Unstable Pots Mess, And Now Being Told I Have Liver Lesions

[Maxine]

This is scary stuff with my family history of cancer----------I MEAN SCARY!

Here's the big giant kicker-----------my last 3-D CT of cervical spine and cranial area is "normal" according to radiologist. Today I found out the thoracic MRI was "normal" other then several hyper intense lesions on liver. This is NUTS because many other previous tests show lots of herniated discs up and down entire spine, broad based disc bulge on c-1 and 2, congenital cervical spine stenosis, congenitally small posterior fossa (lower skull), and partially blocked cerebral spinal fluid! I hear the base of my skull humming when I lie down constantly, I still have the bulging edema on the right side of my neck near clavicle, and I still have the unexplained mastoid fluid that's been there for 5 years----but no sign of ear infection to bring this on-----so where is the fluid from?

You all know my mother died of cancer in 2007, my brother died last year from colon cancer, my mother's brother died two weeks after she died of colon cancer, her sister died of brain cancer in 2003. In late 2006 I had a scare when they said wall thickening in duodeum, 3rd and 4th portion, and a large divertiucli of 5cm. The radiologist said he couldn't rule out neoplasm, but it was most likely a diverticulitis flare, or imflammatory bowel disease. Then my lung x-ray said mild interstitial nodularity. LET ME TELL YOU, my mother had so many tests done, and all with different little findings, but only possible neoplasms mentioned, with more follow up testing. This went on for several years, then when she got really sick, she suffered from HUGE blood clots running the entire length of her leg, and suffered small TIAs------she was losing her mind. This went on for three months. Just before this they found a small tumor in her bladder that they said was contained, and she didn't have to worry about cancer anywhere else. 48 hours before she died they found her whole abdomen, liver, bladder, and lungs were full of cancer.

This is so scary I can't begin to tell you. I can barely think straight. My right side has always bothered me with dull pain, but more so in the last year. I have attributed it to the diverticuli in small bowel. Feels like a baby fist jammed up in there. Not horribly painful, but uncomfortable, and I get full easily when I eat.

My double contrast lower barium enema in Early 2008 showed diverticuli in every portion of large bowel, only sparing the ascending colon. They couldn't rule out polypoid polyps, but thought it could be retained stool.

I feel doomed.

Maxine :0)

I'm not in very good spirits right now.

[lieze]

I'm sorry Maxine,

One day at a time.

lieze

[Noreen]

maxine-

Goodness, that is worrisome stuff. I'm sorry, too, that it all brings back the pain of losing your mom and brother, too.

My prayers for a lessening of your anxiety during this pre-dx phase. For me anxiety makes everything worse and you could use peace now.

Blessings and gentle hugs,

Noreen

[Maxine]

Thank you---

I'm scared of the fact that it showed as one cyst before on CT scans, and now it's showing as multiple cysts.

Maxine :0)

[Angelika_23]

Maxine,

I have the SAME THING! I have to go get a CT scan every year so they can keep an eye on "them". It was just one, now it is three. I try really hard not to think too much about it. They assure me they are cysts and nothing to worry about.

Angela

[Maxine]

I read that hepatic cysts are benign and nothing to worry about----I just hope the radiologist is right on this, because he's wrong on the rest of the thoracic MRI! I have had a desiccated disk on t-8-9 for a while now, and NIH also verified it as well, and also said my whole thoracic spine is deteriorating. I know herniated discs were showing on MRIs dating back to 2002, 2003, 2004, 2005, 2007---------------------so I'm not sure what this dude knows about reading films. Maybe he's specifically looking for instability only, since this is specified on the order. With EDS, it will probably never be seen on MRIs or any other test that doesn't show us in motion.

However, all my other tests show other abnormalities that can result from an unstable spine-----i.e.----->pannus growth on odontoid boney covering in the c1-2 area.

I called my PCP to find out if I should have more followup with this due to the family history of cancer. My mother had a cyst for many years, and since they didn't find the masssive amount of cancer in her abdominal cavity until 48 hours before she died----we have no idea where her cancer started.

Maxine :0)

[Maxine]

My brother's cancer spread to his liver, and that is ultimately what took his life. His liver shut down, and all the toxins spilled until his system causing organ failure. His cancer started in his colon. My mother, brother, and uncle died in the span of two years. Her brother died just two weeks after she did.

This is some scary *****.

Maxine :0)

[Poohbear]

I'm sorry you are dealing with this kind of added stress.

Maybe you can take the film somewhere ese to get another radiologist to read it for a second opinion?

This is easier said than done but TRY not to worry. Certainly keep a watchful eye on things. It is very common to have cysts and small benign lesions on the liver. Is your liver function on blood tests within normal range?

I can understand how upsetting it is for you---especially given your family history.

Hugs to you!

[Maxine]

Thanks Poohbear!

