My Consult at Lahey Clinic Today

[Guest guest]

I just got back and wanted to look at what an EUS entails and get

some feedback from you guys...that's the next procedure he has

scheduled. We talked for quite awhile...he seemed likeable and

such. He said that he " believes " that I have CP (wow!! like that's

new to me right?!?) and we talked about various procedures available

to me, etc. He didn't seem too thrilled about the ERCP stuff, but

then said he wouldn't rule out that I may need that as well as this

EUS. It's scheduled for August 3rd at 1pm EST.

Thinks the percocets are probably not enough for pain for me....and

wants me to start going to a pain management clinic they have right

there at Lahey Clinic. It's almost a 2 hr drive from where we live,

so I asked if we couldn't find one a bit closer to me, but he said

he wants " this " managed as a team approach so said he wants me to go

up there for that as well. Talked about SOD and I found it

surprising that he doesn't seem to think that REALLY actually exists

(?!?!?) - he said it's just an " easy category " to throw something

into when they can't figure out what else it is. I thought that was

kind of an odd thing....I mean he didn't outright dismiss it but

sort of gave the impression that they only find it very seldomly.

He thinks perhaps I have something " microscopically wrong " and that

the tests haven't picked it up so far because of that.

Wants to increase my Creon, but then I didn't leave with any

prescriptions either. Got blood work done - the usual CBC, liver

function, amylase/lipase. I explained to him that my amylase/lipase

have only elevated once and then never again and thankfully he was

aware that with cp that can certainly be the case. When my husband

asked him about post-ERCP pancreatitis he also said something I

thought was odd and that was that with people with CP it doesn't

happen in his experience - only in AP, huh?? I thought that was odd

as well. He examined my abdomen and seemed surprised that I was so

thorough in providing him with my medical history summary and

my " drawings " that were sent to me so that I could manipulate them

with arrows, lines, etc., showing exactly where in the anatomy I was

getting my pain. I also included alot of words saying that I'm

basically through with the " wait and see " approach and wanted

aggressive treatment. Didn't seem like the hypoglycemia was a big

deal to him...he said if the panc was causing it (and of course I

did a google search and came up with TONS of stuff on pancreatitis

and hypoglycemia) it would be because there was an extremely large

tumor was present and that obviously would have been seen by now.

What bothered me was that when asked about stenting, etc., he said

he doesn't do that because it basically doesn't work, same for

celiac blocks. Although he did mention something about cutting the

splenic (?) nerves and that has been helpful in reducing or

eliminating pain. Anybody heard of that? When asked what I could

expect long term, his answer was basically that if they couldn't

find anything to surgically remove or ducts to cut, etc., that I

would be facing a chronic pain situation until my pancreas burns

itself out. Pretty bleak...Anyway, that's about it. If I think of

anything additionally I'll post later.

love