Re: what can cause secondary PSC

[Guest guest]

,

 

Welcome to the group. We are sorry a diagnosis caused you to search us out, but are happy you found us. I was diagnosed 20 years ago and have never had an ERCP, but I certainly believe they could have caused some damage. A liver transplant is an option, but its expensive, there can be complications and there is no guarantee that PSC wont come back. I like to keep a liver transplant as a fall back option only to be used when needed.

 

Ian (52) PSC 89 

I hope you guys approve me soon, I really need to talk to someone,my Dr. is not convinced it is PSC, can one of your intraheptic ducts get damaged due to a very invasive ercp??The reason I ask this is 2 months prior to the ercp I had ct scan that

showed dilated ducts, so I go and get checked out every 6 months!!I wanted another ercp since I had not had one in 14 months, I got severe acute pancreatitis, and was hospitilized for 10 days!! Worsethen any other pain-migraines childbirth, toothaches!! Anyway, a day

after the ercp when I was admitted they did an ct scan and said the bileduct looked like it may have been " nicked " ?? Is this possible.So 2 weeks ago I had mrcp which showed new finding of beaded left

hepatic duct? What other investigating besides another ercp can be done? Oh my email is georgie430 hotmail.com of course the @ sign goes

in between 430 and hotmail. I even edited my email, I dont know why myold email is still up??Please somebody email me!!Thanks,Scared in N.Y.P.S. Is a liver transplant really an option for this disease??

Sincerely,

-- Ian Cribb  P.Eng. (6...

[Guest guest]

,

 

Welcome to the group. We are sorry a diagnosis caused you to search us out, but are happy you found us. I was diagnosed 20 years ago and have never had an ERCP, but I certainly believe they could have caused some damage. A liver transplant is an option, but its expensive, there can be complications and there is no guarantee that PSC wont come back. I like to keep a liver transplant as a fall back option only to be used when needed.

 

Ian (52) PSC 89 

I hope you guys approve me soon, I really need to talk to someone,my Dr. is not convinced it is PSC, can one of your intraheptic ducts get damaged due to a very invasive ercp??The reason I ask this is 2 months prior to the ercp I had ct scan that

showed dilated ducts, so I go and get checked out every 6 months!!I wanted another ercp since I had not had one in 14 months, I got severe acute pancreatitis, and was hospitilized for 10 days!! Worsethen any other pain-migraines childbirth, toothaches!! Anyway, a day

after the ercp when I was admitted they did an ct scan and said the bileduct looked like it may have been " nicked " ?? Is this possible.So 2 weeks ago I had mrcp which showed new finding of beaded left

hepatic duct? What other investigating besides another ercp can be done? Oh my email is georgie430 hotmail.com of course the @ sign goes

in between 430 and hotmail. I even edited my email, I dont know why myold email is still up??Please somebody email me!!Thanks,Scared in N.Y.P.S. Is a liver transplant really an option for this disease??

Sincerely,

-- Ian Cribb  P.Eng. (6...

[Guest guest]

,

 

Welcome to the group. We are sorry a diagnosis caused you to search us out, but are happy you found us. I was diagnosed 20 years ago and have never had an ERCP, but I certainly believe they could have caused some damage. A liver transplant is an option, but its expensive, there can be complications and there is no guarantee that PSC wont come back. I like to keep a liver transplant as a fall back option only to be used when needed.

 

Ian (52) PSC 89 

I hope you guys approve me soon, I really need to talk to someone,my Dr. is not convinced it is PSC, can one of your intraheptic ducts get damaged due to a very invasive ercp??The reason I ask this is 2 months prior to the ercp I had ct scan that

showed dilated ducts, so I go and get checked out every 6 months!!I wanted another ercp since I had not had one in 14 months, I got severe acute pancreatitis, and was hospitilized for 10 days!! Worsethen any other pain-migraines childbirth, toothaches!! Anyway, a day

after the ercp when I was admitted they did an ct scan and said the bileduct looked like it may have been " nicked " ?? Is this possible.So 2 weeks ago I had mrcp which showed new finding of beaded left

hepatic duct? What other investigating besides another ercp can be done? Oh my email is georgie430 hotmail.com of course the @ sign goes

in between 430 and hotmail. I even edited my email, I dont know why myold email is still up??Please somebody email me!!Thanks,Scared in N.Y.P.S. Is a liver transplant really an option for this disease??

Sincerely,

-- Ian Cribb  P.Eng. (6...

