,

Thank you for your response. Yes, I would say your doctor's are being very conservative. I think a year is a long time to wait to get that checked again. Hmmmmm, your o2 sat is low too. I wonder what is causing that. Please keep me updated on what you find out.

I am still on my quest...I think that although I have not taken hormones regularly in the past, that I may have been in a state of estrogen dominance and maybe this is what causd the FNH. I think the liver filters out or breaks down the hormones. Our bodies are amazing!!!! I have never been the same since having my tubal ligation after my 3rd child. I think that tubal really screwed my hormones up. I wish I never had it done. Oh well, too late now.

So, the whole H pylori and FNH thing is just a theory I am evaluating. I wonder if there is some sort of relationship. No telling!

Oh, by the way...I agree with you that doctor's hate it when you know too much. It's very frustrating...

 
Old 01-14-2009, 09:45 AM   #4
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Re: Focal Nodular Hyperplasia - Symptoms?

Wow. I have all those symptoms or did before my hyterectomy in 2000. They have just recently found I have FNH in my left lobe of the liver. I also had endometrios really bad. I'm amazed by all the symptoms you have listed as I have all of them. Or did.

 
Old 01-15-2009, 12:07 AM   #5
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McRegnal87 HB User
Re: Focal Nodular Hyperplasia - Symptoms?

update- I saw the respiratory specialist before Christmas and my lung function was perfectly normal and oxygen levels 99%! so I have been given the all clear on that one. My reflux symptoms have completely subsided having taken proton pump inhibitors continually for three months and the repeat breath test was negative so I can safely say I am free of H pylori. I still continue to have aches behind the rib cage and my osteopath reckons its ligament pain from around my liver, my question is - is the FNH still growing? - . Not much else to report just that I still have to wait for another seven months before re scanning- hmmm
Mc

 
Old 02-17-2009, 09:13 PM   #6
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Re: Focal Nodular Hyperplasia - Symptoms?

Hi there. All of this sounds scarily similar to me. I just turned 27 years old, and actually, in two days, am celebrating my year anniversary of being FNH-free! I had an 8cm rapidly growing "atypical" FNH. It appeared to have some mixed characteristics of an adenoma. After billions of tests and a biopsy, the docs resected 65% of my liver, and took my gallbladder as well. Anyway, it was all found by my gastro, since I too have IBS. I also have asthma, and have periods of a low pulse-ox level for no reason. And I have menstrual problems as well. I was put on the pill at age 14 to alleviate the symptoms of heavy, painful periods. There is also a family history of cancers, endometriosis, gastroesopogheal reflux disease and kidney stones! So reading these posts just made me sort of blink in amazement. Just to let you know though, so you dont worry- FNHs are not known to become metastatic (in other words, turn into cancer). So if the docs are reasonably sure from your biopsy, and it hasnt appeared to grow much in any of your imaging tests, more than likely, it's a benign tumor, just like they suspect. And usually, they can be lived with. Since it's causing such pain though, I suspect you may want it out. I completely understand- I had a LOT of pain behind my ribs and with my right lung and right chest. Just fair warning though; if you see a surgeon and he says recovery time is approximately 6 to 8 weeks, dont believe him. I'm no wimp about pain. In fact, I'm a pretty tough chick; I used to finish playing sports games after I fractured my ankle, tore a ligament, broke a finger, broke my nose, etc. I even had to have major surgery on my shoulder blade/back after a car accident a few years ago. Liver resection surgery was the most painful process and recovery I've ever gone through. I dont want to scare you if you need the surgery. Obviously, I'm still alive, so all went well. I just want you to think EXTREMELY long and thoroughly if electing surgery is even an option. I'll keep you in my thoughts! Take care!

 
Old 02-18-2009, 12:22 AM   #7
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Re: Focal Nodular Hyperplasia - Symptoms?

