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Old 12-27-2008, 05:26 AM   #1
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McRegnal87 HB User
Adenomas/FNH's/Haemangiomas x 15

RGold- in reply to your question about characterising lesions in the liver- this is what my consultant hepatologist said in his letter to me: '...Unfortunately scanning is in many ways interpretation of pixilated images and therefore is always open to a level of grey opinion' In other words they can never be absolutely sure about the nature of a lesion without removing it and looking at it under the microscope. Here in the UK they tend to be more conservative in their treatment of these lesions and in my case I have to wait a whole year before re scanning my 4cm lesion.
On a different note, I was having investigations for low oxygen saturations 93%- on my visit to the clinic two weeks ago my sats were 99% and lung function better than expected! so that episode will remain a mystery. I still continue to have pains behind the ribs and in my back- especially at night when it wakes me and I have no idea what's causing it. All the specialists say it can't be my liver- personally I think they're wrong
Happy New Year to everyone
Mc

 
Old 12-27-2008, 04:50 PM   #2
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Angry Re: Adenomas/FNH's/Haemangiomas x 15

I was told them same thing that they are not sure until they remove it and look at it under a microscope. In my case the surgeon felt it was an adenoma and correct when the lab came back. I had mine out two weeks after finding out about it. It was so scary to move so fast. I often wonder which was better waiting or getting it over with. I found out my shoulder pain is relating to me being laid up in a recliner for two months but nothing to do with my liver. It is the rotary cuff and I will start physical therapy Jan 5th. It that does not work then surgery. They did give me a new anti inflammatorythat works great. So my pain level is way down.
Nessie, I miss you and I am worried about you. Hello and wishing the best to you all!
Arlyn, Hope you are doing well.
TinyT3

 
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Old 12-28-2008, 10:21 AM   #3
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Re: Adenomas/FNH's/Haemangiomas x 15

Hi Ladies!

I am still looking for a better diagnosis after discovering my tumors in April 2008. I have 4. My liver surgeon is thinking they look like FNH, but as you have all said, they never really know for sure until they look at it under a microscope. I opted against a biopsy earlier this year because I was worried that if they were wrong and it was not benign, the needle would spread it through my chest cavity making it inoperable.

I went for my 3rd MRI yesterday at Columbia-Presbyterian Hospital in NYC. They did the regular MRI scan with contrast, then re-scanned me again one hour post-contrast. Hopefully, they will get some better data and I will get some good news in a few days.

I have been stressing lately about these tumors. I have been having a lot of pain in my upper right back, especially after eating or when I have to *burp* (sorry!) I'm hoping that my tumors have not grown or changed. Please say a prayer for me.

I'll post as soon as I get the results. Hang in there, everyone!

Angela

 
Old 12-28-2008, 10:30 AM   #4
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Re: Adenomas/FNH's/Haemangiomas x 15

Angela,
Thinking of you and hoping for the best outcome. I had severe back pain with mine and it turns out it was on the back side of my liver. Of course I had my gall bladder out at the same time so who knows for sure where they pain was coming from. I think if you find a surgeon experienced enough in dealing with these then he can tell what they are before they operate. My surgeon told me that he was 90% sure it was an adenoma 4cm. I had mine out June 2008 and it was an adenoma. He did say that he might find out otherwise and could have had the surgery for nothing. I was not comfortable having it in my body and I think it would have ruptured if I did not get it out. Now I am six months out of surgery and doing pretty good. My energy level is low but I think it is because I have high stress. Anyway hang in there and know we are all here to listen. Hugs to you!
TinyT3

 
Old 12-28-2008, 01:06 PM   #5
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Re: Adenomas/FNH's/Haemangiomas x 15

