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Being diagnosed with a Choledochal Cyst
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- Опубликовано: 7 янв 2018
- This is for anyone who has gotten a similar diagnosis. I would have loved to see someone's first hand account of dealing with a Choledochal Cyst as an adult to help me in my journey.
I was diagnosed with s type 4 Choledochal cyst about 9 years ago at the age of 21. Went in for an 8-hour surgery and have been fine since apart from having to watch my diet carefully. I actually became lactose intolerant after the procedure. I go for annual check-ups because I was told that there is no cure so it has to be closely monitored. Thanks for the video, its good to know that we are not alone in this considering how rare the condition is.
Oh wow. See my surgeon didn't say anything about annual appointments. But it would make sense to do that. I have noticed some foods mess with me in a way they didn't before surgery.
@Takalani Sato I too have type 4 choledochal cyst which is more rare compared to type 1 as per surgeon. Surgery advised. How are you feeling post surgery?
@@shwethajayaram5673 I have recently been diagnosed with 4b Choledochal cyst and wondering if you had your surgery and how you are doing
My daughter has this too and she's 12 and please pray for her, I support to some people who's gone through with this and always remember everyone be strong and be brave and don't forget to pray to God because he is always with us loving,guiding,protecting and taking care of us no matter what
I am definitely praying for her. Will she have surgery soon?
Mam namastey from India how’s ur child right now actually my child was having choledochal cyst type 4A in dec 2020 she had her surgery but I am still very worried regarding her health
Both my dad and I had choledochal cysts. He had a type 1 and I had a type 4. He was diagnosed at age 36 and his cyst was 10 cm, while I was diagnosed when I was 13. I had that pain you talked about for years until doctors finally took me seriously. My surgery went well, but now some of my cysts have returned and I might need a liver transplant. But, my dad's surgery went great and now he's completely healthy. I'm just another rare case!
Oh my goodness. I hope you are able to find a remedy for them coming back. I didn't know that was something that could happen.
How are you now? And how is your dad doing?
I had this all the pain you where Describing sounded like what I had. The doctors said I had had it since I was born which made sence because I used to always get "stomach bugs" And throw up a lot since I was a toddler then then they finally diagnosed me and I had surgery that took 8 hours when I was 8 years old I'm 14 now and just have a really large scar on my abdomen. Also every 6 months I have to go to Birmingham children's Hospital to get a ultrasound and blood test to make sure everything's ok.
Omg, see I never had those kind of issues as a kid. Im so glad you are better now! Do you have to do anything other than the ultrasounds since surgery?
Super helpful thank you for taking the time to make this video
I am glad it helped
Hi! I had an undiagnosed choledochal cyst all throughout my childhood (about ten years) and I got surgery for it when I was 14. I experienced the pain you describe for years. I’ve never encountered anyone who’s gone through this.
I have been in contact with so many people because of these videos. I was so shocked, especially after my doctor's told me how rare it was .
Just found out I have this to and am waiting for my follow up with my doctor, probably to schedule surgery. Thank you so much for this video.
I hope the process goes smoothly for you! How did you find out you have it?
@@alexismason5153 I had a gallstone attack last year and had my MRCP follow up scan last month. I go in to see my doctor tomorrow. Trying not to freak out. Finding your video is helping me calm my nerves, I did not expect to find a personal journey by another black woman. Social media pisses me off sometimes but other times it is a gift. Thank you again.
@@polf.8397 I couldn't hardly find anything out there when i found out what i had. But there is a little community of us, and in posting these i was able to cope a little better with everything! You stay strong! And please reach out if you need to talk, because i know what you are going through is not easy !
@@alexismason5153 I will. Thank you again Alexis :)
@@alexismason5153 Had my appointment. As much as I tried to steel myself, I still got a huge lump in my throat when my doc started talking about the eventual cancer risk. Overall my doc was very positive. Thank goodness my husband was there to be my spokesperson much like your mom. Good news is, as of right now there is no urgency for surgery but it will have to happen eventually so we need to plan it. We also have another appt to schedule with a liver specialist (the one who will actually perform the surgery.) Just wanted to give you an update. Thanks again from me (and my husband!!)
How is life after the surgery?
Things have e gone great. I didn't have any complications. Just still healing up my scar.
My 4 year old daughter underwent type 4 cc surgery a week back.
Hi Alexis! I also was diagnosed with a choledochal cyst. I was in my 20s when diagnosed but told I was born with it, and that most of us were. I had my surgery 13 yrs ago in 2006. I created a group on fb years ago for those of us with this rare condition, Choledochal Cyst Support Group if you would like to join. There's now around 100 of us, some with a cyst, some with a loved one with the cyst. There are a few parents with children that have the cyst. Some have had the surgery and some have not yet. It's a wonderful group and we would love to have you join and share your experience! Great video and informative! Would be great to see how everyone does post surgery and what the long term prognosis is since there isn't much known about this issue. I have shared in the group my journey post 13 years. Some issues and more procedures, but overall doing well and no major surgery after thr first one. (Hepaticojuejenostomy with ruen y) Thanks again for the video and raising awareness, just wanted to say hi and let you know you are not alone! I havent met anyone in person that has had this cyst or surgery, so it's nice to connect with someone who understands!
