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Old 09-28-2008, 08:14 AM   #1
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tinyt3 HB User
Wink Adenomas/FNHs/Hemangiomas (x13)

Nessie,

I am so happy for you and I wanted so much for you to get good news. You are one of the ones that said things to help get me through. You deserved good news and now you deserve a good time! I am almost four months out and when you told me I would be okay I thought sure. You were right I am doing pretty good. I think now that you know you are doing good you can concentrate on your family and your happiness. Best wishes and hugs to you.
TinyT3

 
Old 09-29-2008, 10:39 AM   #2
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nessie1 HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

thanks so much for all the well wishes.

tiny - im glad i could help you hun - its so nice to hear that- it makes it all worthwhile!
i had a fab weekend i got VERY drunk and vomited several times - not good!!!
everyone has been laughing at me today!! i just feel so happy and free from all this stress!!!
thank you all for listening to me. i hope we are all still talking this time next year once i have my next scan!!

take care my loves

nessie x

 
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Old 09-29-2008, 06:47 PM   #3
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kt8889 HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

Hello ladies, I am so sorry I have not been around much lately. I will be better, I promise. I need to share a story with you. This Friday night, Will and I were trying to figure out where to go to eat. We eat out almost every Friday for date night. I was very tired and wanted an easy place, so we went to Claddagh Pub, and Irish chain here in the states. Will saw a flier on the bar that said..Liver on the River. It was yesterday, Sunday a benefit for a server with no insurance that needed a liver transplant.
So Will and I went. I met the servers husband and she still did not have a doctor. I felt like I was meant to be there. I told him what I had been through and gave him my doctors name and his nurses direct line. Will spent some money on raffle stuff, God love him, but I know God had a hand in me being there.
I am bless that we are all still checking in here. Tina, I know you have been giving out a lot a support lately to the new ladies, thank you for that. We all make a good team. I am lucky to know all of you and I feel like we have a story to tell still. Our mission is not over.
Hugs to all of you. Ness, I am so glad your scans came back with good news. I tell you, when we do meet, it will have to be Vegas, where the bars never close, you and I will be out of control girl!

Katie

 
Old 09-30-2008, 12:14 PM   #4
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granolawife HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

wow, katie, i love your story and i very much agree with you. i want to continue to help as many people as possible and i am so glad to know that when i am busy, there are others to "fill in"!

nessie, I am SO HAPPY to hear your good news!!! Definitely deserves celebrating!!!! So i have to ask...how much of it did they say grew back? I keep wondering how much grows back -- same size, or smaller? wow, i wish we could all get together for a cocktail to celebrate with you!

speaking of, I just got back from los angeles where i was visiting friends and had a few nights of boozing. i held up fairly well, but it gave me the worst heartburn i've ever had in my life. do you think that could be from the surgery? it was really ridiculous and lasted for a couple of days. i've never had that problem previously.

tiny, how are you feeling?

xx arlyn

 
Old 09-30-2008, 03:26 PM   #5
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tinyt3 HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

Arlyn,

Katie's story was inspiring and it is good to help give back. I know when I help others it helps me. I am feeling still at little sore at the inscision site and I get tired easily. Other than that I am doing pretty well. I try to enjoy my kids and help others. My daugher who is bipolar got into some trouble and that really stressed me out. We are pulling her out of the big high school and putting her into a small one of hundred kids. I hope this helps as I don't handle stress as well these days. How are you feeling? Are you one that is trying to have a baby? Sorry I mix up and lose track. You were very good at answering my questions when I needed so I felt like I could help some new ones coming in. This is a very remarkable board with some fantastic people. I would so love to meet everyone face to face. I believe someday we will
TinyT3

 
Old 09-30-2008, 07:46 PM   #6
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neens7982 HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

Hey everyone, '

Katie....I think there is a reason for everything we go through! I'm glad you were able to help the man out! That is great!

I'm so jealous of my drinking friends. Since my liver didn't regenerate, I really try not to drink too much (one beer, maybe...) and I don't take meds unless I absolutely need them...not even ibuprofen. It just worries me even though my liver functions are fine. My liver that is left is the size of a softball.

Arlyn...i'm glad to hear you are doing well too!

Hang in there tiny and all my other beautiful ladies!
xoxo

 
Old 09-30-2008, 09:46 PM   #7
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LindaG40 HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

Hi Ladies!