Hi everyone,
I am now past 4 weeks post op of surgery for my hemangiomas. I still have pain off and on in what I think is my kidney area, and I don't know if it is from the way I sleep propped up and sitting in the recliner alot. I still get internal pains but I have only been home for a week since they put a drain in me because of pooled blood. My MRSA showed up as a big lump in my armpit (thats what the doctor thinks it is and we are awaiting results of lab) and he had to open, drain it and pack it. I thought I was done today with it, but the doc had to open it larger and repack it. What can I say about that? OUCH! I am still winded and pained when walking and I realize I am walking hunched over a bit. I guess I need to consciously watch my posture, when I try to stand straight I feel a pulling and stretching sensation. Any one else have this problem? One day at a time.......
Kathryn

 
Old 12-28-2008, 05:20 PM   #6
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DazzledStar HB User
Re: Adenomas/FNH's/Haemangiomas x 15

Hi ladies!

Kathryn: I'm so sorry to hear that you were re-hospitalized and also about the MRSA! Ugh, it seems that when things go wrong, they all happen at once. It seems that you are staying strong! Posture has always been difficult for me too, I have not had surgery yet but it seems that when I am hunched over my back area near my liver feels better than when standing up straight! Hang in there hun, I'm keeping you in my thoughts.

AminNJ: Uck, going to so many MRIs must not be fun. Its also frustrating that the doctors (although not necessarily their fault) cannot tell what type of tumor it is. I am having the same problem! I've had an MRI, CT, and nuclear medicine scan, they say its definitely not a hemangomia and they do not think it is an FNH because of the way the contrast took to it. My hepatologist still votes for adenoma but she wants a biopsy to be sure...which I am very nervous about! I'm keeping you in my thoughts!

Update: I have not had a chance to go back to my hepatologist since before Christmas but she is scheduling a liver biopsy and also an endoscopy...she thinks I may have an ulcer also? Too many problems! For now, she is pretty sure its an adenoma but still wants a biopsy to be 100% sure. Unfortunately, my liver is the least of my worries right now. I have been having a lot of trouble with my leg lately. I can barely walk the pain is so bad. I went to my GP about 2 weeks ago and she sent me for an MRI where they discovered a 5cm tumor on my left tibia below my knee. It is rather large and causing me very much pain. I have a full body bone scan scheduled and am also scheduled to see an orthopedic oncologist. This tumor is priority #1 right now, as it continues growing it could break my leg...which is not what I want to hear. I'm looking to have this horrid thing out ASAP! And also hoping its benign...the thought that it could be malignant is a bit scary and honestly, I've put it out of my mind. For now, I'm on crutches and off work, I can't even sleep the pain is so bad. I told my mom the other day that I'd rather go through labor again! But, I'm trying to keep my head up, I know there are people out there with far worse problems!

To everyone: I'm praying for all of you wonderful ladies! You truly are an inspiration! I hope you all had great holidays and also have a wonderful New Year!

-Jamie

 
Old 12-28-2008, 09:02 PM   #7
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tinyt3 HB User
Re: Adenomas/FNH's/Haemangiomas x 15

Jamie,
I am really sorry all of the trouble you are having. The liver thing is enough without something else. I pray everything comes out okay from the leg. Keep insisting they do something to keep you somewhat comfortable. I to had numerous scans done with and without contrast. They said since my tumor was on the back of my liver it was why they could not tell for sure what it is. I think having the right doctors means a lot. If you don't feel comfortable with one then move onto a different one. Keep us updated as we are here for you. Thinking of you and hoping the pain lets up. Hugs and prayers
TinyT3

 
Old 12-29-2008, 04:08 AM   #8
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Re: Adenomas/FNH's/Haemangiomas x 15

Jamie,
I pray that everything goes well with your leg, and that it is all benign. That is alot to have to mentally deal with and alot of uncertainty. Make sure you let us know about your leg tumor. Could it be a spur? Please try not to think worse case scenario.
Angela,
I am glad you are under the care of a doctor and they are staying on top of things. Those scans can be very helpful. It's easy to stress not knowing what is going on. And tests can be wearisome!