[Guest guest]

,I don't know if a duct can get nicked in an ERCP. I have had 11 and that has never happened to me although I have had pancreatitis twice so I feel your pain. I'm sure someone else in the group can answer that question for you. Sometimes the weekends are quiet but I'm sure others will respond to your questions soon.I know that beaded ducts is a classic PSC symptom. So that wouldn't be an unusual finding for someone with PSC. My dr's also went back and forth on my PSC diagnosis for about 6 months. It was a frustrating time for me. Later I found out a lot of the waivering was because my first endoscopist didn't want me to have something incurable and he was trying to come up with a better or any other scenario. Eventually we all got on the same page and all the docs agreed on a diagnosis. As far as other testing, ERCP's and MRCP's are the main ways to see the ducts. A liver biopsy can also be done but it may not show much since your liver can have good or bad spots. Just kind of depends on the area they get in the biopsy.Liver transplants are definitely possible. There are quite a few post-transplant members in the group.Hope you get answers to all your questions. DarcyPSC 07Sent from my Verizon Wireless BlackBerryFrom: "georgie439" Date: Sat, 28 Feb 2009 00:37:21 -0000To: < >Subject: what can cause secondary PSC I hope you guys approve me soon, I really need to talk to someone, my Dr. is not convinced it is PSC, can one of your intraheptic ducts get damaged due to a very invasive ercp?? The reason I ask this is 2 months prior to the ercp I had ct scan that showed dilated ducts, so I go and get checked out every 6 months!! I wanted another ercp since I had not had one in 14 months, I got severe acute pancreatitis, and was hospitilized for 10 days!! Worse then any other pain-migraines childbirth, toothaches!! Anyway, a day after the ercp when I was admitted they did an ct scan and said the bile duct looked like it may have been " nicked " ?? Is this possible. So 2 weeks ago I had mrcp which showed new finding of beaded left hepatic duct? What other investigating besides another ercp can be done? Oh my email is georgie430 hotmail.com of course the @ sign goes in between 430 and hotmail. I even edited my email, I dont know why my old email is still up?? Please somebody email me!! Thanks, Scared in N.Y. P.S. Is a liver transplant really an option for this disease?? Sincerely,

[Guest guest]

,I don't know if a duct can get nicked in an ERCP. I have had 11 and that has never happened to me although I have had pancreatitis twice so I feel your pain. I'm sure someone else in the group can answer that question for you. Sometimes the weekends are quiet but I'm sure others will respond to your questions soon.I know that beaded ducts is a classic PSC symptom. So that wouldn't be an unusual finding for someone with PSC. My dr's also went back and forth on my PSC diagnosis for about 6 months. It was a frustrating time for me. Later I found out a lot of the waivering was because my first endoscopist didn't want me to have something incurable and he was trying to come up with a better or any other scenario. Eventually we all got on the same page and all the docs agreed on a diagnosis. As far as other testing, ERCP's and MRCP's are the main ways to see the ducts. A liver biopsy can also be done but it may not show much since your liver can have good or bad spots. Just kind of depends on the area they get in the biopsy.Liver transplants are definitely possible. There are quite a few post-transplant members in the group.Hope you get answers to all your questions. DarcyPSC 07Sent from my Verizon Wireless BlackBerryFrom: "georgie439" Date: Sat, 28 Feb 2009 00:37:21 -0000To: < >Subject: what can cause secondary PSC I hope you guys approve me soon, I really need to talk to someone, my Dr. is not convinced it is PSC, can one of your intraheptic ducts get damaged due to a very invasive ercp?? The reason I ask this is 2 months prior to the ercp I had ct scan that showed dilated ducts, so I go and get checked out every 6 months!! I wanted another ercp since I had not had one in 14 months, I got severe acute pancreatitis, and was hospitilized for 10 days!! Worse then any other pain-migraines childbirth, toothaches!! Anyway, a day after the ercp when I was admitted they did an ct scan and said the bile duct looked like it may have been " nicked " ?? Is this possible. So 2 weeks ago I had mrcp which showed new finding of beaded left hepatic duct? What other investigating besides another ercp can be done? Oh my email is georgie430 hotmail.com of course the @ sign goes in between 430 and hotmail. I even edited my email, I dont know why my old email is still up?? Please somebody email me!! Thanks, Scared in N.Y. P.S. Is a liver transplant really an option for this disease?? Sincerely,

[Guest guest]

