Re: Pseudocysts to Beth

[Guest guest]

Dear Beth,

I'm glad I could contribute something that would give you some

hope for better days.

A small part of my story can be read at the website I've listed

below. This only covered the first year of my trials with CP and

so much happened during the months after this story was

written. I've given Karyn the updated complete version but she

just hasn't had the time to put it on the website yet.

Trying to make it brief here.....hahaha..for those that know me,

they know once I get started on this, I'm rarely, if ever, BRIEF!

I was diagnosed with acute pancreatitis in April of 2001. At the

time I had this attack which took me to the hospital, two

pseudocysts were found in my pancreas. They had formed after

an untreated and undiagnosed attack I'd had about 6 weeks

earlier, and were already matured. One was about 3 x 8 cm. and

the larger was 6 x 4 cm. They were only found because a

CT-scan had revealed a large mass in my pancreas and the

doctor wanted a closer look, so they decided first to do a

CT-scan guided fine needle aspiration and biopsy. Once they

had me in there and the needle was placed, they determined it

was a pseudocyst and they did a partial drainage of the largest

pseudocyst which was located in the tail of my pancreas. The

one in the head was the smaller one and they left it alone.

The doctors drained it down to 5.8 cm. That's all they could drain

at the time because they weren't prepared to do full drainage at

the time they did this biopsy. It was decided that we would wait

and see if the pseudocysts would resolve further on their own,

other than do any invasive procedures. This worked well, and

during the next eighteen months, they did resolve, both all the

way down to 2 cm. On December 23, 2002, they were only 2 cm.

and it looked like a bright future. The next month (Jan. 2003) I

started having daily problems with pain, was having significant

loss of weight (30 lbs. in 3 months), vision problems, just an

overall painful decline. My weekly complaints of blurred vision,

excessive thirst, frequent urination and weight loss fell on deaf

ears and blind eyes with my doctor. Well, not totally, he just kept

telling me that he thought it was caused by a change in my

medication for two months and to wait for the medications to

begin working.

On March 11, 2003 I was in such a deteriorated state and acting

so lethargic and weakened, plus had vomiting and nausea, that

my husband took me to the emergency room. I would not and

could not have done it myself. I was in diabetic ketoacidosis

shock, near coma state, and had been getting this way for well

over two months....just rapidly sliding downhill. My blood sugars

were 1,000 upon admittance, 38 a few hours later, 880 a few

hours after that. I emerged from the hospital four days later with

a burned-out pancreas, and type 1 brittle diabetes.

A CT-scan 4 weeks later showed that the pseudocysts which

had resolved so nicely had filled back up again to about triple the

size they were in the very beginning. My new gastroenterologist

did several tests and after much deliberation decided that we

would wait and see what they looked like after 6 weeks. The next

CT-scan showed that they had matured, and were 6 x 5 cm. and

4.5 cm, the smaller of the two was still the one in the head. For

several weeks we discussed surgical drainage, laproscopic

drainage and fine needle aspiration, since he was especially

concerned about the pseudocysts rupturing. We finally mutually

decided to let things wait and see if they would resolve on their

won as they had before, provided that I was not in too much pain

and showed no signs of infection or rupture.

From the very beginning I was aware that sometimes aspirated

or drained pseudocysts can fill back up again, and I had been

doing everything I could to avoid any severe attacks which would

cause this. I had been doing very, very well for about 15 months,

but unfortunately the prolonged and mistreated slide into

diabetic ketoacidosis created a favorable environment that

caused them to fill back up and grow even larger than before.

They way they monitor them is by CT-scan. I've had 11 of them in

the past 2 years, also an MRCP, MRI and ultrasounds. The

CT-scans have been even more definitive than the MRCP as to

showing their status, and the conditions of my calcification.

Unfortunately, the technician at my new doctor's hosptial is not

as experienced with his imaging skills as the technician that did

my first 9 scans at another hospital. It's surprising that one

technician and radiologist can be so far superior to another, but

they are, and we need to remember this when we have a

procedure done and don't get the anticipated results. My last two

CT-scans and MRCP were not as clear nor as definitive as the

first 9, and this caused much delay in reaching a diagnosis to

determine treatment. We all need to remember this, and if

things don't appear they way they should, sometimes it's

necessary to go elsewhere to find a more experienced

professional.

Certainly my pseudocysts are not as large as Barry's. I would

say that once his are treated and resolved or gone, you wouldn't

be out of line to expect a dramatic decrease in Barry's pain and

discomfort. I am still on daily pain management, a duragesic

patch and Percocet 10/325 for breakthrough pain. Thus far, this

has served me well, and (fingers and toes crossed here....now

that's a trick!) I hope that things will continue and improve as

time passes.

I cannot lift heavy objects or do any activity that causes me to

strain, twist or stretch my abdomen. Bending over is not an

option, if I need to pick up something from the floor I have to

squat down first. Forgetting to do this causes big-time trouble!

Sit ups are definitely a no-no! If I need anything carried, I'm

supposed to have someone else do it, and I cannot carry or lift

heavy objects above the waist line. I do bike, swim and walk,

and use 5 lb. hand weights to do upper body toning...but that's

really the extent of it. Can't do any thing to tone or tighten the

abdominal area. I also try to do a lot of rapid stair climbing to

keep my legs in shape, but I have a problem with hypo's if I get

too eager with any of my exercise, so I have to really watch what

I'm doing.

I hope this helps answer some of your questions, Beth. Please

feel free to write to me offline if you have any others, I'd be glad to

help.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

http://www.pancassociation.org/ourstories/#Heidi

Note: All comments and advice are personal opinion only, and

should not be substituted for professional medical consultation.

> You have pseudocysts too?! May I be nosey ... do you mind my

asking what is to happen with them? How are you dealing with

them? You're the first person I've spoken with who is dealing

with pseudocysts.

> Barry's surgeon told us people can and do live with them.

Also, if the cysts are small enough, they can dissolve on their

own (maybe the miracle we are waiting for). His cysts are

around 11 cm in length.

If they are aspirated, they usually come back I've read.

>

> Note: All comments and advice are personal opinion only, and

> should not be substituted for professional medical

consultation.