Gallbladder... [UPDATE!: CT showed nothing- WHAT NOW?! Second Opinions!] post 15

[FutureMrsC]

I'm currently suffering from what I believe to be gallbladder issues. (Both my Mom & my maternal grandmother have had theirs removed after YEARS of being undiagnosed... [their symptoms were not stereotypical, but that was before the HIDA scan came around, so who knows?]

I've been nauseous beyond belief for about 2 months... (and I've taken a couple of pregnancy tests just to make sure I'm not pregnant ) and I've been getting some pain on the right side of my ribcage that spreads across to the left... as well as having stabbing pain in my shoulder. The only other symptom I have is being pretty bloated, but not in the "typical" areas... (mainly up around my ribcage where the pain is).

Anyway... so far, my general physician has prescribed an ultrasound (came back negative), done some bloodwork (showed nothing) and then referred me to a gastrointerologist.

Love the G.I... she seems to rock! I've seen her twice now... once for the initial consult, the second for my endoscopy. My stomach was red/inflamed, but there weren't any ulcers...

She also ordered some bloodwork done to check on pancreatic enzymes, just to rule out pancreatitis.

Today, I had the "fun" of a HIDA scan (aka cholecystingraphy... sp?) where they inject the radioactive stuff & take pictures... It didn't go too bad- I was relatively entertained because there was another person having one done next to me that started 10 minutes after I did..., but if I tilted my head back, I could see the projection screen... anyway... the other patient's gallbladder was emptying the radioactive stuff into her intestines... but mine barely emptied anything out... so... I'm assuming something's wrong with it?

I have my followup appointment on Feb. 13th, so I guess I'll find out for sure then... however, if you've heard of this happening, please let me know!

Amanda
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[Mackey Mouse]

Here is a big old hug for you, I have had an ultrasounds, and endo's, upper GI, but I thought I missed the HIDA scan until I read what it was.. I have had that too and do not remember any discomfort....they start an IV and send the dye through and take pictures, you have to drink some drink too.....that is the one? I did not find that too terrible..

I had my gallbladder out, then it turned out it was not really gallbladder, it was in fact reflux disease. Mine does sometimes start behind that shoulder blade and then moves to the front in the middle of my chest, then the pain that seems to go and up down on the pain scale. I also sometimes get like a tightening in my jaw, which is scary, as all these symptoms mimic heart attack. The only thing that stops my esophagus from this spasming because of the acids coming up is to take something to relax me and two tums.. I have it down to a science now.

Good luck and let us know how you do...

 

[FutureMrsC]

Just bumping this back up to see if anyone knows anything about what I saw w/ the test [I edited first post].

Marsha, thanks for the hug! There's one from my DH & I to you & your DH

 

[Mackey Mouse]

I am not a doctor, but am wondering if maybe you have blocked bile ducts and that is stopping the emptying into you lower intestine.....

In my case, I know it went there right away, they were shocked at how fast....

So...do we have to wait till February 13 to find out what the results were?? Notice the we, I am worried too. Can't you call before that and get some answers before the appointment? I would try, but then I am a bit aggressive lately and figure I want an answer asap. Enough is enough. Try not to worry, but I would give it a few days and then call the doctor and ask some questions...

Hugs back you two... hoping for no pain until you get some answers..

PS... when I coached cheerleaders, a lifetime ago, my cheerleaders would call me Mrs. C.. and my husband and I have a friend who calls me Mrs. C. and my DH, Mr. C... made me smile when I saw your name on the Dis...

 

[DISNEYLOVER70]

I am not sure about the "bladder not emptying" you talk of, but I can tell you of my experience with that test.

