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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,
Liz.
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.
Liz.
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,
Liz.
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,
  Curls
Avatar universal
Thanks for posting back - hope if you talk to Dr. Rowe he can be of some help. Heather had sufficient medical insurance to go to Mayo,and I did suggest it, but she insisted that Dr. Rowe was the best gastro for her - I must admit he was an angel with her, saw her at 10 mins. notice, but perhaps he knew that her condition was terminal, long before she did. She did live much longer than most people with a malignant pancreatic tumour and I put this down to her exceptional will power.

I am there with you in feeling some medical problems are challenging - to say the least! If I thought I had problems with Crohn's, they were multiplied exponentially when I got breast cancer. The first arrogant, patronising Oncologist I saw after my 2 surgeries, whom I was only referred to by my breast surgeon because I had concurrent problems,and he was the brightest Oncologist for bc,  told me in no uncertain terms that I would die of septicaemia if I continued to take the methotrexate prescribed to keep my Crohn's in remission, along with the FEC chemo for bc. I then asked him what he would do if I had a flare of Crohn's during the 4 months FEC chemo, and he nonchalantly said: "we will deal with that when it happens." I then asked if he had dealt with a patient with concurrent bc and Crohn's and he flippantly replied: "No, but I have dealt with a bc patient who had psoriasis". Well.... I also have psoriasis, and we are not talking apples and apples here. As I was sturggling to decide whether to have chemo or not, I asked what he would do if I was his wife, and he unbelievably said: "Well, you're not my wife!".  AAArgh.....We then had an argument about my associated DCIS, which I had gleaned from my pathology report after the lumpectomy and total axillary removal. No-one had told me I had this alongside an invasive 2 cm invasive ductal tumour and I had to get onto a breast cancer forum to find out what it was. I was absolutely horrified by his attitude to me, because I asked questions I guess. He said DCIS is not cancer, but pre-cancer, as if there is such a thing. I told him I had studied Latin at school and I understood that ductal carcinoma in situ meant:"ductal cancer in place." Just means in simple terms the cancer has not spread out of the ducts.  He was furious with me, I ended up in tears, he stood up from the bed he was sitting on and said: "Do you want to continue this consultation?". No, I certainly did not, and to my husband's utter embarrassment, I walked out. I was incandescent with rage. How my lovely husband of 34 yrs has coped with my health problems I do not know. All I know is, he understands, is always there for me when I am ill, but doesn't really want to talk about the nitty gritties, being an only child he is not really comfortable in sharing emotions.

I almost didn't go through with chemo, even cancelled my first session, although intellectually, I knew I had to have it, since the cancer had already spread to my lymph nodes,and where else  I did not know,  as I could not bear having to see him before each chemo infusion, which is the protocol at my hospital.  I got in touch with my lovely gastro and he said he couldn't intervene as bc was life threatening and Crohn's isn't. Well, I beg to differ there, as I now have a stricture in the small intestine.  I then contacted every conceivable world class hospital I could think of by e-mail, in the UK and USA, including two cancer hospitals in the UK.  Every hospital replied and said they had not dealt with patients with my concurrent diseases, until I got a reply from a specialist IBD hospital in Harrow, England, a professor in IBD and he advised that if I had a flare, the only solution was steroids. Unfortunately I got steroid induced psychosis when dx with bc so this was not an option. That was a terrifying episode for me and my husband and I was nearly sectioned. I really don't know how I came through it when I look back, but I have always thought I have a weak body but a strong mind.

So, I reluctantly went for my first chemo treatment and when I checked in to the Oncology suite I asked the receptionist if I could see any Oncologist other than Dr. K. There was no fuss, no questions asked, which spoke volumes to me about Dr. K.   I was told to wait for 15 mins then I was taken into a private room and saw a lovely young 30ish female GP who only worked one morning a week in the Onc dept. I am not religious at all, but someone was looking out for me that day. She didn't even ask about my problems with Dr. K, just got on with trying to sort me out. She prescribed some nutritional fruit juice which the hospital sent direct to my home, and I lived on 3 cartons a day of these for 4 months. No fun for my husband, having to cook and eat his own meals at the dining table. She also prescribed a small daily dose of dexamethasone, a steroid  very different to the prednisone I had been on for some 30 years, used to quell nausea when having chemo, and this kind of held the Crohn's flare a little, although I had some instances of faecal incontinence in the street, so I stopped going out, except to the hospital for chemo. I lost some 28 lbs during those 4 months, which was alarming. Friends in the USA either sent or brought with them some size 8 clothes for me.