I'm back from Italy and thought I'd check in for a little inspiration from you all. It's finally here, my six-month checkup! I go in tomorrow morning for a CT scan, and then I meet with Dr. Bass on Oct. 13. I still notice some pain from time-to-time, so we'll see what happens tomorrow with the scan. In the meantime, I'm still waiting for Oprah to call!
Linda

 
Old 10-01-2008, 09:49 AM   #8
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tinyt3 HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

Linda,

I hope you had a great trip and welcome back. You are going to have a good checkup just like Nessie did. We are all here for you and behind you all the way. Glad you checked in and hope your dating life is still going good. Hang in there and Mr. Right will come along. Let us know how things go and we will be right here with all the love and support you need. I am glad to give back to all of you who helped me through my ordeal.
TinyT3

 
Old 10-02-2008, 01:49 AM   #9
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Re: Adenomas/FNHs/Hemangiomas (x13)

I'm new and have found this thread interesting. I've had a fairly full on 6 months. After a month's strange upper stomach pain (which I thought was an ulcer or something), in April, I went to the Dr. After a gastroscopy showed nothing, an ultrasound showed multiple liver lesions. An immediate CT scan confirmed there were 8 liver lesions including one about 3cm. I was given a really clear message that they thought these had to be secondary liver cancer so they started to look for the primary tumour. All my blood tests were normal. A colonscopy, bone scan, MR scans, pelvic ultrasound, PET scans etc showed nothing more - although the large lesion 'lit up' in the PET scan. Finally I had a biopsy (via laparoscopy) of the large lesion. Pathology showed that it was benign notwithstanding the PET scan.

Then a hiatus while everyone relaxed and I realised how lucky I was to have 8 adenomas. Well, maybe. Certainly that's so compared to what I faced for a good eight weeks when my days seemed numbered. I've since had more scans and a whole heap of differing advice. The gastroenterologist wants to monitor me with scans and tells me the risk of the adenomas turning malignant or rupturing is small. The liver surgeon wants to remove half my liver because adenomas aren't good to have because, guess what - they rupture or turn malignant. And as he tells me I have only had one biopsied. He says leaving them in situ is too big a risk to take.

Meanwhile I still have the pain, so operate at 70-80% of what I was capable of a year ago when I ran a half marathon. I'm 47 with a pretty big job and two teenagers. I'm back at work. The doctors don't think that the adenomas should cause the pain. But they can't find any other answer. The surgeon tentatively thinks they could be the cause. I'm sure the large one is the problem, particularly because it's where the pain which shifts into the back - a gnawing, burning pain - seems to come from.

Right now, I have a surgery date for end October with the first surgeon but my local doctor wants me to get another out of town opinion with an even more experienced specialist (who operates out of a special liver unit). While it's probably sensible from a surgical point of view, it means more delays. What have I learnt - is that there is absolutely no certainty in any of this and the best we can do is get as informed as possible though all decisions come with risk. It's hard work, and after 6 months, I'm still not sure what and when the next step will be.

 
Old 10-02-2008, 10:22 AM   #10
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nessie1 HB User
Wink Re: Adenomas/FNHs/Hemangiomas (x13)

katie - hi there my love - wow how strange is that you being there ?? it was meant to be - yes vegas sounds so good!!! you would have to look after me as i would be out of control - take care hun and keep checking in x

arlyn - hey there you , lovely to hear from you too and you are doing well. thanks for the kind words

tina - hows your incision hun?? hows your daughter ? its lovely you are helping the newbies - im proud of you hun

neens- hey there - if your liver functions are normal a drink or two wont hurt? let your hair down love- after all you wont be drinking once you have a bun in the oven

linda - glad you had fun in italy - how was the scan?? keep us informed hun - hows the love life - dave??

susan - welcome hun. it sounds like you have had a similar journey to a lot of us im sorry. my advice is go to the other surgeon and get another informed decision. the bigger the hospital the more experience they have of these. a large teaching hospital is the best with a specialised liver centre who do transplants. yes adenomas can rupture or turn malignant but it is a small risk but nevertheless still there. get a second opinion and see what they say. surgery is hard but a lot of us have had it now on here and we are fine. we will help you all we can love. let us know how you get on - the waiting is the hardest part unfortunately. the pain you have sounds like the same as mine - a burning pinching pain that radiates around the back especially if standing for too long. take care x x

as for me - not much to say really. im still on cloud 9 and have several social events coming up. im increasing my hours at work from 2 weeks time which will be handy with this credit crunch going on.

take care my loves - and all the other ladies out there who help me x x

 
Old 10-02-2008, 12:34 PM   #11
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tinyt3 HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

Susanfg,

I understand what you are going through. My adenoma was on the back side of my liver and I had terrible back pain. It would seem nice to have a more experienced liver surgeon. My surgeon said they never can guarantee what they are until they are removed and sent to pathology. I had one adenoma but had to have 55% of my liver removed. The back pain is gone and I feel better then before. It is hard but like Nessie said we all made it through. I can't tell you which way to go but just listen to your gut feeling as only you know how much pain you are in. We are all here for you and will be every step of the way. Ask anything you need answers too and we will do our best.

