My visit with Dr. Hawes and Dr.

[Guest guest]

Well guys I had to share my MUSC experience. I went in today at around 9:30.

I met Dr. Hawes assisstant or resident I am not sure what he was. He talked to

me a while and then Dr. Hawes came in. He had looked at my MRCP films and CT

scans and said I had a pancreatic divisum. He is the first doc to tell me

this. After 2 years of frustration I finally have an answer. I was so thrilled I

wanted to hug his neck. I actually cried. What a great feeling to not have a

doc shake his head and tell you we don't have a clue as to why you have

pancreatitis.

Anyway, the asked me to be in the Naps genetic study they are doing out of

Pittsburgh. I told them that was fine and did my blood work etc. Then he

ordered blood work also and called to see if Dr. Adam's could see me today. He

was

having clinic today and happened to be in. Since I cannot have any ERCP

procedures done due to my gastric bypass my only option is surgery.

I am scheduled for sphincteroplasty (Sp.) on June 9th. He wanted to do it on

April 25th but I didn't want to miss any more days of work and it would be a

bad time for my family. So I said I have lived with it this long, I can hang

on a while longer.

He also wanted me to have an Octreotide injection but my insurance needed

some more info. So I am going to get all of that to them and hopefully they will

pay for it and I can have it done locally. He said it is quite expensive

without insurance.

I mentioned this group and the wonderful people I have met on here and they

said they were glad I had found you guys and what a great group it was.

So any of you that have had this procedure done can you let me know about

your experiences? Did it help?

Thanks so much,

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

I experienced that crying when one finds a doctor that sees what no

other's have seen or believes in you at the very least. I am so glad

you have a definite diagnosis.

I hope your upcoming surgery can give you the relief you deserve. And

I hope the ocreotide will be approved and help in the meantime.

Remember to ask your Dr to talk with the insurance if they don't

approve it. Doctors, when they explain things can sometimes perform

miracles with insurance companies.

Looks like things are on their way up for you..

Regards,

[Guest guest]

Angie; I am so glad that you had such a postive experience with the

docs. They are the 2 who had taken such great care of me for so

very long. I would not be doing as well as I am without . He

did a sphincteroplasty on me in october of 03. June 9th is a good

day, my daughter's 10th birthday but I will try to come down and see

you in the hospital. If you have any questions about the

sphincteroplasty, please feel free to ask. It was very successful

but unfortunetly for me it was a little too late. I feel certain it

wont be for you. He is an excellent surgeon and a really nice guy.

I had octreotide injections for a very long time and it really

helped to relax my panc a lot. I got a little pissy about it at one

point and decided I didn't want it any more, well within 6 weeks I

was begging for more. It cost about $1300 per injection, give or

take a little, so preapproval from the insurance com is mandatory.

Dr. is th eone who helped me get this group linked to the DDC

web page. I am very pleased that he didn't look at you like you

were nuts when you mention us..LOL. He already thinks I am nuts

*s*. I wish I could get a job working with that group taking care

of panc patients. Actually I just need to get a job; being couped

up like this is making me crazy.

Again I am so glad your appts were so productive. I know exactly

how you are feeling to finally get the answers to the questions you

have had for so long. Dont worry about crying, it happens to the

best of us. Let m e know if there is anything I can do to help

you.

Warmly,

[Guest guest]

,

I am so relieved to finally get answers. Today has been a not so good day as

far as pain goes but at least they finally gave me something stronger than

Darvocet to deal with it! Dr. Hawes wrote me a prescription for Oxycodone and

told me to go and have it filled downstairs at the pharmacy before I left.

I see light at the end of the tunnel!! Someone is finally going to try and

help me! I am going to keep pursuing the Ocreotide. I Do hope they will approve

it.

Thanks so much!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

,

They were wonderful! I wanted to be like one of those crazy people who walk

around with my arms wrapped around their legs and not letting go with them

walking around with me dragging me behind them going " thank you, thank you,

thank

you!!! "

They both were pleased that I had already found this website. I am glad to

hear the injections helped you. I am hoping to be able to start them and see if

they will help. Where do they give them to you? In the arm or the rear?

How did they do your surgery? Through ERCP or by incision? I am really hoping

it is not too late for me. It has been 2 years almost since I was diagnosed

and I know I had it before then and they feel like I did also. But, Dr.

assured me that he would keep trying.

I love them, I love them, I love them!!!

I would love to get to meet you. Maybe I can meet you before I have surgery

so I won't be so sick when you get to meet me. If I have to go up before hand

for anything I will holler!