I believe i joined this group a few months ago. It truly does help to have a community we can go to. I have been doing well post surgery as well but i do have some digestive issues that i didn't have before. Thank you so much for reaching out! 💜
Awesome Alexis! I wasn't sure, thanks for letting me know you are in the group already! Hard to keep track of everyone lol. 😊
Will this come again after surgery im scared myy baby 1 yr having this
@@Kp0476 it should not return after surgery, but discuss this concern with your doctor. ❤️
I had mine removed last summer. It’s been QUITE a journey 😭😭😭
I know the feeling! If you don't mind me asking what does your incision look like? Im always curious for others with the same surgery
@@alexismason5153 I have a large incision on my right side (middle of the abdomen). It goes from my side to my belly button area and it's still healing....it's extremely bumpy (scar tissue underneath) but isn't as inflamed as it was originally. You can see little dots around the incision where the staples were. I also have the gallbladder scars (separate surgery months before this one).
Ohh wow, all the folks i've come across how had the same surgery only have the scar on the abdomen. It has been so interesting to learn the similarities and differences. My scar starts right in the center of by abdomen, goes down to my belly botton then takes a left. Have you had any symptoms after surgery?
Alexis White Mine is a horizontal incision about two inches above my belly button and goes 7-8 inches to my side (right side). Its lumpy and gross. I still don’t have any feeling under the scar...but randomly burns so hopefully the nerves are finally healing. I lost a lot of weight after the surgery (15 lbs before the surgery, another 10 while in hospital then another 10-15 after that) and I have problems with digestion. I can’t eat fatty foods without nausea and i “dump” (VERY STRONG stomach spasms) when I eat carbs. I had my gallbladder removed in a separate surgery about two months prior to this one...
Join choledhocal cyst group on FB .lot of people and information there. How is life after surgery? I have it and going for surgery
Hello, I'm so scared. A type 1 choledochalcyst was found during an MRI. I had my gallbladder out 11 years ago. But my choledochalcyst is 7.2mm and my doctor referred me to a specialist who won't see me until I have surgery. I have pain on both sides but it's on my rib cage. The doctor pushed on my rib and it hurt like crazy.
My 5 year old daughter was diagnosed with this last month. She have surgery tomorrow to remove it. 😥
how is your daughter doing now my son is 2 years old and also has a cyst. type 3. what symptoms did your daughter have?
Will this come again after surgery im scared myy baby 1 yr having this
I love you
Has everyone here had symptoms? They found mine mistakenly. I have no symptoms whatsoever.
@@brittanykerkhoven8531 I had no symptoms for 24 years, then out of nowhere the gallbladder pain started. Most folks that have commented have had food triggered symptoms.
@@alexismason5153 how are you doing now? Do any foods bother you?
@@brittanykerkhoven8531 I just recently started having similar symptoms after surgery in 2018. I am still in the exploration phase to se if it's related. Until now I had to lasting affects.
@alexismason5153 that's scary. I hope you are healthy. Please keep us updated girl. God Bless
❤️
Thank you T'T!
Hii alexix... My daughter is 3 yrs old n diagnosed with type second choledochal cyst... I m very scared by this surgery process ..just wnn to ask can a 3yr old girl will be able to live normal life after this surgery..
Hello, I'm so sorry your baby is going through this. Unfortunately I can't speak on how this surgery impacts a 3 year old because my cyst went undiscovered until I was an adult. I pray that things go well for her.
Hi, it’s Uday from India, I am medical student, I had the same symptoms u had in 2019, then I was diagnosed with type 1 cyst, they did the open surgery , I have a huge scar from xiphisternum to pubic symphysis ,that was very painful post operation but every thing is fine now , the only thing for which I am worried for any scar complications like hernia or the connections they made with the intestines,
Hello Uday, I am glad you had a successful surgery. Adhesion was something i was very afraid of, but I think i avoided them. Did you have any lasting symptoms after surgery?
@@alexismason5153 yeah I had fever for 10-15 days and vomiting ,rest was fine
@@udaygupta5349 hi maine bhi same opreation kiya hai.. january 14 2022 ko .. after opreation muje pet main pain hain
Same problem, kindly share phone number
i have this! i have not gotten surgery. message me! i have found a LOT to help with digestion
Faye Dreamer Hi, I hope you are feeling well. My email is lexi.iman@gmail.com if you wanted to reach out I'd be happy to talk to you!
