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Posted 4/5/2008 7:08 PM (GMT 0)
hello everyone... i have just been diagnosed with a choledochal cyst (ultrasound and mrcp), has anyone in cyberspace had the same diagnosis ??? what was your experience?? if this is a canadian site, i am in british columbia, any lead to a good doc and hospital... what can i expect... my surgeon is not to forthcoming... have been send to an enterologist for liver function test... any words of wisdomn welcome... thanks !!
Posted 4/7/2008 2:17 PM (GMT 0)
Hi silent daisy and welcome to the forum,
I don't know of anyone in particular on the forum who has had a bile duct cyst, but it's a good thing you're getting followed up for it because I could imagine a persistent cyst in the duct could lead to problems down the road. Did you notice any particular symptoms that led you to seek medical care for this condition? Have you ever had problems before the cyst developed?

Welcome again to the forum and keep posting!
Posted 4/9/2008 12:59 AM (GMT 0)
hi sarita... thank you for your kind reply... saw the surgeon this pm... we went over the mrcp and the second ultra sound... he is sending me to a specialist in vancouver... bile duct cyst are very rare ( 1 in 2million people, mostly women of asian decent)... unfortunately also a precursor to bile duct cancer... my first symptoms were severe upper stomach pains, kind of like gall bladder attacks...they actually first thought gallbladder stones... whence the ultrasound... but my gallbladder is just fine !! keeps your fingers (and toes !!) crossed... until soon
Posted 4/9/2008 8:15 AM (GMT 0)
Daisy, I am glad you are seeing a specialist. And hey, there's never a bad reason to visit Vancouver (I loved it when I visited this past summer)! Did your doctor mention if he knew the "standard treatment" for this rare condition? I guess that's what the specialist is for. I'll be curious to hear what he/she says, and hope that whatever the treatment is, it won't require too long of a recovery period. Most of all, I hope you get some relief from your pain. Please keep us updated, and we'll make sure to keep all of our digits crossed for you :)
Posted 4/12/2008 11:52 PM (GMT 0)
SilentDaisy,

I'm sorry to hear about the pain you have.Did they give you any medication?When do you see the Specialist

Can you tell me how the symptoms started because i just had an ultrasound Tuesday and they found 2-3mm cholestrol polyps within my gallbladder.Then on April 24th they want to do a HIDASCAN.The pain is so excrusiating 24/7 lower shoulder blade,burping where  it almost comes back up,bloatted stomach,shortness of breath,pain when inhaling and upper stomach pain.

Hope you don't mind telling me how yours started.Because the pain I have has been going on 24/7 for 3 weeks.But I had other symptoms a few months  ago like the burping after eating,bloatted stomach etc....but the shoulder pain and middle of back around the sides 3 weeks now very painful.Any info from anyone would be appreciative.

Thanks,

Mary

 

Posted 4/14/2008 1:13 AM (GMT 0)
my dear mary... OUCH!!!  that sounds very painful... as far as pain killers go, that is another story... in the beginning i used to walk the pain off (just like pregnant women do), the only way i was comfortable !! i could not sit or lie (spelling??) down... i walked around for 4 hrs straight one night, refusing to go to emergency, b/c i did not want to sit or lie down on a gurney and wait !!!the only way i felt better was to just walk around... after one episode my g/p gave my tylenol 3, shortly afterwards we found out, that i was allergic to codeine !! big red welts on my body and asthma attack! therefore anything in the opium family is a no no !! DRAG!! extended relief caplets for people with arthritis (1000mg) seem to work surprisingly well! go figure! i have strict orders to go to emergemcy straight away if they pain gets unbearable and should i get jaundice ! hope you feel better soon... cheers, silent daisy
Posted 4/14/2008 1:17 AM (GMT 0)
p.s. some of your other symptoms mary, also sound very familiar !! but i also have a hiatal hernia (GERD!)
i find eating 5 or six small meals a day helps that problem... small meals are also better for people with gallbladder trouble...
Posted 7/18/2008 12:35 PM (GMT 0)
Hi I was just told I have choledochal cysts.  Could you tell me about you?
Posted 7/18/2008 6:42 PM (GMT 0)

mistymc,

How  r u doing as far as pain and has your Dr. ordered any test for you yet?ultra sound or a hida scan?The first test he did was the ultra sound and that's where the cholestrol polyps showed up.With that test my gallbladder was functioning only at 20%.I heard if your gallbladder isn't functioning above 35% they normally remove it because you don't really need that organ anyways they say.And since its been out I have felt so much better.