I had suffered for probably 3 years, started when I was 26, pain in my middle back, in the center of my abdomen just below my sternum, went to the doctor, was treated for reflux, 3 trips to the ER, nothing but "could be stress related". I finally went to the ER one night sweating profusely, heart rate 125 "resting" and I was in agony. The ER doc that night said "you are too young to have gall stones, but I am going to recommend your doctor order a test to check your gallbladder. When I went in to take the test, the tech that was doing it was very nice. He chatted with me to pass the time. He was looking at the screen and I asked him what he saw. He said it is "what I don't see" that is the problem. He said he couldn't give me official results because he was just the tech, but my gallbladder should fill up with the dye and light up on the screen so they can see if there are any stones in it (they wouldn't light up) and he didn't see anything. I said, "so i have no gallbladder?" and he said, it appears you are full of stones. After I had the surgery, the doctor told my parents I was full of stones and it was highly unusual for a girl my age to have one, let alone several.

It is very frustrating to go into an ER, doctors office, with symptoms, to be told to go home without an answer. I am glad your doctor ordered the test. Senseless suffering is ridiculous. Needless to say, I switched my GP after that.

If it is your gallbladder, my surgery to have it removed was a breeze. Same day surgery, laparscopic, 3 small incisions, and really very little discomfort at all. If I moved a certain way, I would feel a little tightness like I pulled a muscle, but nothing to dread, honestly.

Good luck and please let us know how you make out.

 

[FutureMrsC]

DisneyLover, thanks for your post! I'm hoping that I'll find something out sooner, rather than later. Today was just brutal w/ my nausea/pain!

 

[FutureMrsC]

So... let's see. The last time I updated, I was just happily taking phenegran, darvocet, or tigan... or a combination of any... anxiously waiting for my results (which weren't to be given until 2/13).

My nausea got HORRIBLE! I spent Monday through Wednesday literally teaching near my classroom door so I could run down to the bathroom and throw up. I think, over those three days, I threw up about 6 or 7 times. No fun! Phenegran kind of helped, but not as much as it used to... and the TiGan was a laugh... I could've taken a placebo pill instead and it would've affected me the same way.

I called the Dr's office multiple times, and finally talked to a nurse who cared. She promised to talk to the doctor and try to call in something else for the nausea.

A couple of hours later, my gastrointerologist called me... apparently my bloodwork is fine (she checked pancreatic enzyme levels) and my HIDA scan (cholecystinigraphy... aka gallbladder function test) came back "nearly normal" [according to the nurse, a bad "ejection fraction" score is 30 or below... and mine was 52.

Moral of the story: They've given me compazine (which is still working!) and moved my appointment up to monday (2/12).

I'm hoping she won't give up and just tell me it's IBS (which it definitely isnt.... I don't remember reading about IBS causing so much nausea/vomiting).

I did read online that sometimes HIDA scans don't show diseased gallbladders that well.... and it took FOREVER for my grandmother's gallbladder problems to be correctly diagnosed... so maybe it still could be my gallbladder...

Bottom line: I'm still frustrated... but at least I can kind of eat now. Maybe I'll learn something tomorrow.

 

[Mackey Mouse]

Hugs to you....the other Mrs. C , you know I never felt nauseated with gallbladder, although they really took out my gallbladder for GERD, but they did claim on an ultrasound that I had gallstones...who knows what the truth was..

Hmmm, not sure what to say here but keep plugging at this.. do not let down or give up until you get answers. Bottom line is there is something not right if you are feeling like this and they need to find it. I hope you are dealing with a good diagnostic facility....just saying that because some small town ones are not always equipped to get the right answers....Also, compazine sometimes has side effects that will slow down your system and may cause, I hate to say the word, constipation....so drink lots of water and know that it is a common side effect..

Hugs again, keep us in the loop....

 

[FutureMrsC]

Compazine also causes "Parkinson's-like" side effects (facial paralysis)... and I'm having the "fun" of dealing with that right now. I had to leave school (and my students) and come home... what kind of a teacher could I be if I can't speak? Argh... hopefully today I'll have answers.

