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Gallstones/pain ,surgeons refuse surgery!!
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Gallstones/pain ,surgeons refuse surgery!!

Hello,I'm sure most of you know of my symptoms/pain from past post's.Meet with surgeon who refused surgery inspite of my pain/nausea ,and not being able to eat.I have had ultrasound and have ALOT of stones but surgeon claims may not be what is causing pain (the pain is gallbladder area,upper right side that radiates to  chest,side ,and back along with referred pain to pancrea's area,nausea,and indigestion)
   I dont know what else it could be?? I have had colonscopy and endoscopy in may'06 with good results,barium studies,many catscans,laparscopy in aug'06,recently had appendcitis in oct'06.Also have IBS but I know IBS isnt causing this much havoc.
    Along with pain I have episodic fevers/chills but all my blood work is normal,and no jaundice.
     I'm in horrible pain daily and cant seem to get dr's to listen to me.I'm at my wits end ,anyone else go through this (its been a year!!)...what is the next step?
                     Stephanie
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193245_tn?1189993322
Hi.  

I've responded to your last posts, but I think we need more information if you're comfortable giving it.

Are you in the UK or somewhere where there's a public health system?  Or are you in the United States?  If in the United States, are you insured?

Who's currently treating you?  If you're at a hospital in the US and a GI has recommended surgery, is the hospital's surgeon the person who's refusing?  On what basis?  You need to ask him to be specific.

Let's assume for a moment that you are insured.  Your GI has recommended surgery.  You can then look in your insurance booklet for other surgeons and begin calling them.  Have your GI release your records to every surgeon you call.  One if not all of them will probably agree to do it if it is indeed necessary.

If you're in England and are dealing with the NHS, I don't really know how to deal with that.  I'm sure someone on the internet can offer you advice.  This may sound like a silly idea, but you could post a question about dealing with NHS at Yahoo! Answers.  Surely there's some bureaucratic loophole you can take advantage of.  On Yahoo! you'll get a bunch of crappy answers, but there are so many people on that thing the odds of getting at least one good answer is high enough to make it worth while.  It also looks like NHS should have some kind of ombudsman or something.  As a last resort maybe you could contact your MP.

If you're in the US and are NOT insured, I'd recommend being sneaky.  Go to your local county hospital.  The ER.  Exaggerate your symptoms like crazy.  You already sound miserable, but make yourself sound even MORE miserable.  If that doesn't work, ask to talk to the chief of medicine.  

I'm interested in your case.  Please let us know what you're doing about this and how it works out.
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148354_tn?1211237506
Hi,thank you for your reply.I'm in USA (michigan) and have medical insurance.In a month I've made 4 trips to er,finally referred me to a surgeon from hospital,in fact I saw 2 surgeons,who then referred me to a GI specialist for further testing.I dont know what else can be tested since I've had all other test to rule out any other disorders.3 times in er the dr was all for removing gallbladder but each time surgeons refused.
      Surgeon told me taking gallbladder out may not end the pain that just having stones dont mean it needs to come out or is diseased,inspite of daily pain and classic symptoms.I had a hidascan last yr (april'06) the gallbladder filled and emptied slowly (tech informed me,but surgeon said it was fine) I was in hospital for 3 days in April'06 for suspected gallbladder pain,surgeon at that time (different hospital) felt I had inflammation of gallbladder and had me on antibotics for 3 days,didnt help pain.Did go away but had episodes few times a month.Appendicitis hit me in oct 2006 ,had surgery for that..figuring this upper pain was referred pain from surgery.
   Obviously it is gallbladder issue and I'm willing to take risk of having it out to see if pain ends.I just cant get any dr to listen to me.I have been in er in crying rages but it wasnt drama I was really in pain.I have appt today with family dr..maybe it is time to put on some drama to get this taken care of.
                                                 Stephanie
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148354_tn?1211237506
Hi,thank you  both for your reply! see new post I made,I cant believe it! surgeons are refusing.Most are eager to do it.I go to family dr today so maybe he will send me to gi specialist that can speed this up.
                                   Stephanie
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148354_tn?1211237506
meant to post above comment on my previous thread (hospital no help) pain pills kicked in..I'm soooooo out of it...lol !
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193245_tn?1189993322
Yep, I'm in the states.

If you're sick and doctors think the gallstones are what's making you sick, there are only a couple of ways of getting them out.  Surgery is the most common option, but it's a medical decision.  If they think there may be other options to get rid of the stones, do consider them as living without a gallbladder isn't ideal.  I mean, it's not that bad, but you'd definitely rather have one if it's healthy.