Guess what I am trying to say, with an intractable medical problem, if you persevere enough, one can eventually find a solution. I am completely tenacious about my health, knowing I have what my gastro calls "empirical problems" (had to look that up in a dictionary as I didn't understand the word - my bright husband said: "Liz, it just means there is no precedent for your medical problems and he is flying by the seat of his pants." God bless my husband, who is today 79 yrs old, got all his marbles, although disabled with a walking problem the docs here are saying they have never seen before. He is waiting for a neurology appt after having 2 MRI's on his spine (slight spinal canal stenosis), an angiogram which showed an old blocked artery which the cardiologist said has been taken over by other smaller arteries, and his peripheral vascular disease, after having a stent put in his leg, is not the problem. I do sometimes wonder what either of us have done to get these intractable health problems.

Sorry to have bored you with our health problems, I just wanted to say please go ahead and get other opinions, from Mayo or elsewhere and see if your father's problem can be solved. He should not have to live with bi-monthly ERCP's if there is an alternative.

Keep in touch - my email address is tedark at aol.com.

Kind regards,
Liz.
Avatar universal
I read your comment on the other post.  I am sorry I don't have anything to offer with regards to your dad.  I am not a medical person-just a well-read layperson (by necessity in my case).  It sounds like you have checked out (or plan to check out) some good hospitals in the Northeast (Columbia-Presbyterian, Tufts), and I would contact the Mayo in MN and the SF surgeon as well that Lizzie recommended.  Maybe at one of these teaching hospitals they will have a better idea or some new procedure that your local docs aren't aware of yet.  Sometimes that's the case, as hospitals associated with good medical schools are on the forefront of research and new techniques.  Maybe you could go the websites of other good teaching hospitals like Johns Hopkins, whatever hospital is associated with Harvard, Duke, Univ. of PA, Barnes Hospital (Washington Univ.) in St. Louis, etc., if you really want to do some research.  You could look under their gastroenterology depts. and see if you could possibly e-mail someone there and tell them what your father's situation is with the stents causing the pancreatitis and blockage.  Maybe one of the gastroenterologists/surgeons would even be willing to do a phone consult with your dad so he could see if any of these places have any new ideas and are even worth making a trip to.  Good luck to you.
Avatar universal
I read what you wrote above concerning all that you have been through with your Crohn's and now the breast cancer.  Good for you for standing up to the arrogant oncologist and fighting for yourself and trusting your instincts/knowledge.  I thought only doctors in America were that rude, but apparently it's universal.  When he said "Well, you're not my wife," you should have told him it was a good thing, too, and thank God for that!  I also have had more than my share of arrogant, nasty, curt and/or wholly dismissive doctors in the past 13 years and I know exactly what it does to one's soul and one's health.  Many (not all) doctors don't like to be questioned or challenged and get all huffy and defensive when a patient dares to ask a question or disagrees with their pronoucements.  I'm glad you have a supportive husband and that you had the strength to dump this guy and get yourself a new doctor.  When someone is sick they don't need to be putting up with this kind of insensitive BS on top of all else that they are dealing with.  
Avatar universal
Hi.  Thanks for the ideas.  I'm going to have to start doing some of the follow through research on the sites my dad's liked (and any others I can find).  My dad's been to several top of the field, leading edge people at this point, and there's just isn't a solution out there.  Fingers crossed that someone has some idea eventually, or his body starts to recover on it's own.  

You have certainly been through a lot to figure out what's going on with you.  The persistance and retaining your sanity is something to be proud of.  I'm always glad that I got CFS after some info was already uncovered and it had a case definition.  I still get plenty of nonsense responses from people, but at least my knowledge of it doesn't get confused by their lack of knowledge.  (I had a women the other day ask me "when did I start taking responsibility for my illness?".  I don't think she could make sense of my answer - "I called the doctor the next day."  I'll skip dredging up any of my unfun doctor stories.  It sounds like you could fill in every detail - and then some.  (I got surprisingly lucky early on.)  

I wanted to ask you if you know of any studies on the cinnamon?  Or were you just thinking of the generalized reports that summarize things?  Also, along with the quackwatch.com site, do you know of others - both pro and con - that you like to use?

Hope things are going okay for you as can be all considered.
Thanks for being in touch!
    
Avatar universal
I tried to find the study I read on cinnamon being as effective as some of the statin drugs, but couldn't find it.  I know I saved it, but I tend to save too much (unfortunately) and then I later can't find what I saved...  I've also read that cinnamon is effective in regulating blood sugar, especially in type 2 diabetes.  It can be toxic in very high doses (but most things probably can).  I also saw on CNN that cinnamon put on food (not in cap form) is not as effective due to the saliva interacting with it, so the capsules are supposed to be more effective.  I was going to start putting it on my food instead of buying the caps until I heard that.  In addition to cinnamon I take ginger caps and put turmeric on my food-am trying to find the caps for the turmeric.  Both are supposed to be good for inflammation.  