I'm sure they'll do liver function tests, but as far as I know they have been in the normal range for years. The bilirubin was slightly elevated when I first got sick with POTs, but has since been stable.

I saw my endocrinologist today, and he understands my worry. I told him that the radiologist said it was probably hepatic cysts, and that would be fine as I know they're benign lesions. I can deal with that. It's just too scary since my brother's cancer spread to his liver, and that''s what took him from us. It was so sad to see him that way when the toxins got to his brain because the liver could no longer process them. He went from being himself one day, and the next day he didn't know where he was, or who he was.

The only problem is that I know the radiologist is wrong about the spine aspect of my MRI. THere's no way it could be normal, as I have too many other tests, and opinions from doctors that say I have multiple herniated discs, congenital stenosis, pannus growth on odontoid bone, ect. ect. So it's stunning that this radiologist couldn't see any of that. It's plain crazy! Another radiologist from the same hospital said that my artery anatomy was exquisite! Heck, he missed a whole vertebral artery that was missing on the left side of my brain. Who do you miss that! NIH wondered the same ting when they reported it as missing.

I'm so sick of the insane ignorance---------------It's plain stupid!

Maxine :0)

[juliegee]

Sorry, Maxine-

I have a really stupid question...Are you sure they had the RIGHT scan? I fail to see how all of that could have been resolved since your last MRI.

Years ago, I was Dxed with mitral valve prolapse. Then, a few years later, the technology had improved, and I was told it wasn't MVP after all. Could this be BETTER (more accurate) technology? Just a thought.

Lastly, so much of reading a scan depends upon the skill level of the radiologist. Did s/he have all of your past history, symptoms, etc? Could you take your latest raw scans to a different radiologist to have them read?

What does your PCP recommend re. the liver cysts?

I wish your news were better & didn't leave you with so many unanswered questions.

Gentle Hugs-

Julie

[Maxine]

Thanks Julie, I appreciate the support from all of you!

It's the right scan, and it's the same hospital that reported the CT scan of my cervical spine as "normal". And many years of tests from some of the most advanced hospitals proove this area is a mess. When the radiologist from this same hospital read an MRA of my brain arterial structure as "exquisite", I later found out from NIH that thw whole left vertebral artery in my brain is missing. I asked the neurologist from this SAME hospital why is was read as "normal", when this left vertebral artery is missing? she said she wanted to see the film and compare it to the one from NIH. I looked at both disks in my computer, and I could clearly see it's missing! she ended up calleing me and saying, "yup, your right, the left vertebral artery IS missing". I asked her why the radiologist said is was "normal"----"exquisite", and she replied that he was 70 years old, and he wasn't very good. OK THEN, DOES HE MISS TUMORS, ANERYSMS, AND OTHER SERIOUS THINGS!

I'm not saying this missing artery is the end of the world, but Dr. McDOnnell from the NIH EDS study said it's important to watch this, as high swings in BP could cause a stroke! I don't have the compensation of the left vertebral artery.

I'm calling the oncologist who's doing the genetic testing on me for lynch syndrome http://ghr.nlm.nih.gov/condition=lynchsyndrome .

I'm going to tell him about the liver lesions/cysts. I want to have any cancers ruled out in my digestive system. My digestive system is always miserable, and I'm bloated 95% of the time. It's gotten worse in the last couple of years. I'm sick up feeling full after a few bites of food.

Tuesday I see and orthopedic surgeon to have his view of the CT and MRI. He has alreday said I have cervical cranial instability (CCI).

I know this might seem trivial compared to the other things I have going on, but now I have another molar bothering me on the upper left. This molar is crowned, but there's a slight gap which exposes the tooth under it. It's starting to bother me, but the dentist insures me it's OK. It just drive me nutty sine I have already lost 3 of them. It's so embarrassing, and I'm very self conscience about it. It's the EDS caugin problems with my teeth. My dental hygene is excellant---I'm OCD about it, and have all kinds of tools to keep my teeth in great shpe, but it still doesn't work out. I can't imagine getting another tooth pulled----especially upper----not with my neck instability! The place I went to have my other molar pulled last year was very dismissive. At first they weren't, but they read an old report from a neurosurgeon who didn't think I had CCI, and my treatment from there went down hill. the oral surgeon who oulled the tooth was rough, and insensitive. He had to split the tooth into pieces to get it out.

I can't handle another dental problem on top of everything else.

Maxine :0)

[janiedelite]

Hi Maxine,

I'm so sorry you're having to go through this. It is SO frustrating how different radiologists can read scans differently. Honestly, sometimes they are just lazy too. My mom gets CT scans every 3-6 months and one doc will see something on her heart or liver one time, another doc will read it the next time and see nothing. Then next scan the spots are "back" again. And this is all done at the same imaging center. When we see her specialist once a year, we bring hard copies of all her recent scans because he takes the time to read them in front of us and only treats patients with her rare type of cancer. He actually can state with accuracy what different spots are and what they mean for her treatment. NOT that I'm trying to put more worry into your brain regarding cancer!