I am trying to understand, or redefine the word strong. My family says I am tough but I break down crying every day, just tired of being tired and I was crying about having the gauze pulled out of my armpit tomorrow. A little piece of gauze! (Which burns coming out like something terrible) I try to remember that others do have more serious problems, especially some children, then I feel selfish, and then I cry some more out of guilt and that children are suffering). I never thought, prior to the surgery, that I would be such an emotional mess. My heart races at the doctors office, I feel I have medical post traumatic stress in a way. Tomorrow is a blood draw too to make sure my blood is thin enough because of clots they found. I cried about that too. We all have different coping methods, and I am trying to find mine: whether it be faith in something larger than myself, or just trying to distract myself during procedures. Maybe when they pull out the gauze I could yell my name, age, and social security number (name, rank, serial number). I will think about you ladies too, if you girls can do it, then I can too. I hope this is an appropriate place to post this stuff (or should I go to an anxiety board?). But really we all know that these surgeries we have had and are potentially facing affect us more that just medically, the fears and pain have a big emotional impact as well, and that's where these forums really provide support. May I ask you guys, what do you do during painful medical procedures to get you through them?
The one thing I look forward to is feeling better. My endocrinologist said that I lived with those tumors for many years, just think how different I may feel now that they are out. There something there: hope!

Thank you all for your support!
Kathryn

 
Old 12-29-2008, 08:18 AM   #9
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tinyt3 HB User
Re: Adenomas/FNH's/Haemangiomas x 15

Kathryn,
This is the perfect board to vent. It is not just about finding the tumors but how we all have dealt with them. I cried so much and could not even explain why. My mother would come for several hours and cook/clean/ take care of me. Then when it was time for her to leave I would cry. As for the tests, I had a sonogram, ct scan, liver collied scan, and then another ct scan. Through all of the painful procedures I would say the serenity prayer over and over. Sometimes I would just tell myself I had to be strong for my family. I feel bad for my complaints because you and many others have had a lot worse complications than I did. My hope for all of you is that you start healing and not having anymore extra complications. I think the attitude helps people heal and I know it is hard to have a positive attitude. I was so angry about mine and then I would cry. Try to let everyone on here cheer you on. Hugs to you!
TinyT3

 
Old 12-29-2008, 08:20 AM   #10
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nessie1 HB User
Re: Adenomas/FNH's/Haemangiomas x 15

Hello my loves

havent had time to read yet but I WAS BARRED!!!. they lovely administrators have let e back on.

happy xmas and new year to you all .
I cannot thank you all enough for all the support i have recd this year from you guys. We must meet in 2009!!

nessie x

 
Old 12-29-2008, 09:23 AM   #11
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Re: Adenomas/FNH's/Haemangiomas x 15

Nessie,

So happy to hear from you. I was worried about you. You were a huge support to me in the days leading up to surgery. I am grateful and here if you need me for anything!
TinyT3

 
Old 12-29-2008, 09:29 AM   #12
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Re: Adenomas/FNH's/Haemangiomas x 15

Nessie, so glad you are back! I was so worried I would never find you again if you are banned for good! Yes, we must get together this year somehow.
Kathryn and Jamie, so sorry both of you are still fighting so hard. We are hear for you and you are in our prayers.
Hugs, to all of you, I need to run.
Katie

 
Old 12-29-2008, 01:21 PM   #13
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rgold HB User
Re: Adenomas/FNH's/Haemangiomas x 15

This whole thing is driving me nuts my symptoms are getting progressively worse 24-7 nausea weight loss little to no appetite BUT my lesions very small only 1.3cm i also have tummy pain especially when i bend or move to the right and it feels like a ball is thing (i can tell something is there)! My ALT have been a little low for almost a year now AST are in normal range.

as for your symptoms what else could it be?!