Hi can you message me?
My sister has type one and gallstones she hasn't had surgery as yet.... I know you wrote this comment a few years ago, but if possible, I would like to know your remedies to help with digestion.... Please
Wow i didnt know this was so common but yet rare..they found mines in the VA and said ive probably had it since i was kid...which would make since i always had upper right abdominal pain...i throw up stomach very sensitive...i see alot veterans are getting this way...im still getting a second opinion...but im very sensitive to spicy foods, beef, pork, fried foods etc...i cant even enjoy black pepper lol
Hey I hope your journey with this gets better. Those food sensitivities are a kicker. My doctor said the same thing about me having it as a kid, and I have met lots of other folks who had the same experience. I am a part of a facebook group that is all about the Choledochal cyst and you'd be surprised at how many parents are on there saying their child was diagnosed with it. Best wishes to you
@@alexismason5153 oh wow interesting...so how did the post surgery go...om suppose to have mines in December...
@@lilripsta1995 I still noticed some food sensitivities right after but not nearly as bad. Do you know if they are going to try to do it laparoscopic? I would say this far post surgery I don't have any lasting effects.
@@alexismason5153 yeah they said it could be an option but I don't know yet
@@alexismason5153hey so what foods did you become sensitive too like pre and post surgery or is it about the same...I've been reading different reviews and people saying theyre sensitive to stuff they wasn't sensitive to before
The doctors seen it via ultrasound on my baby fine time to tell me at 36wks pregnant. They want him to have surgery at 1 week old. I don't know what I'm gonna do. I don't want him to have surgery that early. I don't want him to be in pain an unable to tell me either. I'm stuck
I could not imagine being in that kind of situation 😔 did they give you an alternative?
@@alexismason5153 no not one the only solution is surgery. I'm just confused as to how they can tell be going through my body to and through his I really hope it's a mistake but that'll probably make me even more upset because they seem extremely adamant about it being a choledochal cyst. How are you doing? Your videos gave me more insight than the doctors did.
@@desireex5613 They much be very sure since they are so adamant. I had to come to a lot of answers own just because it is so rare, but i did find a lot of info about it being found in children. Has is caused any issues in your pregnancy?
@@desireex5613 same happened with me! My son had surgery at 3 weeks old and thank God he’s a healthy 5 year old with annual checkups.
Hello mam Actually my daughter is of 5 year age and she was having abnormal high junction of pancreatic duct and CBD with abnormally dilated long common channel measuring approx.13mm with joining of the pancreatic duct with common bile duct on december and choledochal cyst type 4a she had an surgery on 9/12/2020 now what precautions I have to take in future regarding her diet and everything what she can eat & what she can not.Thanking you.
Hi! I am sending well wishes for your daughter, that sounds like a lot to go through at her age. The only difference I have noticed is that i sometimes can't tolerate gluten. Other than that my diet has gone back to a normal state with no restrictions.
@@alexismason5153 I am from India u r doing good job mam thanks mam god is everywhere with u and with us
@@AbhaySingh-qi3fc I really appreciate that! Sending love, and healing from the US!
@@AbhaySingh-qi3fc Hi Abhay Singh, going through this at such age must be tough for both parents and kid. Sending best wishes to your entire family and especially to the little princess who is bravely fighting it. I am a mom and I have been said to have choledochal cyst type 4a recently. I din't know I had this cyst in my body all these years, though I thought it was all gastritis symptoms since many years. Can I please ask you if your kid had a laproscopic surgery or an open surgery? Also did they operate liver part of it?
@@shwethajayaram5673 thanks mam
I am from India, I got surgery well
Hi there, how did the surgery go for you?
Good, what you have a any problem after surgery
@@sanjibkalita73 no problems other than needing to change my diet a bit for a few month because a lot of things were upsetting my stomach
Ges problem is common ,
Hi .. am indian same problem I have a cholodochal cyst tyep 1 n 4 mixed .. doctor say me surgery very argent to me my health plz help me .. after surgery how feel you .. now your better
Hi! I am so sorry to hear that you are going through this. I am about 2 and a half years post surgery, and I don't have any complications. Right after surgery there was the usual pain, but nothing out of the normal, i felt 50% back to myself around 3 month after surgery and 100% after about a year. Please let me know if you have any other questions, i hope your treatment plan helps you 🙏🏽🙏🏽
@@alexismason5153 thank u Alexis .
@@alexismason5153 cholodochal cyst surgery time ? General Anesthesia yaa local Anaesthesia
My cholodochal cyst 18.8 mm n how Big ur cyst size ?
@@kirtikamalpatar509 It was supposed to be a 3 hour surgery but it turned into a 6 hour surgery, and they put me under for it because it was an open surgery, they could not do it laparoscopic because of the positioning.