Discussions By Condition: I cannot get a diagnosis.

7mos of tests & no diagnosis---Liver "lesion"

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: jewele74
  • July 12, 2007
  • 02:15 AM

Warning...this is somewhat long & as thorough I could be with anything I thought might be relevant with my situation. I truly appreciate ANYTHING anyone could offer me!!!

In January of this year, I awoke with an "annoying" lower abdominal pain that became progressively worse over the day. (the pain was mostly concentrated in my lower-left pelvis). In less than 24 hours, the pain was so bad, it brought me to tears, and I was rushed to my doctor, who thought it might be appendicitis and rushed me to the hospital.

The ER doctor immediately did not suspect appendicitis. Blood was drawn and an abdominal CT scan was ordered. The blood tests indicated that I had elevated white blood cells, and diverticulitis was suspected.
I was put on intravenous antibiotics (levaquin? and cipro?), an all-liquid diet, and I was admitted for 4 days.

The CT Scan picked up a "liver lesion"--about 1.5cm. It was suspected to be a hemangioma, but more tests were ordered, which began my ordeal.
I was refered to a gastrointerologist and a Colonoscopy and additional CT Scan was ordered.

The gastrointerologist I was referred to believed I did not have diverticulitis (my colonoscopy was normal...no diverticula to remark of) and he believed I actually had a "freak, unknown infection".

Since this ordeal began, I have bounced from doctor-to-doctor...test-to-test.

The tests and their results are as follows:

1. CT Abdomen with contrast
CT Pelvis with contrast
Segmental wall thickening at sigmoid colon...pericolonic inflammatory changes...mildly enlarged uterus...small low-density focus in left lobe of liver....small simple renal cysts...

2. CT Abdomen W/O & W/CONTRAST
CT Abdomen Pelvis with contrast
1.5cm lesion in left lobe...not typical of hemangioma
all surrounding organs normal in appearance

3. Colonoscopy

4. Abdominal MRI
Well-circumscribed round 1.5cm lesion unchanged fom previous CT. Representative of hemangioma, though not diagnostic

5. Nuclear Medicine Spect Hemangioma Scan
Appearance is not consistant with a hemangioma

6. Nuclear Medicine Liver Spleen Scan (99m-sulfa colloid)
No focal tracer abnormality seen at left lobe of liver which would correspond with lesion demonstrated on CT and MRI exams

7. Abdominal Ultrasound Study
appearance compatible with hemangioma though diagnosis not confirmed...other possibilities: hepatoma, hemochromatosis, fatty infiltration, metastasis, adenoma, or lipoma.

8. Alpha Fetoprotein (AFP) Tumor Marker, Serum blood test
result: 2.0 units: ng/mL reference range: 0-6.0
I have since been referred to a Liver Surgeon at Lahey Clinic in Massachusetts. I am scheduled for blood tests and an MRI next week, and an appointment with the surgeon the week following.

I feel good. The only strange symptom I'm experiencing is slightly pale stools. I'm not fatigued, jaundiced, or otherwise "ill".

I guess I'm just REALLY nervous. I've repeatedly asked my doctors what it COULD be, and they say honestly don't know. I've been told to "expect" surgery...but no diagnosis...I've been told nothing other than "We don't know"...

I am a 33 year old female. I am 5'4" and 121lbs. I've NEVER smoked a cigarette, done an illegal drug, and I've barely even taken prescribed pain-killers. I rarely drink alcoholic beverages...and haven't been intoxicated since I was 16 years old. I am relatively fit...not an athlete, but I can easily do 8 miles on my rollerblades without getting tired. I take pride in taking good care of my health. I ONLY drink water---all day every day (except for the rare alcoholic bev.). I've had 3 sexual partners my whole life---and their sexual histories passed my vigorous screening requirements...LOL
I have a tattoo and a naval piercing...both professionally done by reputable establishments---they took the instruments out of sealed packages infront of me, and then sterilized them in alcohol.
I have 2 healthy children.
I have a history of gynecological problems...a hysterectomy is scheduled for next month. I've had ovarian cysts and Adenomiosis of the uterus. I've had a history of "abdominal pains" with no diagnosis---since I was a child. (The pain often, but not always, accompanied either mild constipation or loose stools)
I've had the following surgeries:
Ovarian cysectomy
Bilateral inguinal hernia repair
tubal ligation
cryoblation of the uterus

I have the following questions:

1. What could this "liver lesion" be, or be caused from?
2. How possible is it that I can have my hysterectomy and liver surgery done at the same time?
3. What can I expect the recovery (time and restrictions) to be like?

