Re: Surgery for pseudocysts

[Guest guest]

Kurt,

In answer to your post, I do have two pseudocysts and have contemplated

having surgery to reduce them. When I had my first documented acute attack

in May '01, I entered the hospital to see a general surgeon who immediately

sent me down to Radiology for my first CT-scan. I had been referred to the

surgeon by a very confused GP at the local 24-hour walk in clinic, where I had

initially gone, after waking up that morning in severe, disabling pain. When I

tried to get up, I discovered that I couldn't stand, bend or walk without

excrutiating pain. There was a hard lumpy mound in my abdomen, just to the

left of my navel that hadn't been there when I'd gone to bed with an upset

stomach eight hours earlier. Thus began my journey with CP.

Six weeks prior to this hospital visit, I'd been ill with stomach distress, and

didn't see a physician because I thought it was food poisoning. I'd had

sporadic problems with nausea, diarrhea and some vomiting through the

previous year, but usually never all at the same time. I never made the

connection that these problems were necessarily food related, since I'd had

similar trouble 20 years previously, and just thought that it was that

" sensitive

stomach " acting up again. It's been concluded that this weekend of illness

was the first acute attack which began the process of the pseudocyst's

formation.

I was 49 when this happened, now I'm 53. Because I had acknowledged to

the surgeon to have consumed alcohol in my past, his initial diagnosis was

automatically written down as alcohol related, (of course)! After considerable

testing, monitoring and study over the past years, this diagnosis was changed

by my attending Gastroenterologist and the Mayo Clinic Pancreatologist to

" Idiopathic Chronic Pancreatitis " .

The CT-scan in 5/01 showed two inflamed, angry pseudocysts in the

pancreas, one in the tail and another near the head. My pancreas was

enlarged and showed severe calcification throughout, with considerable

inflamation. Another thing noted was the abnormal positioning of the gland,

instead of laying in a transverse position across my body with the head on the

upper right side of the abdomen by the gall bladder and the tail behind the

spleen on the left, the head of my pancreas is in the upper abdomen directly

above my navel on the right and then snakes down behind the intestines, with

the tail located to the lower left of my navel. This abnormal positioning has

caused much difficulty when considering any surgical intervention or

drainage. Because of the abnormal positioning, and my current physical

status, the doctors have refused to take the risk endangering my life by

performing surgery, and current drainage apparatus does not conform to the

locations of my pseudocysts, so even that isn't an option for me. My problems

cannot be solved or pacified by stenting.

Since that day I've seen another surgeon in Savannah, Georgia and a

Pancreatologist who specializes in pseudocysts at the Mayo Clinic for

consultation about surgical options or drainage options for these two

pseudocysts, which I still have today, nearly four years later. My pancreas

burned out in March of 2003, leaving me a brittle, type 1 diabetic. When my

pancreas was still functional, the pseudocysts themselves caused me

substancial pain and discomfort, over and above that already caused by the

chronic pancreatitis. Now they are they only cause of my pain and acute

attacks. During the years they have reduced in size, only to enlarge again,

several times to clinically severe sizes where there are concerns about

rupturing. At this time, one pseudocyst has reduced down to a non-

threatening size of 3 cm., while the other is considered hazardous at

approximately 6.5 x 6.8 cm. I have no gall bladder problems and normal

kidneys.

Now that I've given you this brief background of my pseudocyst history, I will

comment on your questions, to the best of my ability. There is a long

description of all of my history that you can read, if you care to, and if you

have

the time.....lol!! It's located at the url listed beneath my signature. You

must

understand that I have no medical training whatsoever, everything I have is

knowledge gained by research, reading, discussion with several specialists

and my own personal experience.

The ERCP is the most advanced diagnostic process available to look closely

and clearly at your pancreas, the ducts and other organs that would be

affected by your current pancreatitis situation. The only other procedure that

can be closely definative for seeing all that the ERCP can, would be the

MRCP, which is totally non-invasive. Next down in line would be the CT-

scan, or MRI. Even with a highly trained and experienced Endoscopist,

patients can expect some risk of a pancreatitis attack after the procedure.

ERCP's rank 7th in the list of causes of pancreatitis attacks. The benefits of

this procedure, though, can far outweigh that risk. Many of our members have

had repeated ERCP's, with few problems. Those that have had an attack

afterward are here to tell their stories, and I hope they will contribute their

opinions and experiences. Even if the patient does have an attack, he would

be in a controlled environment where all precautions would be made, and the

attack could be controlled by hospital staff, with immediate medication and

care. Under these conditions, the attack is usually quickly subdued and of

minimal consequence.

Drainage or removal of a pseudocyst the size of your largest one would be

optimal. If it had been possible for me, I would not have hesitated to have

drainage procedures performed. Even at 6 cm., there are possible risks of

rupture of a pseudocyst, one as large as yours would be of much more

concern. A ruptured pseudocyst is an immediate medical emergency, with

very little time for correction, and usually causes severe life-threatening

conditions for the patient. Many patients don't survive the resulting infection

and organ shut down that the rupture creates.

Since you now seem to have few problems with pain and little interference of

your daily activities, I'm sure that your decision to proceed with any medical

intervention is a difficult one. Either way you proceed, there is risk

involved,

so you will have to determine which is most important to you. My only fear

would be of that unexpected and unwanted rupture, and the consequences of

that. Another consideration that may influence your decision would be that if

your present stable condition changed into a more chronic condition that most

of us have experienced.

Or, since your films showed so much initial necrosis, and then you went

through such an increase in pain from August to October, then a significant

decrease, it may be that you are heading for full pancreas burn out. With all

these variables on the table, your decision making process must be truly

confusing!

I'm not sure that what I've said has been of much help to you. Hopefully you

will be answered by other members who may have more insight. There are

only a few of us that have pseudocysts, at least of those who are active

posters, so it may take some time before you hear from anyone else. The only

thing that really disturbs me is the size of that largest

pseudocyst.....drainage

would be of such benefit and would greatly reduce your risks of rupture. I

hope you can make the right decision for yourself, and that you will share both

that, and any other news you may have about your condition with us

whenever it's convenient. Meanwhile, please don't hesitate to post again with

any questions.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

SE Regional Rep., PAI

http://pancassociation.org/anthology.htm#Heidi

Note: All comments or advice are based on personal experience or opinion,

and should not be substituted for consultation with a medical professional.