Nessie, Yes my inscision is still pretty tender. I sometimes put a cold wash cloth on it in the evenings. That is a small price to pay for getting that adenoma out of my body. As for my daughter not doing to good but is starting a new school that is much smaller. I hope that will help. Thanks for asking. I would love to meet someday.
TinyT

 
Old 10-02-2008, 01:40 PM   #12
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granolawife HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

susanfg...Definitely get another opinion. a delay is not a big deal in the big picture and this is a major surgery that you are considering. i got more than one opinion prior to having surgery to remove my 2 FNHs and was so glad that i did. my first consult with a surgeon and gastro dr. ended with them telling me not to do anything until i became "jaundiced", at which point they said they would do surgery. They also suggested an endoscopy and colonoscopy to see why i was having so much nausea, since it "couldnt' be from the FNH". ridiculous!! This did not sound appropriate to me obviously, so i went to a special liver surgeon/center where they told me i had no choice but to remove them ASAP. Post-surgery, turns out they were right. My liver and gall bladder were not functioning properly as they were being blocked and I could have gotten much sicker and might not have been able to surgically remove them at all if they had continued to grow. i am still angry about the previous horrible advice i was given, but thankful that i was smart enough to know that it wasn't right. good luck...please keep us posted!

Tiny, again, you are so strong and sound like such a good person. you certainly have dealt with so much while trying to heal yourself. i hope that things are going better for you and your family. i am very glad to hear you are healing well!

Nessie, how much did your liver grow back? could they estimate the size? i am wondering how much actually replaces the old...?

Neens, seems my period is finally getting back on track, so we'll see how the trying to conceive goes. keep me posted on how you're doing over there...

Linda, welcome back!

 
Old 10-02-2008, 01:42 PM   #13
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granolawife HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

ps, Beth, are you still out there? how are you doing? how is your incision, etc.?

 
Old 10-03-2008, 12:05 AM   #14
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Re: Adenomas/FNHs/Hemangiomas (x13)

Hi again everyone! I've not really had a chance to get online the last couple weeks, so I just spent some time reading the more recent posts. I'm fairly new to this site, so I'm sorry I'm not familiar with all of you and your stories yet. I'm trying to read some of the old posts when I have time. I have written a couple of posts previously.

After suffering from abdominal pain and discomfort that seemed to only be getting worse, and several tests I was diagnosed with FNH. The last surgeon I saw in September who supposedly had some experience with the liver decided after not really examining me that the pain couldn't be caused by the FNH because that is rare. So he decided that it was muscle spasms. I had done alot of research on FNH, and almost every description seemed to fit what I was experiencing. I also researched abdominal muscle spasms and I just couldn't relate to anything I found on spasms. After posting my story on this message board, I was advised to find a hepatibiliary surgeon that does transplants so I went on-line and researched this and found a couple in my area. They do work at a large teaching hospital here in Portland, so I'm hoping I'm on the right track. I went back to my primary physician and she disagreed with the surgeons diagnosis, so she agreed to refer me to the specialist I found on-line. My appointment is scheduled for the 17th of October. The nurse I spoke to said she had several people contact their office after seeing the surgeon I went to originally because they were unhappy with him as well.

I know I haven't been dealing with this for nearly as long as most you on this site, but I get so frustrated being uncomfortable or in pain all the time that I can't imagine dealing with this that long. It also scares me to think of having surgery. I've read about several of your surgeries and the surgery itself is enough to be scared of, but I'm really concerned because I am a single mother. Are any of you who have had the surgery a single mom? If so, I would appreciate your story. I appreciate all the information that I can get from all you.

Take care and good luck to everyone! Thank you.

 
Old 10-03-2008, 08:06 AM   #15
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tinyt3 HB User
Re: Adenomas/FNHs/Hemangiomas (x13)

Misschatty10,

I applaud you because you are taking charge of your own health. After they said my gall bladder did not have any stones they were going to give me a stronger antacid. I told them I needed a specialist because my pain was too severe. They sent me to a gastrointerologist and he found the spot on a sonogram. Then after he checked me with an upper gi and made sure everything was okay in his line of work, I was referred to a liver surgeon. He immediately said 80% chance surgery and that it was an adenoma. He said still he wanted one more test and sent for an mri. Then he told me they never know 100% what it is until they cut it out and send it to lab. He was correct about mine. I am not a single mother but a mother of three. My daugher who is 16 is bipolar so she cut me no slack as I was recovering. Then I have an 11 year old daugher and a four year old son. I will not lie it was hard but I made it. You will need some help if you have a parent or sibling. I think you will need someone to stay home you for the first couple weeks you are home. As soon as you have a surgery date if you do then I would get a support system going. Some of the ladies on here they just watch their fnh. I was told people don't have symptoms with adenomas but I had severe labor like pains in my back. Hang in there and keep reading. Nessie has fnh so you can read some of her posts.
We will wait to hear what the new surgeon says. Hugs to you and hope everything works out for what is best for you.
TinyT3

 
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