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Old 11-02-2008, 01:16 AM   #1
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kathryn38 HB User
Angry 2 giant hemangiomas

Hi, my name is Kathryn and I am a 38 year old female and I have found out that I have two giant hemangiomas on my liver. They are both around 10cm by 10.5cm by 10cm.

There was alot of anxiety waiting for the catscan results. I did know I had them 12 years ago but they were 3cm and 5cm then. I was told back then, don't worry, and I forgot about them. Within the last year or so I have been feeling a firmness in upper right quadrant. I had an 11.5 pound baby boy (okay 8 years ago) and I just figured it was some sort of abdominal wall damage.

Over last 3 years I went to a couple of doctors casually mentioning that when I would lay down at night I could not breathe well, as though I just couldn't get a full breath in, most said it was anxiety. Recently after seeing a doctor who confirmed there was a mass and going through an ultrasound followed by a cat scan, now I know one lives near my diaphragm. So maybe that is related. 2 years ago I had a ball in throat feeling that was diagnosed as GERD, and I wonder was that caused by Hemangiomas pushing up acid? I have quite the thick mid section which I also thought was just from giving birth to an elephant. I also had thryoid cancer in the past and I know hemangiomas don't cause that but I have no thyroid and take a replacement hormone. Well I went for a test that said my hormone levels were normal but there was a quite high TSH which alarmed my doctor (it was actually the who tsh thing that got the ball rolling on my liver). After all of the reading I have been doing, and seeing the link of hemangiomas to hypothyroidism, I am not worried about my pituitary gland or thyroid cancer tissue in my body- I suspect it is Hemangiomas. Once they are out I wonder if the TSH will return to normal. Did anyone else have a high TSH or was hypothyroid? Makes you wander what else these fellows can do to you.

I hope that wasn't too long winded, but I looked for answers to my various problems and I just want to share my story, maybe someone will go "AHA-me too!"

I go to see a surgeon soon and I am very nervous about any surgery and related pain. I held a grapefruit today up against my abdomen and thought, there are two growths the size of this inside of me, yuck. Any way of all things, I try to use humor to deal with this. I have found the word He-man-gi-oma works great with the chorus of Return to Sender by Elvis! First line is "Saw the image on the Cat Scan....." but that's as far as I have gotten!

Thanks for everyone's time.
Kathryn

 
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Old 11-02-2008, 02:46 PM   #2
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neens7982 HB User
Re: 2 giant hemangiomas

kathryn,

I'm so sorry to hear of your hemangioma growth!! It is crummy when those little boogers are near other structures. I had three and they took out the largest (7cm) last Dec via liver resection. I was 30 and healthy. The reason why they took it out was because it was near my diaphragm. It hurt to take a deep breath. In addition, I had really uncomfortable shoulder pain. It was so deep down inside the top of my shoulder that massage wouldn't help. I couldn't lay on my left side at night. So, being that it was touching my diaphragm, they decided to take it out. They took out my entire right lobe of the liver. I am so glad I had it done and now my year mark is just around the corner. I feel great. I do hear that the older you are, the harder the surgery can be. I'm still monitoring the other two.

How interesting about your thyroid. I never had thyroid problems before nor after the resection. But who knows what would happen. As far as hormones, I went off of hormones in 2004 (birth control pills). Yet, one of the hemangiomas still grew. There has been hardly any change in the other two. The one that grew went from 2 cm to 7cm in under four years.

You seem really positive and I am happy for that!! Please let me know what your doc says! And you always hear that laughter is often the best medicine. By the way, I am such a wuss for pain...had two epidurals when i had both of my boys, who by the way were not even close to your 11.5 pounder! (wow!) But, my pain was very managed after surgery. I had a little medicine ball with little tubes that administered anesthetic directly to the incision. Talk about amazing!

Where are you located? Who are you going to see?
Best of luck to you and if you have any questions, feel free to ask! Hang in there!

nina

 
Old 11-03-2008, 12:17 AM   #3
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kathryn38 HB User
Re: 2 giant hemangiomas

Hi Nina,
Thanks for writing back and sharing with me your story. Mine have not been painful, just a pain, with the breathing and all. What was it like to have your liver lobe removed? I worry about missing too much work. Did you work at the time, and how long until you returned?