Quote:
Originally Posted by McRegnal87 View Post
RGold- in reply to your question about characterising lesions in the liver- this is what my consultant hepatologist said in his letter to me: '...Unfortunately scanning is in many ways interpretation of pixilated images and therefore is always open to a level of grey opinion' In other words they can never be absolutely sure about the nature of a lesion without removing it and looking at it under the microscope. Here in the UK they tend to be more conservative in their treatment of these lesions and in my case I have to wait a whole year before re scanning my 4cm lesion.
On a different note, I was having investigations for low oxygen saturations 93%- on my visit to the clinic two weeks ago my sats were 99% and lung function better than expected! so that episode will remain a mystery. I still continue to have pains behind the ribs and in my back- especially at night when it wakes me and I have no idea what's causing it. All the specialists say it can't be my liver- personally I think they're wrong
Happy New Year to everyone
Mc

 
Old 12-30-2008, 11:14 AM   #14
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nessie1 HB User
Re: Adenomas/FNH's/Haemangiomas x 15

hello all

Katie and tina - dont worry my loves im back after much A**licking!! HA HA .

Katheryn - im so sorry to hear of your troubles. I too have cried more than i can tell you. The emotional effect from this operation is huge and i never thought it would be so bad. i have faced death as you all have and somehow i have changed. it has hit me very hard and instead of being elated that im alive , im miserable as sin!! My doc thinks i need councelling to come to terms with it all which i am going to do. This year has been the worst of my life. Katheryn please dont despair - it will get easier physically and emotionally -it just takes time. I have come to realise that life is so precious and i know that i need to be happy. You will be fine and dont feenl you have to be "strong" all the time. Until people go thru it they just dont understand- thats why WE are here my love. Take care of yourself and may 2009 be good. x x

well its been an eventful few weeks for me. My hubby is not well. he is seeing a consultant tomorrow (psyciatric). I want him to get better- if i could have my "old" husband back tomorrow i would. But so much has happened which i cant tell you all about as much as i would love to. Its been an awful few months, he has accused me of the most dispicable things and we have lowered ourselves to a all time low, but i hope and pray that 2009 will change things. Who knows. Can i move on? Will i ever be able to forgive him? i hope the meds and lots of therepy for his issues will help him be a better person.Tina - thanks for the support - i tried to post on the mental heath issues threads (which was why i was barred) so i dont want to touch too much on this im sorry. All i know is his behaviour is totally irrational, his mood swings are out of control and he is completely dillusional in his thoughts. I cannot live like this anymore which is why he is getting help.

to all the new ones sorry havent had time to have a good read but i will do.

To my angels - thank you sooo much. i wouldnt have got thru the year without you all and i feel i know you all so well. You are always in my prayers and i pray for a healthy and blessed 2009!

nessie x

 
Old 12-30-2008, 12:04 PM   #15
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AMinNJ HB User
Re: Adenomas/FNH's/Haemangiomas x 15

Hello everyone!

TinyT3: Thanks for your encouragement! You have no idea what a huge help you are to those of us just starting out with these tumors. Thanks for being here for us.

Kathryn: What a roller coaster ride for you. Just HANG ON. You're right about the emotional impact of everything you have gone through and are still going through. I truly think that's the hardest part of all of this... the fear, the worry, the way your life changes. Know that I pray for you every day. Things will get better soon.

Jamie: Oh my goodness, I was shocked to read your post. What a lot to have to deal with. Please keep us posted on your test results and what is going on with you. I'm sending up MANY prayers for you, and waiting anxiously for more news. Stay strong, you will get through this.

Nessie: What did I miss, why were you banned? (Or don't tell me if it will get you into trouble!) Just glad you're back!

MY UPDATE: I got the call from my liver surgeon's assistant today saying that my tumors have not grown or changed in 6 months and that they still think they are FNH. Next scan in 6-9 months. I'm just waiting for the report to come over the fax so I can read it for myself, then I will celebrate by hugging my kids.

I hate these tumors, I hate having them, but God has blessed me with this good news, and I am so grateful. As much as I hate these tumors, they have been incredible teachers for me. I see things about life so differently now. I realize with absolute clarity how much time I have wasted in my life in the past, and I will never be the same.

Angela

 
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