RE: /TP/ICT and a lot of questions.

[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@...

[Guest guest]

In a message dated 8/29/2004 2:53:51 PM Eastern Daylight Time,

SASNFINNY@... writes:

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.

Hi Annette: I don't have any pain from my pancreas or pancreas area. Maybe

is having pain since she had a previous surgery to her pancreas which

made a pathway to the brain or maybe she has scar tissue from the previous

surgery.

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.

I don't have my spleen. Dr. Sutherland removed my spleen when he removed my

pancreas. Sue Rebello didn't have her spleen removed when she had her

pancreas removed and had to return to MN to have her spleen removed due to

problems with her spleen.

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

No spleen no 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?

Annette, I have never had any types of blocks.

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.

I would talk to her doctor about bs and insulin. You wouldn't want her bs

to rise in the night.

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 don't think it is too soon after surgery. I believe that there is

definitely something wrong. It could be the nerves from the pancreas to the

brain.

Scar tissue from the previous surgery, spleen, or Gastroparisis.

Dear Annette, I am so sorry that is experiencing such pain. I was

hoping she would be rid of the nightmare she was going through. Please let me

know if you get any answers when you return from Boston. Please give Peg a

big bear hug for me. Love, Shirley

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@...