Thanks sug and have a great day!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

,

That is exactly how I felt, like the Toys R Us commercial! LOL! In regards

to your question about the Insulinoma. They feel like I do not have one. They

don't think this will help the diabetes either. They feel like it will continue

to worsen. I don't think there is any turning back now from that. I feel like

the damage is already done.

I had my experience with the NG tube from my gastric bypass. I had it down

for 3 days! It was yucky but it did not hurt coming out like I thought it would

they just told me to hold me breath and relax and it came right out.

Did you have incisional drainage tubes after your surgery? Who do you

reccommend for Anasthesia? I went for my pre-op stuff yesterday also the did it

all

while I was there and but I didn't meet the anasthesiologist. I just talked

to one of the nurses and docs that works in there. They filled out all my

paperwork, did my bloodwork etc.

I am going to keep pursuing the shot. I really would like to try it and see

if it will work. Dr. Adam's already told me he is not sure if the surgery will

help but we have to try something and this is the first step. I told him

let's go for it. At least we are moving in the right direction!!!

I would love to meet you. I will see how my schedule is and maybe we can get

together.

Take care, and thanks for all the info! You are so great!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

,

I can imagine that after working with them and being a patient you see all

sides of the docs. I will see if I can request one that you mentioned. I am not

sure if my insurance has certain docs on the plan or if they cover the

anasthesia in general. I will have to check it out.

I have had symptoms for years also and didn't know what it was. Of course

now I know differently once I realize what the pain was. Dr. Hawes said that of

course this is a birth defect so I have probably been dealing with it for

quite some time. They are not sure of the extent of the damage until they get in

there. Dr. Adam's said I was only approved for the sphincteroplasty so he would

not do anything else this time. He would have to try this and then see what

else needed to be done if anything.

I am so glad to be in their very capable hands! How long has it been since

your TP/ICT? Do I remember reading 4 months or was that someone else? How is

eating going after that? Hope you are having a wonderful day!

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

If your insurance company approved you for the surgery at MUSC then

you can have your pick of the anes docs. Semd me a private email

and I will send you the number to call. I wouldn't want to post it

where all eyes can see as it is not a published number. Actually I

had thought of asking Alpert to write me a letter of reccomendation;

but I am kind of afraid to do so as it seems like asking for alot.

Hawes had said that my condition was a birth defect as well. I had

ductal tortuosity. the ducts dont seperate as with divisum but

twists and turn; mine kind of looked like an 'omega " and that is

what I called it. I am always giving pen names to things; makes

them a little less of a threat. You should hear some of the ones I

had for ...LOL. Even some of my co-workers referred to him as

such; it was all in fun, nothing malicious at all and I had told him

too.

I had the tp-auto ict on November 16th, so its been alittle over 4

months. I eat whatever I want but some things still do bother me.

I had a bad night last night. I had taken my son shopping and we

walked and walked, it was nice, we had lunch, fresh seafood. I dont

htink it was the food but the walking. Which is even scarrier to

me. I eneded up taking 2 vicodans and 6mgs of dilaudid (which I

have not taken in a long time).

I had forgotten I needed bendedryl when I take that much dilaudid

and was up all night itching. It was awful. Being a nurse I know

all the things that can go wrong and I kind of stress myself out,

but I really think it was more the activity. I need to get back on

the treadmill and log more miles to build up my stamina. I was

given a really sporty used treadmill and havnt really used it that

much.

One thing that I have noticed since haveing the total is my

posture. I was raised very strictly in the manner of a

tonian lady with years of etiquitte classes walking with

books and even so much as crystal bowls on my head. So needless to

say I had great posture. Well rolling my back helped the pain and I

have noticed that it is more difficult to stand up straight. 30

years of posture gone in 2! I was also an excellent cook of Chas

cousine but that is coming back a lot easier then the straight

back. But I will never place one of my g-grandmother's cut crystal

bowls on my head again; or anybody elses for that matter...LOL

Have they given you a time for your surgery yet? I know they wont

call you until the night before but did give you an idea. I

know his secretary does the posting of his cases so you can ask her

to be a later case. He used to do his easier cases first, lab

choles and such and the longer cases later, the sphincteroplasty

will probably be a 2nd or 3 case in the day. He may have changed

his patterns, I dont know as I have not worked there since last

summer and that was even brief. I used to prep most of his cases as

with the other GI surgeons. I had certain areas in which I sort of

specialized; GI, ENT, Gyno/onc, Nuero and Uro. I really miss that

job. I have actually prayed to get it back but I think God has

other plans for me, wish he would hurry up and let me know tho, I am

getting quite discouraged. I wouldlove to wrk with panc patients

really. I just would not be able, nor would I want to, tell them of

my personal history, but I could certainly relate.

Did I answer your question?? I guess I am rambling a bit. Take

care and talk soon