Long: My Thoroughly Confusing Dr. App't./Also A Belated Thanks to Ellen Grove

[Guest guest]

Well hello to all. This is a long read so just a warning I s'pose -

don't read it if you don't want to be thoroughly confused although

I'm sure some of you have had the same " stranger than fiction "

doctor appointments at some point or another.

Also, I wanted to (belatedly) thank Ellen Grove for her message to

me back in April regarding the " illustrious " Dr. Banks at

Brigham and Women's Hospital in Boston, MA. It seems that you had a

similar experience to what I had when I went to see him last month.

It was basically a huge waste of time really. He never even

examined me, ordered any testing or anything else. But, he decided I

guess that he could diagnose me based on what my medical records

show. Which, of course, is nothing because I haven't even had any

tests since about this time last year unless you include the dual

sphinterotomy that Dr. Lehman performed in August of 2004. Her

apparently felt that there was enough of a high pressure in both the

common bile duct and the pancreatic duct to perform a

sphincterotomy. Sadly, that never helped me at all and truth be

told it actually left me in probably about a 10 times more painful

state than prior. Anyway, to get to the " stranger than fiction "

appointment that I went to today!!

Today I go to the gastro doc in Fall River, MA about ten mins. from

my house. This is the one that referred me to the " glorious " Dr.

Banks in Boston, MA. Of course, this one in Fall River that I

saw today (Dr. Sutherland) just absolutely reveres Dr. Banks. When

I went to see Dr. Banks last month he never performed any tests, nor

did he even examine me when I went to see him, he never so much

as " palpated " my abdomen!!! BUT....he makes the " proclamation " that

I don't have chronic pancreatitis, that he doesn't know why I have

pain, yadda, yadda, yadda. Problem: He is an internationally known

doctor, affiliated with HARVARD (!!)......still, I don't see how he

can diagnose me w/o so much as running any tests.

Although he did order up a gastric emptying test which as is the

case with about every test I have (in my humble opinion because

every test I have has had nothing whatsoever to do with the

pancreas...so it seems to me that the old saying of " if it walks

like a duck, quacks like a duck, etc., then it probably IS a duck "

is most befitting here) but for some strange reason every doctor I

see doesn't want to run any pancreatic tests per se. They even had

me do a 24 hr urine test looking for Porphyria (which is an

inherited disorder and no one in my family has ever had it.) That

test, of course, was a negative study as well.

So, I go see Dr. Sutherland today....he flips thru my records and

says he is in complete agreement with Dr. Banks that I " probably "

(his words) don't have chronic pancreatitis, however, in the VERY

same conversation (I really thought I was on LSD or something....I

mean it was absolutely mind boggling today!!)...VERY SAME

conversation he says to me " But you might want to find a pancreatic

surgeon, they might decide that they need to operate on your

pancreas...you could have what is known as small duct disease. "

HUH??????? You just told me that I don't have anything wrong with

my pancreas and now you are telling me to go see a pancreatic

surgeon??? So, this time I spoke up!! I said " You just said you

don't think I have anything wrong with my pancreas...why are you

telling me to go find a pancreatic surgeon? " " Well, it's possible

that you have something going on in another duct...I mean, Dr.

Lehman performed the dual sphincterotomy so that should have taken

care of whatever was wrong in the common bile duct and the

pancreatic duct. " I THEN SAY (!!) " Well, can't scar tissue build up

sometimes and cause the ducts to get clogged again? " ... " Well, yes,

it can happen, but I don't believe that that has happened in your

case. " He then says " Unfortunately, you're just going to have to

live with this I guess.... " " All we can do for you is to treat your

pain....it could be irritable bowel. " (Which of course is what

every DINK (to refresh your memories...Doctors In Need of Knowledge,

i.e., DINK!!) says when they don't have any explanation for gastro

problems!! I said " Well, don't you think that if it's irritable

bowel that it is VERY atypical? " " Yes, (he says) it IS VERY

atypical for irritable bowel syndrome, I must say. " HUH?????