If you've gotten this far without giving up on me, you are awesome, and I sincerely appreciate ANYTHING you can offer me!

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7 Replies:

  • Hmm, what would the surgeon operate on? Is it mainly exploratory? Don’t expect answers after the surgery as that isn’t always the case. I had my knee done that way, still hurts (getting better though).I was diagnosed with a 10cm hemangioma on my liver (found though a preop test for a gall bladder removal). They said they are mostly begin but if I get symptoms, they can look at it.The general surgeon that did my gall bladder said if they ever want to biopsy it, they bleed like stuck pigs, so unless there is overreaching concern for one reason or another, leave it be (mine is 10cm, quite a bit larger and anything over 10cm is considered “Cavernous”).Best wishes,-Tom
    Anonymous 42789 Replies Flag this Response
  • are you on birth control pills? if so this may turn out to be a liver adenoma-- totally benign, usually in 20-40 year old women on the pill, and sometimes go away when you go off the pill. you probably won't know for sure without a biopsy, but the lesion is small and doesn't seem to be changing much, and it sounds like it's being worked up, so try not to get too freaked out.
    Anonymous 42789 Replies Flag this Response
  • If something shows up in the liver, the docs are usually pretty aggressive about finding the cause. The pale stool makes me think you might have an obstruction of the common bile duct. Or a fecolith might be causing pain in the abdomen. Fecoliths are common causes of appendicitis. If you have right lower pain or behind the belly-button, I would guess it's chronic appendicitis.
    rad-skw 1605 Replies Flag this Response
  • I can sympathize with you. I was told 7 weeks ago that a had a 1.3 cm "probable hemangioma" on the right lobe of the liver. This was discovered by ultrasound and ct scans for abdominal discomfort. Follow-up nuclear med scan (rbc tagged scan) for hemangioma was negative. I do not know where to turn
    Anonymous 42789 Replies Flag this Response
  • I can relate, I have been to numerous doctors for pressure in my chest and terrible heartburn. Cardiologist says not heart related, being treated for blood pressure that my normal numbers are 192 over 97. Meds make very little difference in that. Tests I have had recently for the chest pressure and heartburn are 1.EGD and the result was:The diaphragmatic hiatus was observed 39 cm from the entry site. The squamocolumnar junction was observed 37 cm cm from the entry point. There was a 2 cm hiatal hernia visible in the esophagus. Otherwise, the esophagus appeared to be normal. 2.US ABDOMEN RUQ: Ultrasound of abdomen...Findings: : The pancreas is unremarkable. The gallbladder is within normal limits. The liver echotexture is normal. There is a 1.2-cm hyperechoic mass in the liver adjacent to the neck of the gallbladder.. The common duct measures normal in size. The right kidney measures Normal in size. IMPRESSION: Probable hemangioma in the liver. Otherwise unremarkable I special requested twice to have the results phoned to me and still I* recieved them in an email. My Father died a very painful death caused by cancer of the liver and pancreas. Is probable the same as might be? Probable isnt for sure is it. Is a second opinion the next step?I hope for the best to you!
    Anonymous 42789 Replies Flag this Response
  • Hello, I think we could help one another. I've been sick since Dec. 2009. Check out my blog and get back to me.Most recently, I was found to have multiple Hem.'s and many many cysts in both lobes of liver. So, lemme know what ya think.
    AnnaMariaQQss 3 Replies Flag this Response
  • Hi did you ever get a diagnosis? I'm going through the pretty much the same thing... about to undergo my 4th mri scan in 6 months and I'm still hearing 'we don't know exactly' from the doctors with regards to my lesion. It's grown since my first mri but not rapidly.... really anxious to know what it is or more so what it isn't.
    Anonymous 1 Replies
    • September 28, 2015
    • 07:52 PM
    • 0
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