Let me know if you need any more information.But I  would highly suggest having a hida scan if your in alot of pain.Sometimes you just need to TELL your Dr. to order the test.I have several times and you know they always did some type of procedure aftrwards.Your body will tell you when something is wrong and you need to do something about it.Let me know how your feeling please.

Thanks,

Mary

Posted 7/18/2008 11:23 PM (GMT 0)
Hi Mary:

The Choledochal cysts were found in my bile duct during my gallbladder surgery. I wasnt in any real bad except for a few gallbladder attacks. I'm scared b/c Choledochal cysts are very rare. I have appointment with the largest hospital in Chicago but not for a few weeks.

Thanks for taking the time to ask,

Misty
Posted 8/6/2008 8:50 AM (GMT 0)
Hi--
I'm new to the forum and looking for info on choledochal cysts for a friend.  I noticed a post from silent daisy in April 2008 and wonder the outcome of her diagnosis (surgery?) and how she is doing.  Thanks.
Posted 9/5/2008 2:16 AM (GMT 0)
hello everyone... goodness it has been awhile since i have been on here..so here is the latest news... dr. charles scudamore is the surgeons in vancouver, for all of you who live in canada... he is great !!! trust me it is very difficult to find somebody with enough knowledge about bile duct cysts... on july 22nd he did an ERCP... during this procedure he inserted stents into the bileduct and pancreatic duct, in order to drain bile... i felt extremely sick after the ercp and had to go back to emergency... lots of pain, vomiting and fever.... it took almost 3 days for them to figure out what was happening... my body does not like the stents!!! SPASMS!!!! it has been an incredible HELL ever since... spasms come every 3 to 4 days, vary in intenseness (is that a word ?LOL) and can last up to 4 hrs at the time... it feels like being in labourpains once a week! i am on buscopan and heavy duty painkillers (dilaudid), but only when i cannot stand the pain anymore!!! but the good news is , SURGERY WILL BE ON SEPTEMBER 10th... oh yes, i almost forgot the best news EVER... NO MALIGNANCY was found during the ercp... my liver is clear, so are my gallbladder and pancreas... malignancies in BDC are very high at my age (55) 60 -70 % ... so it's all good!!
Posted 9/16/2008 10:27 AM (GMT 0)
Silent daisy - how did the surgery go?

Posted 9/19/2008 11:58 PM (GMT 0)
Silent daisy........Hope you are doing well. I have been hoping to speak with you. I live in the states but have bile duct cysts. The first doctor I have seen doesn't know much and wants me to come back once a year to have Liver test and MRI/MRCP tests done. So far Im not in a lot of pain. Just a few times a day a little bit of pain on my right side. He did a blood test for cancer that about 70% right and it came back no cancer. Are your cysts in your liver? I was told I have Caroli disease which I guess is the worst form of this to have. I hope you are doing good and look forward to speaking with you.

Thanks so much and take care.
Posted 11/2/2008 2:08 AM (GMT 0)

Sad news for friends of silent daisy. Petra's operation went well, her recovery was good, but three weeks later she died of an undetected duodenal(?) ulcer that perforated with no warning. She had few symptoms, and they were buried among a swirl of others. She managed to call 911, but died before help arrived with her beloved dogs at her side. I know she wishes everyone here the best of luck.