I am located in Rawlins wyoming (very small) gulp. I am not entirely for sure if this town is appropriate for the surgery, I have heard the local veterinarian is darn good. Well seriously where I am going to have it I am not for sure. I am still waiting to talk to a surgeon here in town. I have read about some here on this board going out of state from states that I consider to be quite urban. I am about 4 hours from Denver if it turns out to be a serious sort of operation.

Oh I am a wuss for pain too. When I gave birth to my big one I went for the "I'm going to experience this and embrace the pain" that lasted for 20 minutes! I had a little something in the IV but not an epideral. Its fun to brag about, but the truth was, it was too late to get an epideral!

I know all this liver stuff is getting to me, otherwise I would not be writing at 1 in the morning!

Kathryn

Last edited by kathryn38; 11-03-2008 at 12:45 AM.

 
Old 11-03-2008, 07:16 AM   #4
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kt8889 HB User
Re: 2 giant hemangiomas

Hi Kathryn...so glad neens jumped in already. I was going to give her a shout in the other thread if she had not found you already. She is our resident hemangiomas lady. I had a 9 cm. Adenoma removed in April. It was found by very high ALP, alkaline phosphatase. I did not have much pain either.
I would recommend going to a larger town if you choose surgery. Don't listen to doctors if they say they can not operate or something else crazy that we have heard from women that are not with an experienced liver surgeon. Find a teach hospital if you can, they often have liver transplant units and see this stuff all the time.
Feel free to join us in our support thread. There is a group of women that have been chatting for almost a year now and have many posts about pre-op, post-op and all the lovely things that go with liver tumors. We are sticking around to help women like you!
Hugs to you,
Katie

 
Old 11-13-2008, 09:01 PM   #5
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Location: Paris,Tennessee United States
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wrightj6 HB User
Re: 2 giant hemangiomas

To all the patients with hemangiomas: I actually joined this website because I am a TMJ patient. But, I was on the internet tonight looking up liver leisions. So I skipped over here to see what you were talking about.
While being diagnosed with TMJ, they found liver leisions, (long story as to how this came about since I am a cancer survivor)....Actually, they are "spots" on my liver that appear to be hemangiomas. These have been found in two hospitals, on two diffierent machines, etc. one year apart, two different doctors. To make a long story short...I don't have a real comparison and my regular internist says not to worry. He is more concerned with the fact thay I have been overexposed to scans, MRIs, etc. the last few years.
But, I have lost over 35 pounds in the last 2 and one half years and it is being blamed on my TMJ. I have had colonostomy, etc. which is normal. And I feel I am okay except for some aches and pains of TMJ and age ailments and pains here and there. What I have found interesting is that you patients know that there is a relationship between thyroid problems and hemangiomias. What kind of facts is this based on? Just your comparison of notes? Or do your doctors confirm this information? I don't want to run to the doctor if I don't have to. I have had my fair share of them.

Last edited by wrightj6; 11-13-2008 at 09:05 PM. Reason: spelling

 
Old 11-13-2008, 09:56 PM   #6
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kathryn38 HB User
Re: 2 giant hemangiomas

Hi,
In response to your question about tsh and hemangiomas, I am the worst kind of patient i'm sure, i am an iternet patient. I joke about calling myself an honorary internet doctor! anyway, i noticed some studies linking hemangiomas in newborns with hypothyroidism. I have not had a chance to ask a doctor about this yet. My two hemangiomas are larger than what I first stated, about 12.5cmx11cmx10cm and the other one is 11x10x9 somewhere in there, so I really wonder is there a link?

I am going to have surgery at the denver university hospital on the 25th of this month and I will ask the doctor if they could have raised my tsh (i have no thryoidh due to thyroid ca and take hormones). But what i wonder though for you, being hypothyroid, i thought one would typically gain weight. I guess we need our doctors and endocrinologists to answer this question.

What type of cancer did you have? How big our your liver lesions?