Hi IMS, thanks for the reply, I am waiting to hear if I can have another scan to check that it isn't growing, if it isn't then I think I'll be okay to leave it and watch, its now 6 months since my last scan and I just want to be sure - it sounds like surgery is pretty intensive and if I can avoid that I will. It's interesting about the low O2 levels, have they improved since having surgery for removal of the fnh? Sounds like your fnh was what they call telangiectatic fnh or as it has been re named telengiectatic adenoma, seems like a new lesion that has been identified more recently.
Mc

 
Old 02-19-2009, 07:05 AM   #8
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Re: Focal Nodular Hyperplasia - Symptoms?

McRegnal87-

I hope you can get another scan soon too, just to be sure it's staying the same! Mine grew pretty rapidly. The docs had waited 6 months to do another scan, and when they did, they were shocked. It went from ~ 4.5 cm to ~7 cm. That was early december, so they immediately scheduled my surgery for late december. However, my birthday is at the end of december, and I just had a bad feeling about having the surgery right before my 26th birthday. For some stupid reason, I really thought that I was going to die in surgery. So I stubbornly put it off, and convinced them to wait until mid-February. Bad move on my part. They did wait, but the tumor grew another whole cm because I waited (it was over 8cm at surgery). As a result, they wound up having to take more of my liver then they originally thought (65%), and my gallbladder too. Obviously, you can't help it if your docs/insurance are being extremely conservative, but if you're worried about it or the symptoms are getting worse, I would really push to get another scan done soon, just in case.

As for the o2 levels, I haven't had any episodes of a low pulse-ox since the surgery, which is awesome. I had a few episodes for several years before even knowing about the tumor. Since the tumor grew pretty rapidly, I would think the episodes might have been more due to my asthma back then. Then again, since I'd had no reason to have abdominal xrays previously in my life, maybe that was the tumor starting to grow/act up back then, but we just didnt know it. It could have been there my entire life, but only started to grow in my twenties or something. The docs dont know (so neither do I.) Either way, I'm happy now!

I can't believe I've been one whole year of being tumor-free though! I elected to be alcohol-free for the entire year, just to make sure my liver would grow back to the best it could be. I'm going out tomorrow night to celebrate though, and will be having my first drink in over a year- woohoo! (I think I'm going to be one cheap drunk now- haha!) I feel like 27 is going to be a good year for me now! (Or at least, much better than last year!)

If you have any questions about symptoms, or tests/ biopsies/ surgery/ recovery, frustrations, ANYTHING, just let me know; I think at this point, I've done it all, and would be glad to help in any way if I can. Take care!

 
Old 02-24-2009, 08:15 PM   #9
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Re: Focal Nodular Hyperplasia - Symptoms?

I am sad to say I have had all of the things you have. I actually started one of the first threads on FNH on this site. Since then many have been closed.

I had symptoms with no answers for years with the FNH. I had a kidney stone which led to the finding of the first FNH that was 7cm x 11cm in Nov 04. I had a resection July 05 but had to leave a small 2 cm tumor in the center of my liver. At the 6 wk check up I had another tumor. Then 6 months later another. You get the picture. 3 years later I have 5 now that are stable all under 4 cm.

But to answer your other questions. I had adenomyosis tumors in my uterus first but had the liver taken care of first. Had a hx of ovarian cysts. Hysterectomy in Nov 06 and then 5 cm tumor on my ovary.....not cyst so I had both ovaries removed two months later. I was dx with H pylori when the diareahea would go away. I have to give it to the kidney stones.....I had a second ct today due to a 3.5 mass on my pancreas they found last week looking for another stone!

I don't know what is going on but I am really down. I am 36 years old an never feel good. I hurt head to toe all the time. I have migraines.....dx with a venous anamoly in the brain. Sinus surgery due to over sized cavities that stay infected. Tonsilectomy because of chronic strep throat. One thing after another. I truly beleive that all is connected some how some way.

God bless you and I hope you feel better soon.

fannylou

 
Old 02-26-2009, 01:49 AM   #10
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Re: Focal Nodular Hyperplasia - Symptoms?