I THEN SAID " I am in varying degrees of severe pain and nausea EVERY

SINGLE DAY - what am I supposed to do now? " He again

repeats, " You're unfortunately just going to have to live with it I

guess.. " He puts his head down and now won't look me in the eye for

the rest of the appointment. As a matter of fact, when the

appointment was done I had to stand in line in the hallway because

apparently there was only one woman working the check-out desk and

Dr. Sutherland passed by me TWICE (!!) in the hallway and he

wouldn't even look at me!! Went by me and looked down at the

floor...he spoke to the man in front of me in line but when I tried

to catch his eye he actually looked down at the floor. I asked for

an MRCP and he said he wouldn't schedule one because he didn't

believe that it was necessary. I haven't had one since last year at

this time so I thought it a reasonable request and a sound one

medically speaking don't you think? I mean if you're talking about

this small duct disease doesn't it make sense then to run an MRCP to

try and focus on that particular duct? But what do I know right?

So...that is what I was left with.

Now tomorrow I'm to see the pain management doctor. This is the

place that actually has it printed on the envelope that you get with

your prescriptions that " missing appointments may have a direct

bearing on whether or not you will be able to get your pain

medication prescriptions. " So, God forbid I should be very ill

tomorrow morning. I'll have to crawl into that place if that's the

case. But because I have been complaining that the pain is

worsening...(my original appointment with the pain doctor wasn't

until July 19th) so it has now been moved up to tomorrow to discuss

whether or not I'm to have another celiac block which left me in a

bad state for 3 weeks last time I had one!! So, I'm a bit leery of

having another one at this point. The first one I had seemed to

help in that it kept me out of the ER but I think that's also

because I avoid going there like the plague now only because I know

that if I go it will be a 3 hour wait while I sit in a room waiting

for the injection. In pain and sometimes with the most overwhelming

nausea - unfortunately for me however, I can never actually vomit to

get relief. Although I must say that that particular symptom

doesn't seem to get to that point lately. I mean I get very

nauseated at times but thankfully for awhile now I haven't gotten it

to that point. I'll take the pain any day over that awful

combination of overwhelming nausea and pain.

So at the moment I'm now completely exhausted, feeling like I have

absolutely NOWHERE to turn...this is just getting to be unreal,

truly!! Thanks for reading this far and I'm sure this has

thoroughly confused you as well.

Love to all

The As Always, Thoroughly Confused,

P.S. To Laurie: I read your message and thank you for it. At

least I know I'm not the only in pain every single day. Your

reasoning was very sound and I appreciate that. And yes, our mutual

friend who will go to any length to see a million doctors if that's

what it takes is also always in my thoughts and prayers. She is

actually quite inspiring to me because I guess that is what I now

need to do..keep on fighting, as is her motto. I've missed you too

Laurie, you have always given me very thoughtful advice and I want

you to know that I'm always very appreciative of that.

P.P.S. To the group at large (as it were!): We are fortunate to

have Laurie as a group member. She is really quite knowledgable and

she always offers up very sound advice.

Well, it just seems to be like the old X-Files show... " the truth is

out there somewhere " That line is now getting to be MY motto!!

Life is what happens to you while you're busy making other plans.

Lennon (1940 - 1980), " Beautiful Boy "

[Guest guest]

Hi ,

Don't know if you remember me, and I may have you confused with some

one else. Are you the one who has a son in Gastonia NC ? I live in

York SC (about 30 minutes from Gast.

Alot of your story sounds like mine. Do you have diabetes? Well I

have CP with SOD but I also have Gastroparesis and the symptons are

very similar. I think you mentioned a gastric emptying study? That is

how my Gastroparesis was diagnosed. Diabetes is the usual cause. But

other things can trigger it.

I am blessed with a GI Dr, that I really trusted and love. Of course

I was lucky b/c when I needed one I was working as a receptoinist in

a pain care center and ask the Medical Director for a referral.

Also I am seen at the DDC at MUSC that Chrissy raves about. I love

those guys too !! Maybe you should consider those guys if your son

does live in Gastonia. MUSC is about 4 hours from here and might be

worth the ride.

In case I you confused with some one else, I will end here and wait

to hear from you.

Either way, I hope that you are feeling ok. Keep the chin up !!

