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Avatar universal

stricture in pancreas duct from ercp that can't be fixed - please help!!

My 72 year old dad is having repeat pancreatisis attacks because of stricture in the pan. duct caused by a stent put into during an ercp to remove a non-cancerous  adenoma of the ampulla.

With each attack they remove and replace the stent which apparently is clogging up and then causing the attack.  He's been through some 13 of these procedures in the last 2 years. The enlarging with stents hasn't worked yet.

He's been told by top doctor's that he's not a good candidate for the surgery, get this, because his attacks haven't been bad enough so the duct hasn't stretched out enough from the backups, so it's not big enough yet and therefore is correlated with a poor risk of surgical success.  (They use the stretched duct to rebuild the new one.)

So, we are at a dead end of options and ideas.  For now he's getting the replacements every two months to avoid the attacks, but he can't do this 6-x a year for however long he lives.  In a year if there's no improvement he'll have to do the surgery even though it's a bad option, high risk even when a good option.

So, does anyone know any excellent experts in this field, either surgeons, ercp, or pancreas/gastro?  Where are they located?  He's talked with Beth Israel, Columbia Presbetarian, and Dobbs Ferry.  And is working on Tuffs, Albany.  He's run out of enthusiasm to go and get the same answers.

And does anyone have any ideas?  Any experience with the surgery for the pancreas duct?

Any help would be sooooo appreciated.
16 Responses
Avatar universal
HI there - sorry to hear about your Dad. These attacks must be so debilitating. I am sorry that I know little about pancreatitis as I have Crohn's.

However, I did meet through the Crohn's and Colitis Foundation of America website, a young woman in San  Francisco 4 years ago and we corresponded privately, at least weekly. She had been recently diagnosed then with Crohn's but unfortunately went on to get a malignant pancreatic tumour and sadly died this past Feb at 39 yrs old. At the same time as her pancreatic tumour was diagnosed, I was dx with breast cancer, so we had a lot in common. Apparently her pancreatic tumour was a secondary, and the primary tumour was never found.  This is not uncommon in my experience, as my late twin brother died at 50 yrs of an inoperable secondary brain tumour, and his primary was never found, although he was treated at one of the major university teaching hospitals in London, England.

Through my internet correspondence with her (I live in England) I learned a little about pancreatitis (she had many ERCP procedures). She was treated by a Dr. Rowe, a gastroenterologist, at the University of California San Fransisco (UCSF), but I don't know which location. You may be able to google Dr. Rowe (sorry I don't know his forename) and see if you can find some information on him. My friend was highly intelligent and articulate, had good medical insurance, and was convinced he would cure her, but I guess not all cancers can be put into remission, although thankfully, mine is at the moment.

The other option I would respectfully suggest is a consultation with Mayo Clinic in either Minnesota or Jacksonville. If I had an intractable problem, as your father does, this would certainly be worth considering You could call them, and see if they have a specialist(s) in this field, which I would think they do, as they are a renowned world class medical facility. MD Anderson in Houston is also a top hospital, as is the Cleveland Clinic in Ohio.

I do hope you get some constructive advice soon and your father's problem can be alleviated.

Take care,
Avatar universal
Liz, Thanks!  That does get my brain rolling.  My dad had contacted a specialist center in a California hospital last year so I'll find out who it was.  He sent his records and got a reply, but things have changed since then (or more accurately haven't), so it would be good to contact them again.  I live near some major hosptials so I'm trying to talk him into that, but a review at mayo is something I hadn't thought about.  Maybe if I call some of these places I can get an idea of which are the most advanced with this at this time, even if it's not their hospital.  

I'm sorry about the loss of your friend.  She sounds special.  Pancreatic cancer is very difficult, so if she got more than a few months, then it went above the norm.  Thanks for your help.
Avatar universal
Hi - glad to be of help. Would you like me to contact one of Heather's close friends to find out where her gastro, Dr. Rowe practices at UCSF? I am sure they will know.

Yes, Heather was very special. She was planning to come to England to see me for a week this summer but sadly this was not to be.Her husband, who works for Cisco Systems, set up a memorial tribute site in her memory and I am amazed at the number of tributes to her caring and intelligent personality.

Hope all goes well with your Dad.
Avatar universal
Hi Liz,

Thanks for the offer.  That would be nice, if they do happen to know.  My dad is not wanting to see anyone else and thinks he's got the best info he's going to get.  He did go to a top notch guy who was through and thoughtful.  I think I need to wait a few months until he absorbs this and then suggest again.  I'm still of the mind that synergy can happen between diff doctor's ideas, so I'll push for it gently, and he's listening to my ideas.  It's not like we have a good option open to us.  My folks generally have good instincts, so I have to trust that too.

That would have been great if Heather could have visited.  Still at least you had a chance to know her and her to know you.  These things are so hard.

Take care.
Avatar universal
Hi Curls - heard this morning from one of Heather's close friends in SF. Heather's favourite gastro (and the only one Heather respected) was Dr. Anderson Rowe. His tel. is 925 901 1303. He practices in San Ramon, CA. I think he is in his early forties, so should be up to date on current practices and meds. Perhaps you could give him a call on behalf of your Dad, explain the situation and see if he can help.

I searched the length and breadth of England when my previous gastro emigrated to New Zealand, and with my GP's help, found a wonderful young gastro who is passionate about IBD. It has made all the difference to my mental well being, as well as physically, to have a gastro who is up to date with Crohn's treatments (he even takes the time twice a year to come to the local Crohn's & Colitis meeting in the evening at the hospital where we are all treated) to bring us up to date on new research, meds. etc. and will answer any questions from the audience, so we all learn.

Good luck,
Avatar universal
Thanks so much!!  I'll be in touch with him.  This dealing with medical stuff is so challenging.

Glad you got the help you needed.  A quality doc makes all the difference.  

Talk to you soon,
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