Incidentally, I failed the HIDA scan but the ultrasound didn't really show anything except "sludge", whatever that is.  They did the surgery based on the HIDA scan results and it turned out that there was a small tumor (benign) that was really close to where the bile duct connected to the gallbladder.  Without having the HIDA scan I probably would've died of malnutrition related illness by now!  haha

Oddly enough, I never experienced any pain whatsover from the gallbladder until about three days before surgery.  Then it started hurting like crazy.  My symptoms were intense nausea.  From what I gather, that's pretty rare.  That fact combined with my age (at the time 28) was probably why it took so long to diagnose me.

Advice:

Post-op, your docs will probably give you no diet restrictions.  Go ahead and jump right in.  Eat what you want.  If it's fatty you may have to run to the WC pretty quick, but psychologically, you need to learn to enjoy food again.  That was a big problem for me after surgery.  I continued eating like a rabbit just out of habit.

Good luck to you!

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148354_tn?1211237506
Hi,I have hmo so I need a referral.Just got back from dr he agree's it is gallbladder but he is sending me to GI specialist next week and said it will speed things up.Pretty much going to the hospital didnt help,but the surgeon who refused surgery in hospital is in his group.I have a feeling GI specialist with agree it is gallbladder problem.Whether it is diseased or not,I want it out,as many stones as I have (ALOT) might as well get it out and over with,eh? I dont want to wait for further complications (bile duct blockage) my friend let her gallbladder (stones) go for years and ended up jaundiced and really sick with duct blockages.Makes sense to me to remove it especially if it is causing pain whether it is healthy or not,that was surgeons concern is removing healthy organ that having stones dont mean it is diseased and I understand that he is being cautious but still frustrates me.
      are you in the states ?
            Stephanie
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Avatar_n_tn
Hello, I just skimmed through what you hve been going through.  I have had some of the same problems.  I have been in and out of the ER and to the dr regularly with severe pain.  My symptoms included constipation back pain, throwing up, indigestion...I can go on and on.  I had a ultra sound done and it showed thickening of the gallbladder.  But i ended up in the er again and was told "their" ultra sound came up perfect and nothing on the cat scan except inteciceptions in my bowels. so I went through more and more testing and after 2 months of SEVERE pain I went to see a surgeon from another hospital and had my gallbladder out 2 weeks ago!  all my pain is gone and have had regular normal bowel movements.  The pain in my back was on the opposite side of the gallbladder in my ribs and now there is NO pain.  I believe you eed to find another surgeon for another opinion.  I went today for follow up and my was told my gallbladder was not functioning, it was diseased and pretty thick.  The surgery for me was very painful but well worth the results.  My advise go to another doctor!!!
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193245_tn?1189993322
Okay, now I think you're on the right track.

But I don't think you have to go to your regular doctor unless your insurance requires you to have a referral to see a gastroenterologist.  This is my advice...it's just advice and I'm just a regular person, so keep that in mind:

Call a GI clinic for an appointment.  Tell them it's an emergency and you need to be seen as soon as possible.  If your insurance requires a referral, call your primary physician and have him fax said referral to the GI clinic that you made the appointment with.  He may do that without having to make an appointment with him, which would save a little time.

GI will probably order another HIDA scan and perhaps another abdominal ultrasound, and if what you suspect is true, you're going to get much different results than the one you had a year ago.  GI will probably recommend surgery.  Mine called me on the phone to tell me that.

You can ask GI for a referral to a surgeon of his choice, but if that person can't do it soon enough you can choose another general surgeon from your insurance's list of providers.  Call and see who can do it the soonest.  Get the GI to send your charts to him in time for your appointment with the surgeon.

Your initial appointment with the surgeon will go quickly.  He'll just explain the procedure and this is the time to ask questions if you have any.  Then he'll send you to his medical assistant who will schedule an operating room and anesthesiologist.  You'll be scheduled soon, probably, if you're in as much pain as you say you are.

When my primary doctor first suspected I had a bad gallbladder, I literally could've been in surgery by late the next week.  That's how quickly all of this CAN happen if the stars align.  I had a GI appointment the next day, and tests scheduled the next day.  A few days later I was meeting with a surgeon.  Due to personal reasons I had to wait, but I literally could've had the surgery the very next week.

I think when you went to that hospital you got trapped in their little system.  It's time to go a different way.

I know what kind of suffering you're going through, and I wish you the best of luck.
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Avatar_n_tn
Yes Drs. are driven by insurance . A it sounds like you need your gallbladder out but there is one thing to consider and that drs. wont tell you is that gallstone aren't made in you gallbladder there are made in your liver and just get stuck in your gallbladder as they pass. I proved this by doing a liver flush after I had my gallbladder out, and passed stones that were tested and proved to be gallstones. know I have 4 years of chronic pancreantitis and I wish I had my gallbladder back. Pancreatitic scaring is eraverable.  
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