Hi ya'll, I'm very new to these boards.
My name is Kim and I am 27 yrs old. I was dx with FNH last July. It was a looong process that started in October of 2006. I went to my gastro for my IBS which I've had since I was young. He did a U/S and found a couple of masses in my liver.I had felt pain and tenderness there for a year or so before that. I went in for 2 ct scans w. barium..not fun, x rays, a ton of blood tests and they still couldn't tell me what was growing on my liver. My dr. suspected fatty liver, telling me that a biopsy would be unecessary, and we just left it at that.
I got PG with my 3rd child a few months later and given instructions to follow up on the condition after I had the baby. It was considered a high risk pregnancy because of the liver issue, so the baby frequently got checked by a peri. He was always doing just fine in there, but the pressure from him expanding in my belly was painful at times. I gave birth in Dec. 07 and a few months later in April 08 I followed up with a new gastro since I had moved. The pain was getting worse around this time, it hurt just to hold my baby to nurse him.
That's when all the fun started! Test after test. I had more CT scans, 2 MRIs, a biopsy (which came back clean), and a PET scan to make sure there wasn't cancer anywhere else in my body All this was so difficult with a newborn not to mention 2 more lil ones. It all ended in July 08 when my Dr dx me with FNH, and some fatty liver tissue on my liver. Now, she told me there were multiple growths on my liver, all over, and in fact they could only biopsy 2 since there were so many. That was it, no follow up instructions other than the Dr wanting to do a colonoscopy on me, which I have yet to do cause I am a big chicken). It almost seems like she was hesitant to give me the diagnoses. Like they still weren't sure. I was just glad to know it wasn't cancer so I was ok with whatever else the dx me with.
Reading all of your posts makes me see just how little I know about this. I wasn't given a whole lot of detailed info (demensions, locations etc). I called yesterday to get my records sent to me so I can get to know more about it and figure out where to go from there. Maybe get a second opinion. I need to know what my options are, because I really don't care to go through the rest of my life with this pain. It's not terrible pain all the time but still not comfortable. It's really been bothering me the past couple of weeks. The last 3 days or so have been the worst though. The pain starts after doing simple everyday things and I'm just sick of it.
Thanks for sticking around if you read all the way to here. I am so so glad to get to hear from others with FNH it's hard to find anyone to understand what I'm going through. My hubby tries to be understanding, but he has no idea. One family member even said it was all in my head. Not very nice to hear. But, I'm just glad to "meet" ya'll.
-Kim

 
Old 02-26-2009, 03:30 PM   #11
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Re: Focal Nodular Hyperplasia - Symptoms?

Kim,

Sorry to hear all that. You have been through alot. I too have 3 small adenoma's in the right lobe of my liver. It is very stressful even when they think they are not cancer. I also live in Texas just outside of Houston. I see Baylor College of Medicine Liver Specialist. They are great. How far are you from a liver transplant center? They usually know all about the liver. My one year follow up is next week hope to get good news. I have already had my mri so all I need are the results of my lastest round of blood work. Let us know what your records say as to size and location of your tumors.

Take care
Texasgirl

 
Old 02-26-2009, 06:31 PM   #12
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Re: Focal Nodular Hyperplasia - Symptoms?

Hi Texasgirl,
I'm from TX too. I lived in Houston for 6 years up until oct 07. I had seen a couple of gastros one in Katy which was basically useless since I was PG and Dr. Coleman at the Diagnostic Clinic. He's the one that discovered these things growing on my liver.
I am trying to locate a good liver specialist in Houston, since they seem to have really great Drs there, so that they may give me a second opinion and maybe plan a course of action if need be. My reg gastro here just doesn't seem to know a whole lot about it. Just keeps telling me that it should not cause pain...uh but it does!

I am impatiently waiting for my records to get here so I can figure everything out. All I know now is my side hurts, it's wrapping around to my back and the last few days have not been fun. I attempted to work out today...bad idea.
My symptoms are:
+pain (sometimes pinching sometimes sharp) in my upper right side- wraps around to the back, sometimes between the shoulder blades and rib cage
+fullness in the abdomen
+bloating
+occasional chest pain
+IBS symptoms as well

One quick question...if you've tested positive for Hpylori were treated, do still test + for it? I think I was told that one you've had it you always test + for it. Am I crazy or is this true?

 
Old 02-27-2009, 07:37 AM   #13
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Re: Focal Nodular Hyperplasia - Symptoms?