I learned that when radiologists are reading films, they'll have a template of a "normal" abdomen/chest cavity/brain/etc that they superimpose onto the patient's film. I think the purpose of this is to help with anatomical landmarks. Also, their reports are initially pre-programmed to say everything looks normal. The doc has to enter a correction in the field he wants to edit so that the report will state an abnormality.

This system is not necessarily a bad thing as long as your radiologist is thorough...

You mentioned a thickening of your duodenal wall. Have you gotten checked for carcinoid? It's the most prevalent cancer in the small intestine (it's what my mom has). The tough thing is that it's really hard to catch by endoscopy because it starts by growing on the outside of the intestinal wall and you won't see anything until it's large enough to protrude through the intestinal lining. If you're going to do an endoscopy, camera endoscopy is the most thorough (but super spendy, depending on your insurer). The cheapest and best way to start is to draw a Chromogranin A, which is a specific chemical released by carcinoid tumors that lingers in your bloodstream for several days. Docs used to do urine 5HIAA's to screen for carcinoid, but that only checks if your tumors have been secreting serotonin in the past few hours. And not every carcinoid tumor secretes serotonin. Other than CT scan with contrast, octreoscan can also help detect carcinoid tumors. Still, my mom's tumors are super hard to see on scans, even though we know they're there because they've been seen in surgery. Most radiologists don't see them at all.

It just seems like if it's not one thing, it's another for you! I hope you can get reassurance soon,

Thankful

[Maxine]

Thankful, I appreciate your kindness and support. I had further testing on the large diverticuli in small intestine in late 2007/early 2008, and it was indeed the diverticuli that has been there since my 20s. I have had two flairs of diverticulitis----one in 1987 that was very bad and caused a fever, and the other in 2005 which caused my white count to go up to 16,000. I do know this divertculi has been there a long, long time.

The liver lesions is what scares me the most right now, and the fact that I have not had a colonoscopy. The barium enema didn't show anything major that I know of in regards to possible tumors. Here's the results;

IMPRESSION:

1. DISTENSION IS SOMEWHAT LESS THEN OPTIMAL AS THE ILIOCECAL VALVE WAS NOT COMPETANT AND MUCH AIR LEAKED BACK INTO THE SMALL BOWEL.

2. NUMEROUS DIVERTICULA ARE SEEN, PARTICULARLY IN THE DESCENDING AND SIGMOID AREAS WITH SCATTERED DIVERTICULA IN THE TRANSVERSE REGIONS. NO CONSTRICTINGOR OBSTRUCTING LESIONS ARE SEEN.

3. THERE ARE MULTIPLE SMALL FILLING DEFECTS SEEN WHICH MAY BE RELATED TO RETAINED STOOL AND SOME OF THESE COULD BE RELATED TO AIR FILLED DIVERTICULA OVERLYING THE COLON, BUT SMALL POLYPOID LESIONS ARE NOT TOTALLY EXCLUDED ON THE BASIS OF THIS STUDY.

I have a call into my brother's oncologist to see if blood work for lynch syndrome is in yet, and I called the general surgeon that I have seen for her opinion on the lesions.

It's not good that I have excessive diverticula, only sparing the ascending colon. This is way too much for someone my age. I'm bloated 95% of the time, and rarely have a day with comfortable guts. However, I don't notice severe pain, just discomfort, mild cramping, and major bloating.

I also become full very easily. You would think this would help me lose weight----NOT. However, I haven't gained anything since last summer, but haven't lost. Now I will be............I'm want my thin self back. I'll figure out a way with this crazy messed up body.

I had an endocrinology appointment yesterday, and HE was REALLY nice and very caring. My thyroid junk was put on the back burner, and I haven't seen him for 4 years. He's definately understanding about my EDS, POTS, Spine Issues, ect. I couldn't believe how much, and I almost wanted to pinch myself to see if this could be true. He's doing the hormone testing my gynochologist wouldn't doo---or think necessary. BIG clue; missing periods, hot flashes, and stagnant weight. I'm not huge, but about 20 pounds heavier then I should be, but I'd like to be 30 pound lighter. He wasn't focused to much on weight, but more so on my thyroid as it's shrinking and slowing being killed off by my immune system from the autoimmune hashemotos.

I still think the wellbutrin has caused the weight gain----if only I could stop taking it. If I miss a dose, I'm bed bound for the most part. Blood vessels dialate enough now, off the wellbutrin they barely constrict at all.

Quite a mess I am, and praying to be less of a mess when the docs can figure out how to help me.

Maxine :0)