,I don't know if a duct can get nicked in an ERCP. I have had 11 and that has never happened to me although I have had pancreatitis twice so I feel your pain. I'm sure someone else in the group can answer that question for you. Sometimes the weekends are quiet but I'm sure others will respond to your questions soon.I know that beaded ducts is a classic PSC symptom. So that wouldn't be an unusual finding for someone with PSC. My dr's also went back and forth on my PSC diagnosis for about 6 months. It was a frustrating time for me. Later I found out a lot of the waivering was because my first endoscopist didn't want me to have something incurable and he was trying to come up with a better or any other scenario. Eventually we all got on the same page and all the docs agreed on a diagnosis. As far as other testing, ERCP's and MRCP's are the main ways to see the ducts. A liver biopsy can also be done but it may not show much since your liver can have good or bad spots. Just kind of depends on the area they get in the biopsy.Liver transplants are definitely possible. There are quite a few post-transplant members in the group.Hope you get answers to all your questions. DarcyPSC 07Sent from my Verizon Wireless BlackBerryFrom: "georgie439" Date: Sat, 28 Feb 2009 00:37:21 -0000To: < >Subject: what can cause secondary PSC I hope you guys approve me soon, I really need to talk to someone, my Dr. is not convinced it is PSC, can one of your intraheptic ducts get damaged due to a very invasive ercp?? The reason I ask this is 2 months prior to the ercp I had ct scan that showed dilated ducts, so I go and get checked out every 6 months!! I wanted another ercp since I had not had one in 14 months, I got severe acute pancreatitis, and was hospitilized for 10 days!! Worse then any other pain-migraines childbirth, toothaches!! Anyway, a day after the ercp when I was admitted they did an ct scan and said the bile duct looked like it may have been " nicked " ?? Is this possible. So 2 weeks ago I had mrcp which showed new finding of beaded left hepatic duct? What other investigating besides another ercp can be done? Oh my email is georgie430 hotmail.com of course the @ sign goes in between 430 and hotmail. I even edited my email, I dont know why my old email is still up?? Please somebody email me!! Thanks, Scared in N.Y. P.S. Is a liver transplant really an option for this disease?? Sincerely,

[Guest guest]

I also have never heard of an ERCP nicking something, but I don't

know much about them as I have only had two and no longer am able to

have them. I know Beading is a key marker for PSC on MRCP's. There

is also a Cholangiogram but they are invasive and if you have small

duct PSC they are not diagnostic. I have had two biopsies, both

saying PSC, 6 MRCP saying PSC, but several doctors have said those

tests are wrong that it's something else. My last biopsy was sent to

Mayo because of this. If my lab's say PSC, I have a negative AMA

test, have seen a Hepatologist that is knowledgable of PSC and there

is still a question I would ask that my records be sent to Mayo for a

consult. Just a suggestion, though. Welcome to our group

Dawn

>

> ,

>

> I don't know if a duct can get nicked in an ERCP. I have had 11

and that has never happened to me although I have had pancreatitis

twice so I feel your pain. I'm sure someone else in the group can

answer that question for you. Sometimes the weekends are quiet but

I'm sure others will respond to your questions soon.

>

> I know that beaded ducts is a classic PSC symptom. So that wouldn't

be an unusual finding for someone with PSC.

> My dr's also went back and forth on my PSC diagnosis for about 6

months. It was a frustrating time for me. Later I found out a lot

of the waivering was because my first endoscopist didn't want me to

have something incurable and he was trying to come up with a better

or any other scenario. Eventually we all got on the same page and

all the docs agreed on a diagnosis.

>

> As far as other testing, ERCP's and MRCP's are the main ways to see

the ducts. A liver biopsy can also be done but it may not show much

since your liver can have good or bad spots. Just kind of depends on

the area they get in the biopsy.

>

> Liver transplants are definitely possible. There are quite a few

post-transplant members in the group.

>

> Hope you get answers to all your questions.

>

> Darcy

> PSC 07

> Sent from my Verizon Wireless BlackBerry

>

> what can cause secondary PSC

>

>

> I hope you guys approve me soon, I really need to talk to someone,

> my Dr. is not convinced it is PSC, can one of your intraheptic

ducts

> get damaged due to a very invasive ercp??

>

> The reason I ask this is 2 months prior to the ercp I had ct scan

that

> showed dilated ducts, so I go and get checked out every 6 months!!

>

> I wanted another ercp since I had not had one in 14 months, I got

> severe acute pancreatitis, and was hospitilized for 10 days!! Worse

> then any other pain-migraines childbirth, toothaches!! Anyway, a

day

> after the ercp when I was admitted they did an ct scan and said the

bile

> duct looked like it may have been " nicked " ?? Is this possible.

>

> So 2 weeks ago I had mrcp which showed new finding of beaded left

> hepatic duct? What other investigating besides another ercp can be

> done? Oh my email is georgie430 hotmail.com of course the @ sign

goes

> in between 430 and hotmail. I even edited my email, I dont know

why my

> old email is still up??

>

> Please somebody email me!!

>

> Thanks,

> Scared in N.Y.

> P.S. Is a liver transplant really an option for this disease??

>

> Sincerely,

>

>