Love, Cyndi

[Guest guest]

,

I have seen 9 GI's before finding the " ONE " who believes in me, so

it is necessary to keep going until one finds a doctor who knows how

to help a person with CP, or if they don't then are not afraid to

find out.

You have found one that believed something was wrong, being Dr

Lehman...I seem to remember that you had called him back after your

procedure to ask about another doctor in your area, and he hadn't

returned your call. Did you ever call him back? to see if he could

recommend someone else, or to tell him about the Dr's attitude that

he referred you to? Its things like this that need to be reported to

a doctor who is the referree so they may know to strike that

particular doctor off their referral list so to speak.

I'd still be getting in contact with Dr Lehman if you haven't

already done so, and would be asking his advice for another doctor,

or going back to see Dr Lehman again. My Sphincterotomy with him

didn't work the first time, but then I was warned by him and another

doctor, as well as stories from this board that it wouldn't

necessarily work the first time. Could take multiple stentings to

make some difference, which it did...I had 7 stents after Dr

Lehman's procedure before it started to stay fixed.

So I would be trying for Mayo where Heidi suggested, or else call dr

Lehman. Sometimes we just need to be forceful in our contacting of

doctors..or actually persistant is a better word. Sitting back and

waiting doesn't cut it for me. Doesn't get me anywhere and doesn't

send out a signal to the docs that I am seriously hurting in my

opinion.

Regards,

Ward

PAI Administration Support

dceward@...

[Guest guest]

go to MUSC (where I believe Chrissy worked and was also treated???)

Hi , I am so sorry that youhave been having such a difficult

time with the docs. It seems they all have there own protocol as to

what test to do and when in order to receive a dignosis. It can be

very frustrating. You are correct saying that I worked at MUSC and

was also treated there. The surgeon there is the one who referred me

to Cincy for the tp-ict and I have been doing wonderfully since.

Except for a few minor setbacks and my lousy luck, I would be back to

my obnoxiously perky self. Its been almost 7 months since I had the

total and have had absolutely no panc related problems. I feel as

though I am completely cured of this dreadful condition. Now if I

can just get the rest of my body to agree everything would be honkey

dorey.

I guess I am in the vast minority as far as doctors go as I have

gotten nothing but complete support and understand from the

physicians at the DDC at MUSC. Never once did they hesitate to find

out what the problems were and tried ever procedure to treat me and

did so in a very timely manner. I was dignosed in August of 03 and

had many procedures and sugeries over the next 18months culminating

with the total in Nov of 04. I was never treated as a drug seeker

nor was I assumed to me an alcohlic. Maybe it was because I worked

with those docs for many years as an RN and they knew me before I got

sick, I dont know. I would strongly recommend the DDC to anybody who

can get down here. I was so pleased with the quality of care that I

received that I when I am well I want desperately to work in the DDC.

It was not an easy time by any means, the treatments and surgeries

were a nightmare, toturous really, and I would never ever want to

endure that again and would not wish it on my worse enemy. I hated

having to go through all the steps and procedures but I guess you

cant walk until you have learned to crawl. I would do it all over

again tho (well except for the current events) to achieve the

wellness that I have. I am extremely grateful to those docs and feel

that they have saved my life, on more then one occassion. Charlotte

is only about 3.5 hours from ton and it is a relatively easy

drive.

I have also heard good things about Duke in NC and Emory in GA (which

now is doing the tp-ict as well, I think). Dr, Cotton is the

director of the DDC at MUSC and he is probably one of the best

pancreatologist in the world, really. He is the inventor of the ERCP

procedure and although is is now in his early 60's he travels all

over the world teaching. Students apply from all over the world as

well to learn from him personally. Before I decided on having the

total as asked for his opinion. Even thho he was not my physician,

he looked over my films, chart and history and made his

recommendation.

I do hope you feel better soon, this disease is so difficult to live

with and there are so few physicians trained in how to appropriately

care for a cp patient. I do feel that I am in the vast minority as

Anyse put it and feel very fortunate indeed. I hope and pray that

you, and everybody on this board can feel this way as well.

Warmly,