                 David

Posted 11/2/2008 3:35 AM (GMT 0)
Oh my goodness, this is terrible news...I am so sorry to hear this happened. There are really no words. Daisy seemed like a very upbeat, supportive, optimistic person and it seems unimaginable that such a catastrophe would occur. My heartfelt condolences to her family and friends.
Posted 11/2/2008 4:29 AM (GMT 0)
David,
I am so incredibly sorry to hear the sad news about Daisy. My heart goes out to her friends and family.
Thank you for the update.
Be well,
Lil
Posted 11/4/2008 10:24 AM (GMT 0)
This is very upsetting news. Hugs to all the family and friends.

Posted 6/17/2015 12:27 AM (GMT 0)
I am new and so sorry for all your loss, pain, and suffering. I became I'll almost ten years ago. The worst pain imaginable...u all know. Besides the 24th chronic pain, the chronic fatigue was terrible. Life as u knew it was over. The feeling was terrifying that besides those, another problem, I had sternum pains... meanwhile, it took me 8 yrs to get a correct diagnosis from UNM. The surgeon wanted to gut me. No way. Went to Georgetown University Hospital...they wanted to watch the choledoctal cyst grow. It was already 20 mm in the MRCP. A lot of our symptoms and pain are so similar...but the docs say 50% of gastric probs are never found. My gastro at UNM said I had so many tests, he doubted he could help me. I said but I prayed and this was my newest answer. I try to listen to the Holy Spirit. I was crying. He said there were two more tests but it was a million to one. He called me at 9 pm. I had both conditions. The cyst, full of bile, sometimes in people w no gallbladder, pain took my breath away. Upper right abdominal cavity...I had stopped sleeping because my body would stop breathing. My other problems was at end of sternum...birth defect...pancreas divisum. Both of these may be birth defects. I just want to tell you that there is hope...I went everywhere...my Mom and I went into debt...I was not giving up...that was no life. GOD DIDN'T WANT THAT FOR ME...I had to keep searching. WE LIVED IN VA, sorry about the stuck caps, but I felt I should up and move to NM. I searched for doctors. THE LORD gave me Dr. Derrick Cox in El Paso, TX. He operated robotically, using as many other surgery scars as he could...I had other surgeries that were supposed to take care of the Referred ha ha pain... even two spine surgeries. I have 6 very small healing scars...3 from gallbladder surgery. Dr. COX ALSO Spent EXTRA HRS IN SURGERY CLEARANCE up other doctors' messes...first time in ten years I can breathe without pain. The horrific pain that consumed every minute of every day and night is gone. Praise The Lord! The Dr's at Johns Hopkins gutted a 20 yr old...she is in a wheelchair ... they told her she has 20 yrs to live ... pray for her ... I pray for you all ... if anyone would like to talk about our journeys, similarities, etc. Send me a msg. Many people prayed for me along the way...All Glory be to God... He does not bring bad upon us ... but He can bring good out of it...TervLover
Posted 9/15/2015 7:31 AM (GMT 0)
Tervlover
I too have Type Ic choladectal cyst in the common bile duct. I also have pancreas divisum and precancerous IPMN cysts on my pancreas head. The doctor said I am not a candidate for surgery because I am only 108 lbs normally, 5' 4" and have other medical issues, one of which is Crohns disease.

He wants to take a wait and see approach with 6 month MRCP. What happens when it turns to cancer? What happens when it blocks the bile duct? Apparently the only operation is the Whipple that has a reputation of terrible aftereffects for most.

I am praying for you and me. I guess we just have to hope the cyst does not grow anymore and block the bile duct. I admit I am scared. I beat breast cancer in 2001 but this one scares me....without the surgery it seems inevetable that it will become cancerous.

Write back.
Posted 9/19/2015 7:35 AM (GMT 0)
TervLover

Any information you can give me regarding the BDC would help. I also have precancerous pancreas head cysts. What kind of operation did you have? A whipple - I am not a candidate for surgery according to the doctor.

Thanks
Posted 2/1/2016 7:03 PM (GMT 0)
Has anyone out there have any info on common bile duct cysts? Wud appreciate advice.

Thanks
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