Kim,

I never had H pylori so I can't help there. You should get a second opinion at Baylor. There is a team of liver doctors that meet every thursday morning to discuss their cases. They all look at your scans and blood work and determine what course of action to take, that way its not just one dr making the decision. They chose not to biopsy mine (2cm is largest) and I'm ok with that unless they start to grow rapidly and in that case I'm sure they would opt for surgery. It takes a while to get an appt so I would call asap, while you are waiting on your info to arrive. Keep me posted.

texasgirl

 
Old 03-02-2009, 09:45 PM   #14
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Re: Focal Nodular Hyperplasia - Symptoms?

I wish I had found this forum a year and a half ago... It was such a scary and lonely place to be.

MomtasticKim: I started with all of those symptoms and thought I had an ulcer... it was gallstones. The ultrasound completely missed my FNH and the surgeon had quite a surprise when removing my gallbladder. All of the things you mentioned went away after I had my gallbladder removed. I did not have any abnornal bacteria levels in my system.

I went thru test after test... 2 C Scans, Nuclear Medicine, Endoscopy, 2 liver biopsies, and finally a special MRI. Every test I had was contradictory from the previous one. Everyone was confused. Some tests suggested Adenoma, others FNH, & the nuclear medicine people were alarmed, saying it looked potentially cancerous. The pathologist ruled from both biopsies that I had end stage Hepatitis and Stage 3 Cirrohsis of the liver. That was in complete constrast to all of my blood work and the surgeon's first-hand view of my very healthy looking liver. It was a horrible, nightmarish experience to go thru. After the first C Scan, they called me in saying I had breast tumors... more tests on that in the midst of the liver situation. I thought I was dying... that I had cancer that had spread from my liver to my breasts. Those turned out to be nodules also.

After 3 months of test, I got referred to UCLA Pfleger Liver Institute - they train liver transplant surgeons there. I am very thankful & blessed to be 1.5 hours from LA and have them as an option on my insurance. They conducted a special series of MRIs and finally determined it to be FNH. My FNH is 7 cm X 10 cm. Or as my surgeon/doctor said - "A very ripe Florida grapefruit grown under optimal growing conditions." :-) It sits right below my breastbone and at times, does cause some shortness of breath due to its proximity to my lungs. Occasional discomfort and some recent tenderness. Surgery for me is elective. I had no growth from 12/07 to 6/08. It is attached to 2 of my smaller lobes and I was told they would have to remove both lobes when they took the tumor or risk serious bleeding. If you cut them, they grow back but not if you remove them.

At this point, my decision is no surgery. I weighed the recovery time, the pain, the agony of cut nerves on such large incisions, etc. to the benefit I would get from surgery. If the excruciating pain of the biopsies were a pale version of the surgery, I wanted nothing to do with it... No contest there. But again, they have absolutely no doubt it is FNH & there have been no changes. I return to UCLA next month for a year follow-up MRI... I will be on the yearly plan for at least another 5 to 10 years.

Good luck to all of you!

 
Old 03-03-2009, 01:16 PM   #15
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Re: Focal Nodular Hyperplasia - Symptoms?

Quote:
Originally Posted by toester View Post

MomtasticKim: I started with all of those symptoms and thought I had an ulcer... it was gallstones. The ultrasound completely missed my FNH and the surgeon had quite a surprise when removing my gallbladder. All of the things you mentioned went away after I had my gallbladder removed. I did not have any abnornal bacteria levels in my system.

Initially my gastro thought it was gallstones which is why I had an ultrasound in the first place. My gallbladder was ok, but that's when they found the nodules on my liver. My attack of pain last march made me think again it was gallstones but nope, it seems fine. I hope that continues to be the case!!

Mc- Sorry you had such an eventful week. I hope it gets better for you.

Today, I'm actually feeling pressure right between my rib cage. I used to think it was just heartburn, but as it turns out it's right between my 2 liver biopsy scars so I'm sure it's a nodule that rubs up against me as I move. Having to pick up toys all day long doesn't help the fact either. I've been taking naproxen for the pain on my sides and back and it works thank God.

 
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