New Member Need Recommendations

[Guest guest]

Hi to all,

My name is and I am fairly new to this wonderful support group.

I read every e-mail and I pray for everyone. I really would like to

put some of my story/problems out there for all of you " experts " (in

my eyes most of you are) to give me advice, recommendations, etc. about.

I will try to be brief.

My problems started 3 years ago. Severe pain, doubling over, etc., etc.

Two years ago, I had my gallbladder removed. I got NO RELIEF at all after this.

After seeing my GI doc multiple times and him telling me that I

most likely had Sphincter of Oddi dysfunction (but he didn't want me to

have an ERCP to find out for sure because of the risk of pancreatitis) I

finally insisted because I couldn't handle the pain and sickness anymore

(I am 33 years old with 2 boys aged 4 and 6)!! Anyway, I was sent to Indiana

University to the specialty center there were I underwent my first ERCP.

My common bile duct pressure was 80 (should be less than 40) and my pancreatic

duct pressure was 120. I had two sphincterotomies with stents placed. I

got about 6 weeks of " relief " was all. I subsequently had several more

and was hospitalized for CP from then on.

I had major surgery (5 hours) on August 1, 2002, to supposedly cure my SOD. My

surgeon was a pancreatic surgeon who previously worked with Dr. Sutherland !

When I first met with her she spent 1 1/2 hours with my husband and I going over

my options, which included a sphincteroplasty and ductoplasty of my pancreatic

duct or a Whipple!!!!! I am now so upset and don't understand why she would

have done a Whipple on me when she said that I did not have CP because " your

amylase and lipase are not elevated. " Hello, she is supposed to be a

pancreatic surgeon!!!!! Plus, when I had my ERCP three months prior at IU my

diagnosis was " equivocal chronic pancreatitis. " Law suit????? I guess I should

be thankful that she didn't do the whipple, but I fell like I had surgery for

nothing and could have ended up in really bad shape.

I would like to quote a couple of CT scan reports and get any information,

advice, etc. on what all of you think. By the way, thanks for taking the time

to read this. It is ending up longer than I had wanted it to be.

On 6/25/02, my CT scan states, " subcapsular 1.5 cm cyst at the ventral superior

aspect of the spleen. " " There is a subcentimeter nodule in the right adrenal

gland. " " There is a 2 cm ovarian cyst. " " There is a 5-6 mm rounded region

within the right adrenal gland medial limb. " " There is a 1 cm anterior upper

splenic cyst present. " " The soft tissues demonstrate NEW onset of subcutaneous

edema in the right periumbilical and flank subcutaneous tissues. "

Conclusion: Mild subcutaneous edema in the periumbilical and right flank

subcutaneous tissues anteriorly. Small probable adenoma of the right adrenal

gland. Cyst of pseudocyst of the upper spleen anteriorly. Probable anterior

uterine fibroid measuring 1.7 cm in diameter.

Ok, I had another ERCP after that CT scan on November 4, 2002, for which I was

hospitalized for three days with acute pancreatitis. Another CT was done at

that time and these things are what I am concerned about. My doctor never

really said anything about it.

This is all quoted from my report: There is a small amount of fluid in the

gallbladder fossa. There is mild edema of the inferior portion of the

pancreatic head. In the soft tissues surrounding the pancreatic head, there is

stranding of the adjacent fat. There is a small amount of fluid within the

right perinephric and posterior pararenal spaces. This fluid may be related to

the adjacent inflammation seen in the pancreatic head indicating pancreatitis.

The fluid surrounding the right kidney could originate from the right kidney

such as from a prior urinary tract infection or stone disease.

Impression: There are fluid collections and there is edema surrounding the

pancreatic head and extending into the right perinephritic and posterior

pararenal spaces and into the gallbladder fossa. These findings suggest acute

pancreatitis with peripancreatic fluid collections. Small collections of air in

the region of the common bile duct.

My ERCP report from November 4, 2002: The main pancreatic duct appears slightly

dilated. There appears to be relatively-abrupt termination of the distal

pancreatic duct in the pancreatic tail area and the possibility of a small stone

or other obstructing lesion in this area. There is moderate filling of the

secondary and tertiary biliary ducts within the pancreas which is somewhat

unusual and may be a reflection of pancreatitis. There appear to be several

small filling defects within the pancreatic ductal system in the head of the

pancreas which may represent small stones or possibly small air bubbles. The

common bile duct and common hepatic duct have mildly dilated appearances. There

is a rounded filling defect within the distal common duct on several films.

CLINICAL CORRELATION REGARDING THIS FINDING IS NECESSARY.

I am lost. Along with SOD and CP I also have a loop in my pancreatic duct,

which is congenital (now, my surgeon knew that was there so why did she think

she could fix the SOD, keeping my pressures down, when they will always build

back up in that loop??????? I have very high triglycerides and low thyroid. I

also have a family history of pancreatitis in my grandfather, but he was an

alcoholic.

I am sorry this is so long, but I have been wanting to put this out there for

some advice for a long time and finally decided to do it tonight because I have

been thinking about this constantly and know that so many of you know so much

and are so knowledgeable that I wanted some opinions.

Thank you all so much. I can't want to hear from anyone.

My prayers are with everyone with this horrible disease.