 

[Snowysmom]

Gallbladder issues are so frustrating expecially when the tests seem to come back normal. My DS, when he was 12, had very similar symptoms where he was nauseous all the time, couldn't eat much. He also had stabbing pain up to his right shoulder and under his shoulder blade. He had ultrasounds, x-rays, blood work, endoscopy and all came back normal. He had a hida scan done that showed that the gallbladder emptied a little bit slower than normal but they considered it to be within normal range. The surgeon decided to go ahead and take out his gallbladder even though he warned us that it may not solve his problems. Turns out the tube leading from the gallbladder was longer and narrower than normal so the bile was backing up into the gallbladder. It just didn't show up on the tests. The next day after surgery, he felt so good he wanted to eat everything in sight! he didn't even need much pain medication. I hope you can get some answers when you visit the doctor and feel better soon.

 

[FutureMrsC]

Well... the Dr's appointment went alright. She gave me 2 different anti nausea meds and we went over all my tests (and all their negative results). She still thinks that it COULD be IBS... but, she said in all honesty, she's thinking that it isn't... because as stressed as I was about my face not working (from the side effects of compazine), I hadn't had an attack.

She wants me to have a CT scan done, but after that, if I want to see a surgeon, she's recommended one. She said there's probably a 50/50 chance that my symptoms would go away... but the way I see it, if I don't need it, why not take it out already anyway... given that my mom and grandmother have had theirs removed after years of misdiagnosises (sp?).

All in all, I'm not frustrated about what happened today. She hasn't given up on me, and that's all I could really ask for.

Thanks for all of your advice and well wishes If you have any other stories similar to mine, I'd love to hear them!

Snowysmom I'm glad that your son did well... it's also comforting to know that I'm possibly not the only one w/ these psycho symptoms/lack of test results.

 

[Mackey Mouse]

I am up early before my trek to the City....but wondering here have you not had a CT scan before this?? What about an ultrasound? I thought IBS caused other issues not nausea and I want you to have some answers, darn it.. I would push for tests, but am wondering out loud....if all tests come back negative and she refers you to a surgeon to have the gallbladder out, will insurance cover it with no test results that it is diseased... I am just thinking here and trust me know how difficult medical insurance companies can be....just something for you to investigate. Maybe others have more insight into the world of insurance and inconclusive results before surgery, but I am concerned for you and would not want you to get stuck with a huge medical bill...

Hugs to you and keep plugging ahead.

Also to Snowysmom.....I am so glad that worked out for your son....I hate when they cannot find the cause and keep telling you everything is normal and you are still in pain.

 

[FutureMrsC]

This will be my first CT scan... hopefully, I'll be able to drink the contrast stuff successfully .

As far as seeing a surgeon with no "positive" results, I'm not sure. My Stepdad-IL (who is in the medical field) is wondering if there's something wrong with how my bile duct is shaped/functioning... whether it's too long, too narrow, or just doesn't go to the right place... perhaps that's something a gastric surgeon would be able to figure out? Who knows.

I'm on Zofran now... (after my Dr. personally called the insurance company to get them to cover it [it would have been $1000 for 60 pills ]) and it's helping without making me feel like I've done some kind of drug... but the pain is increasing.... though, given the choice, I'll always take pain over nausea.

OT, perhaps... but I'm wondering if I might be getting worse or just getting carsick. DH & I went to Alabama for the weekend (about a 4hr drive 1-way) and each time we arrived (at the hotel or back home) I HAD to throw up... it was incredibly odd... I never get carsick. Goodness, I hope this doesn't mean that my meds aren't working....

I'll keep you all posted... it's so nice to have peopel to talk to about this!

 

[FutureMrsC]

CT scan went fine- I didn't mind the contrast at all!

The days leading up to the CT scan, however, were not so great. I threw up on Saturday, Sunday, Monday, and Tuesday... just once, but it was because the pain in my abdomen got so intense, everything came up.... I'd had full intentions of calling my GI as soon as it was possible for her to have my results... but then, of course, Thursday went great and Friday went fine until I got home. I'm getting insanely bloated... [not having bowel problems, either... ] and having horrible pain that sets in around 5-6pm and lasts until around 9. Sometimes, like today, it starts before I eat dinner, other times, it begins around when my food must begin to digest.