I am not sure what kind of sites/info you are looking for in particular, but I only went to the Quackwatch site for the first time a couple years ago when I was trying to get more info on my sister's cancer and the diet and belief system that were tied to it, as well as the hospital she visited in Tijuana that is connected to the author of the diet.  I haven't visited the site much other than for that.  As far as other sites, I don't frequent any with regularity except here on MedHelp.  When I research medical stuff including complementary medicine (herbs, foods that are shown or believed to be beneficial), I just save the article, but rarely re-visit the site.  If you are interested in finding out more about foods and herbs and the research that's been done on them, you might want to type in Andrew Weill, MD, or even get his book.  I haven't bought it because I just don't have the money right now to spend on anything that I don't absolutely need, but I think it would be nice to have all the info in one place to sit down and absorb.  I haven't formed an opinion on him 100%, but from what I have seen of him he seems to have a lot of knowledge about nutrition and what effect food/herbs have on the body, and know the actual research, and he doesn't seem to make any outlandish claims like a lot of the alternative people (like that quack Kevin Trudeau on TV, who has also been fined by the FCC or FTC for false claims according to Quackwatch), which I would be very wary of.  

Yes, I have been through a lot with regards to trying to get a dx and dealing with insensitive/arrogant  doctors who are unable to listen.  I've been sick for a long time, and I won't go into it all, either, but I can say that I haven't always kept my sanity and have given up many times because of what my experience repeatedly was with them.  After I was dxd with severe gastroparesis and then sent to Mayo and worked up for autonomic dysfunction, I finally got taken seriously by the neuros there, but strangely enough, after returning to my hometown I have been met with a new series of events--a new neuro practice refused to take me as a patient, a couple weeks later my PCP dumped me, and now my new PCP is questioning whether I really even have autonomic dysfunction (either he hasn't read my records from Mayo in full or is just being dismissive because he is an a** and is afraid of a lawsuit and/or is angry about the fact that I spoke up about the way I was discounted for years by his colleagues and their unethical behavior (my old PCP apparently talked to him about this).  So, the BS never seems to end.  I don't know if I will try to find a new PCP or not.  I'm afraid that it will be the same thing...they all talk to each other on the phone!  It's like the good ol' boys club, and they're the ones in control.    

I am glad you got the CFS diagnosis after more was known about it.  It sounds like you must have a doctor who takes your symptoms/complaints seriously.  Do you think that is an accurate diagnosis or do you think something different is going on?  I know I have encountered several people on the neuro boards who were told they have CFS/fibromyalgia and don't think it covers all their symptoms or that it fits (doesn't mean that's true of you, though).  I don't know that much about it, just know it is one of those diseases that is hard to diagnose and for which there aren't any definitive tests, which probably is the reason for the ignorant and/or insensitive comments and advice you encounter from others.  I do know what that is like.  Autoimmune diseases in general seem to promote that sort of thing.  If something isn't black and white (a test that says this is exactly and positively what you have--everyone gets to speculate about what it means, what is "real," what isn't, if your symptoms are from your diagnosis or something else (you're just "depressed," etc.).  You wouldn't believe all the people on these boards that I have encountered who have very real ongoing symptoms and even positive test results--highly positive ANAs, abnormal EMGs, etc., and yet their doctors can't or won't give them a diagnosis.  And unfortunately, it is mostly women who get autoimmune diseases, so that little fact adds to the discimination, ignorant comments from others---not least of all from doctors.  Sorry for the long post...
Avatar universal
Hi Annie, I'm sorry to take so long to answer.  I didn't see the post.  The cinamon info is interesting.  I would never had thought of capsules as better.  I've found lately that my habit of saving things, isn't resulting in my finding things!  My mom's blood pressure tends to be very high, so a substitute might be good.  And I like cinnamon!

I agree Weill seems to know what he's talking about.  Trudeau was so outlandish that it never dawned on me to take him seriously.  I was so surprised that his book was selling!  Hopefully it's just a few dollars each person wasted.

It's common in CFS and FM, so I was wondering about your autonomic dysfunction and what it's about.  I have neurally mediated hypotension, the other frequent one being POTs.  Both are called orthostatic intolerance (of standing), and there is a wide range of autonomic dysfunction beyond the CFS ones.  I don't know what to say about the PCPs.  I've heard stories like that before, but maybe some straight talk would help, or very docile initial behavior to lull them into feeling "safe"?  Automanic dysfunction is a poorly understand and disrespected thing my most PCPs so it might be that simple.  (Always amazes me that Hopkins can find something, and others can dismiss it and me like I made it up, even in other departments in Hopkins.)