Sincerely,

Templin

[Guest guest]

Hi to all,

My name is and I am fairly new to this wonderful support group.

I read every e-mail and I pray for everyone. I really would like to

put some of my story/problems out there for all of you " experts " (in

my eyes most of you are) to give me advice, recommendations, etc. about.

I will try to be brief.

My problems started 3 years ago. Severe pain, doubling over, etc., etc.

Two years ago, I had my gallbladder removed. I got NO RELIEF at all after this.

After seeing my GI doc multiple times and him telling me that I

most likely had Sphincter of Oddi dysfunction (but he didn't want me to

have an ERCP to find out for sure because of the risk of pancreatitis) I

finally insisted because I couldn't handle the pain and sickness anymore

(I am 33 years old with 2 boys aged 4 and 6)!! Anyway, I was sent to Indiana

University to the specialty center there were I underwent my first ERCP.

My common bile duct pressure was 80 (should be less than 40) and my pancreatic

duct pressure was 120. I had two sphincterotomies with stents placed. I

got about 6 weeks of " relief " was all. I subsequently had several more

and was hospitalized for CP from then on.

I had major surgery (5 hours) on August 1, 2002, to supposedly cure my SOD. My

surgeon was a pancreatic surgeon who previously worked with Dr. Sutherland !

When I first met with her she spent 1 1/2 hours with my husband and I going over

my options, which included a sphincteroplasty and ductoplasty of my pancreatic

duct or a Whipple!!!!! I am now so upset and don't understand why she would

have done a Whipple on me when she said that I did not have CP because " your

amylase and lipase are not elevated. " Hello, she is supposed to be a

pancreatic surgeon!!!!! Plus, when I had my ERCP three months prior at IU my

diagnosis was " equivocal chronic pancreatitis. " Law suit????? I guess I should

be thankful that she didn't do the whipple, but I fell like I had surgery for

nothing and could have ended up in really bad shape.

I would like to quote a couple of CT scan reports and get any information,

advice, etc. on what all of you think. By the way, thanks for taking the time

to read this. It is ending up longer than I had wanted it to be.

On 6/25/02, my CT scan states, " subcapsular 1.5 cm cyst at the ventral superior

aspect of the spleen. " " There is a subcentimeter nodule in the right adrenal

gland. " " There is a 2 cm ovarian cyst. " " There is a 5-6 mm rounded region

within the right adrenal gland medial limb. " " There is a 1 cm anterior upper

splenic cyst present. " " The soft tissues demonstrate NEW onset of subcutaneous

edema in the right periumbilical and flank subcutaneous tissues. "

Conclusion: Mild subcutaneous edema in the periumbilical and right flank

subcutaneous tissues anteriorly. Small probable adenoma of the right adrenal

gland. Cyst of pseudocyst of the upper spleen anteriorly. Probable anterior

uterine fibroid measuring 1.7 cm in diameter.

Ok, I had another ERCP after that CT scan on November 4, 2002, for which I was

hospitalized for three days with acute pancreatitis. Another CT was done at

that time and these things are what I am concerned about. My doctor never

really said anything about it.

This is all quoted from my report: There is a small amount of fluid in the

gallbladder fossa. There is mild edema of the inferior portion of the

pancreatic head. In the soft tissues surrounding the pancreatic head, there is

stranding of the adjacent fat. There is a small amount of fluid within the

right perinephric and posterior pararenal spaces. This fluid may be related to

the adjacent inflammation seen in the pancreatic head indicating pancreatitis.

The fluid surrounding the right kidney could originate from the right kidney

such as from a prior urinary tract infection or stone disease.

Impression: There are fluid collections and there is edema surrounding the

pancreatic head and extending into the right perinephritic and posterior

pararenal spaces and into the gallbladder fossa. These findings suggest acute

pancreatitis with peripancreatic fluid collections. Small collections of air in

the region of the common bile duct.

My ERCP report from November 4, 2002: The main pancreatic duct appears slightly

dilated. There appears to be relatively-abrupt termination of the distal

pancreatic duct in the pancreatic tail area and the possibility of a small stone

or other obstructing lesion in this area. There is moderate filling of the

secondary and tertiary biliary ducts within the pancreas which is somewhat

unusual and may be a reflection of pancreatitis. There appear to be several

small filling defects within the pancreatic ductal system in the head of the

pancreas which may represent small stones or possibly small air bubbles. The

common bile duct and common hepatic duct have mildly dilated appearances. There

is a rounded filling defect within the distal common duct on several films.

CLINICAL CORRELATION REGARDING THIS FINDING IS NECESSARY.

I am lost. Along with SOD and CP I also have a loop in my pancreatic duct,

which is congenital (now, my surgeon knew that was there so why did she think

she could fix the SOD, keeping my pressures down, when they will always build

back up in that loop??????? I have very high triglycerides and low thyroid. I

also have a family history of pancreatitis in my grandfather, but he was an

alcoholic.

I am sorry this is so long, but I have been wanting to put this out there for

some advice for a long time and finally decided to do it tonight because I have

been thinking about this constantly and know that so many of you know so much

and are so knowledgeable that I wanted some opinions.

Thank you all so much. I can't want to hear from anyone.

My prayers are with everyone with this horrible disease.

Sincerely,

Templin