Re: and her new pain/resend

[Guest guest]

Hi everyone;

This is 's mom writing here. I am sorry to be away for so

long. Too much going on in my life right now. I would like to ask

everyone that has had the surgery a couple of questions. I can

actually say that is no better off right now then she was

before. had the surgery on May 4th 2004. She will attest to

the fact that she no longer has pancreas pain, but a whole new host

of pain and problems. She has been in the hospital 5 times since

the surgery. She has continuous pain now and takes around 50 mg's

of Methadone a day, which by the way does nothing to ease the pain.

The pain team wants her off the methadone, I can only get so far

with reducing the amounts and then we are back to square one, it is

a vicious cycle. also has severe pain after she eats

anything and her bowels only work when they want to. She takes

Kristalose, colace, senna and any other forms to make her

eliminate. She will have a fit is she finds out that I posted this

on the site. The lowest her pain is on a daily basis is a 6 and the

highest is a 10. The doctors don't know what to do, they say to

keep her home and not to bring her to the hospital. This is easier

said then done, it is not their child in pain. She is pretty much

taboo to the doctors around here and they are stumped once again. I

am tired of hearing from everyone that you are the one that allowed

her to have the surgery and it was supposed to work. Well it hasn't

worked yet, because I think that they are missing a key piece to

this puzzle. I guess that I had better get to the questions.

1. Does everyone have this new pain that she talks about in her

upper left side? Go to your last rib and then press, this is were

here pain is constantly. Some days I can feel it throbbing just by

laying my hand on it.

2. Does anyone still have their spleen after having the surgery?

My question is could the spleen be so compromised that it is still

sending out pain signals to the brain.

3. For the people who don't have their spleen do they have the same

pain?

4. Has anyone ever had a block on the intercostal nerve? Did it

work? GI feels that this is the problem and pain team says that it

is not. Naturally we have a power play going on here as to who is

right and who is wrong?

5. Also a side bar question, at what point should I start to wean

from insulin? She takes 9 units of lantus in the evening.

Her sugar in the morning is around 90. During the day she very

seldom has to take any corrections at all. This has been the only

good thing so far from the surgery.

6. My last question is, do you feel that it is too soon after

surgery and that we are panicking early. I was just hoping for more

better days for her.

I am sorry to not be so glowing about the surgery right now, but

their are a lot of new issues that we are dealing with. I will be

taking her to Boston to see a pain specialist there. We will be

staying with Peg and Dirk Bates, 's parents. We are hoping

for a couple of good days, so that and can get to

know each other. They can at least understand what the other is

going through. This will be a blessing for them. Peg I know that

you will be reading this and we can't wait to arrive. Talk to

everyone later.

Love always, Annette

Steve & Annette Finocchiaro

sasnfinny@...