Kathryn

 
Old 11-14-2008, 05:40 PM   #7
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wrightj6 HB User
Re: 2 giant hemangiomas

I have not been diagnose with thyroid problems....just weight LOSS. My hemangiomas are still small at this point. My cancer was breast cancer and not likely to travel to my liver next, I have been informed. But, I have that persistant dull ache below the right ribs. As of now, I trust the doctors to not proceed with anymore scans but, I want to stay informed.
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daddygirl

 
Old 11-14-2008, 05:42 PM   #8
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wrightj6 HB User
Re: 2 giant hemangiomas

I have not been diagnose with thyroid problems....just weight LOSS. My hemangiomas are still small at this point. My cancer was breast cancer and not likely to travel to my liver next, (I have been informed). But, I have that persistant dull ache below the right ribs. As of now, I trust the doctors to not proceed with anymore scans but, I want to stay informed. I am impressed with you fighting ladies writing on the internet and staying tough.
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daddygirl

 
Old 11-17-2008, 07:55 PM   #9
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neens7982 HB User
Re: 2 giant hemangiomas

Kathryn,

I had surgery on Dec 17th. I did not return to work until Jan 29. Then, I did two weeks of half time to ease back into it. I returned full time Feb 8. The surgery is a big deal. I would definitely find a liver surgeon who does these things for a living. My doc was amazing in Dallas. He did a complete liver resection in 3 hours and I was in the hospital for 6 days. No drains...just and NG tube for a couple of days and a central line.

What is interesting is that my liver did not regenerate. I guess when they take the entire lobe, the remaining lobe will grow slightly larger to compensate. A little scary to see this tiny liver on CT scan that is supposed to be working fine. Regardless of what the docs say, I don't take meds unless I have to and I hardly drink. When I do, it is maybe a half a beer. I feel like if I have to live with it for the rest of my live, I might as well give it every chance it needs.

Hang in there! If you have any other questions, don't hesitate to ask.
you can click on my name and read threads from Jan 08 regarding the actual surgery.

xox

 
Old 11-17-2008, 09:07 PM   #10
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kathryn38 HB User
Re: 2 giant hemangiomas

Hi Neens,
I went back and read through your posts and they were helpful. I so desperately want to be back to work in 3-4 weeks, not only do I love my job, the longer I'm gone, the higher the pile will rise!!!! This is nuts, but what if, my job is visiting with others, and writing plans in heavy charts, and coordinating appointments, so what if I scoot myself around in a wheelchair? I mean I would be eye to eye with most people there! Am I being a goof to hope 3 weeks? Maybe I will be more realistic post op.

I can't wait to lay down at night and feel like I can breathe again, it is a weird sensation like the back of my eyeballs burning, or my lungs.

I do have a tendency to think worse case scenario, but you weigh the choices. You know what really worries me? My boston terrier and pug. When those two start playing their little brains shut down and they run everywhere. The pug has a nasty habit of running me over if I am laying on the couch. I don't think he even realizes I am there. I might have to keep them out of the bedroom at night, and crate them more (insert sad face here!). Maybe I need to watch a marathon of it's me or the dog.

My surgeon will be Dr. Wachs (sounds like wax-or wack-that's kind of funny) and he is a liver transplant surgeon too, so I am in good hands I am sure.

I am sorry if I post too much this week, pre surgery week nerves, losing major sleep at night for sure!

I threw out the frozen liver in my freezer this morning-I don't know why I bought it......I hate liver!!!!!!!!!!!!!!!!!!!!!1

Kathryn

 
Old 11-18-2008, 06:06 AM   #11
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kt8889 HB User
Re: 2 giant hemangiomas

kathryn, bless your heart. You should read back at Nessie and my posts in March, April, May. We were a mess before surgery, but we were going through it together, so we posted many times a day.
I think 3 weeks is pushing if you have open surgery. I went back at three weeks with hand assisted laporoscopic (4 inch incision with 3, 1 inch) and it kicked my butt. I could really only do half days. You will be so tired, but it does go by quickly. A wonderful girl that used to come on here told me that you only get one chance to recover, so you make sure you listen to your body.
Vent all you want this week, we are here for you!
Hugs,
Katie

 
Old 11-23-2008, 08:04 PM   #12
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ginger73 HB User
Re: 2 giant hemangiomas

Hi I am three weeks out post surgery. i had 16 by 16 cm hemagioma. the surgen sayed it was voley ball size. and i had my gallbladder taken out also.I had a central line an ng tube 2 drains. my insicion looks like an L on my right side. no staple or sutures. they use that glue stuff. the drains hurts the worst. 1 day in the ICU and 7 days on the floor. It was not fun they had problem controling my pain. You have to stay strong and do what the nurses tells you to do. go walk 6 times a day deep breathing. You will not even remenber the firsts few days at the hospital. and you will be find. have someone stay with you if you can at all times. so all your needs can be addressed immediately. good luck.
ginger

 
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