Is this something other than gallbladder? It's going to make me crazy, I swear.

 

[FutureMrsC]

I'm going back to my primary doctor tomorrow to get her opinion on all of this.

I'm really feeling as if the GI that I saw was just patronizing me and making me wait to either see if it would go away or I would give up. Why else would she schedule me for a cat scan and then say "See you in 6 weeks!"???

I went with my family to celebrate my DM's birthday. We went to a pretty fattening traditional Italian restaurant [w/ greasy italian salad, buttery garlic rolls w/ enough garlic to hurt your tongue!] and then I had some really cheesy canneloni... all Anti-Gallbladder food... and all really fattening... just to see if I had a bad reaction. It didn't send me through the roof, but I can definitely feel it- it's nice to know it's still there. Actually... now that I'm writing this, it's REALLY hurting under my shoulder blade... I can feel it squeezing... goodness! It's nice though... as sad as this is... it's nice to have a confirmation.

I'm going to ask my doctor for an EKG and some more bloodwork to test my thyroid... just to cover all areas... and run through EVERYTHING that I've gone through.

My new plan of action is to go do the rest of my tests downtown with people who are more knowledgeable... the suburbian hospital has just screwed me up!

I love being in pain!!!!!!!!

I don't feel crazy this way

 

[Mackey Mouse]

OK.. here's the thing........under the shoulder blade, like crushing pain, but nothing showed up on the CT scan?? Did they do an ultrasound too? Sounds like gallbladder or reflux to me.....I will say this though I never vomited with gallbladder, just those horrible pains, which ended up being reflux anyway. I had my gallbladder out for reflux.

Are you near any major hospitals? Not like your local one, but one that has a gastroentrology department? I think maybe it is time to go to one that might have a bit more experience with these types of symptoms..

Hugs.. keep pushing. sorry you are in pain though..

 

[FutureMrsC]

Saw my general Dr today. She told me NEVER to go back to my GI!

As far as what happens next, she wants me to do a barium swallow to check the function of my stomach.... then, she is personally going to show another GI my tests and let him advise.

It's not reflux- my endoscopy showed nothing really... I wish that could have been my answer.

She said that atypical presentations are rare, but not unheard of... and that I might be developing chronic cholecystitis and the walls of my gallbladder havent thickened up yet.

I feel better after talking to my Dr... my GI was just patronizing me.

Maybe I'm headed in the right direction now.

Marsha, thanks for the hugs

Amanda

 

[Mackey Mouse]

Glad you updated....I agree time for another GI doctor... I have done the barium swallow test...and the upper GI test and the endo...you name it, I have done it..

Last night I had the reflux attack from hades....it was the worst, 4 tums later and one pill to relax me, it finally stopped after 2 hours. It always scares me as it is in the middle of my chest where the heart is.. I sat sitting up for quite some time, even fell asleep that way, and I tried to think what could have caused it. It was a stressful day, they have changed my medication from Nexium (insurance will no longer cover it) and until I can see this new doctor, I have to suffer it out with Prilosec, which I do not think is working. I did have some iced tea last night and wonder if the acid was just too much for me...I am going to end up drinking just water eventually...

So.. hugs to you, want you to know you are not alone. I have been dealing with this reflux issue for years, it never goes away even with medication.

 

[FutureMrsC]

My thyroid isn't working... Something finally came back positive!!!

This can be responsible for a lot of the nausea... so, we shall see how I feel once I start my medicine.

Having the barium swallow done on Tueday morning.

Goodness... I'm just so happy to know there's something actually wrong with me... sick, isn't it?

 

[Mackey Mouse]

OMG.. your thyroid is not working at all or functioning on the low level.. that could explain some of the nausea, but the pain part is what throws me.. Do you have headaches and leg aches???? That is always something I associate with low thyroid.. Keep us in the loop, I am thinking of you.. Hugs.