I do have a "classic" sounding case of CFS, and my symptoms all fit precisely with nothing extra.  It was sudden onset post-virally which also makes it easy to spot.  I do try to keep an eye out to see if I missed a rule out diagnosis.  They may be honing in on a diagnosis test, which would help so much even for research so the group could be fixed and results compared.  As you said, there was so much to deal with with an autoimmune type illness and doctor's poor responses, lots of stories.  Even when they cared it was amazing to me what some of them didn't know.  I got past the depression diagnosis early on by getting checked at a major hospital's "cocommitent medical and physical illness" clinic (for heart patients with depression, etc..).  They doubled the interview time and kept bringing down new people to interview me, but ultimately they determined that I had a physical illness with "no neuro vegatative symptoms to focus on" and told me to go back to my physician.  Bringing that up helped in a lot of doctor's appointments.  I'd actually gone to them because some idiot doc was insisting I was depressed.  I'd say I wasn't and he'd reiterate (while giving me info on his last patient as abused, hence the real sense of idiot).  He said in 40% of cases like mine that's what he finds it is - and then I called his bluff and said, so what do I need to take?  He told me not to take psycotropic drugs because they are powerful on the brain.  However, he'd mentioned the clinic along the way, and I thought, if there's a 40% chance of treatment, I'll take it, and was hopeful when I went, even though I knew it was that I *couldn't* do stuff, not that I'd lost my will to.  It's funny, as my symptoms have improved, my thinkings improved, and I can look back and see how ridiculous some of those doctor's were and the whole "depression" thing.  I've seen depression close up.  It's serious and it's not CFS or an autoimmune disease.

There's something not right in our whole medical system that new proven information isn't used, such as with ulcers and there still being doctors that use only low stress instead of antibiotics.  Enough of my gripping for the moment :).

I don't know anything about the gastro diagnosis you have.  What it is?  Hope you are feeling well.
Avatar universal
hey curls im not sure where you live at but i had a lenghtly discussion with my primary doc today to discuss my options for finding a new gasto.  Indiana University Hospital in Indianapolis In.  has some of the Best gastro's in the united states. The deal primarily with the pancreas.  My doc told me today that they can put in stents that go from your liver all the way into your pancreatic duct. he said they dont like to do it on all patients but if your in a chronic situation that maybe something they can consider. here's my email i have their information would be glad to send it to you: ***@****  Hope this helps it's a long road and i wish your dad all the best.
Avatar universal
Hi Melinda,
Thanks for lettting me know!  That's very exciting.  You're email address didn't come out.  Can you post it as part 1 at part 2 (then it works)?  I'd very love to get the info from you.

Your description of the symptoms also helps.  My dad's also seeing diabetic changes, blood sugar, from this.  If the others start it will be helpful to know to tell him it might be related.

You've been through so much.  I wish you very success at getting this completely resolved.  If the next step is disablity and you have questions, and want to ask, I have some experience with it and will try to answer.  Just feel better, I hope!
Cheri
Avatar universal
How about i just do it this was:   Indiana university hospital ercp clinic: 317-274-4789 you cal also look them up thru yahoo search type in indiana university hospital and about half way thru the page you'll see ercp.  kinda gives you some info.  I appreciate the infor on disability, i hope i can keep working because my insurance is thru my work. if you could post me some more of your dad's symptoms ill compare them to mine and see if i can help you anymore.  I notice that my sugar "bottoms out" goes low very quickly and that makes you feel real bad if he starts to experience that have him carry some glucose tablets, those are amazing and they work quickly.
I notice that i feel pretty good today :) having a good day in with all the bad helps encouraging more than anything.  I got a appt with another specialist today, im hoping that makes all the difference.
Well good luck hope all the info helps!  I wish your dad the very best.
Melinda
Avatar universal
Thanks so much for the info.  I'm glad you had a good day.  Did you get any more news at the specialist?  Was he helpful for you?  My Dad's seems okay between stent replacements.  However, his blood tests are showing diabetes beginning stages.  With each attack they schedule a stent replacement after the blood test shows the elevation of an attack.  It's been every three months.  Apparently the fluid goops up and gets stuck at the stricture. Then it pushes through and he's okay for the couple days until the ercp.  The glucose pill trick might be very invaluable for him - thanks for that.  I'm sorry you have to have enough experiences to know about it.  

I sent another private message to you.  Only this time I remembered to include my email.  Maybe we'll have something to help each other :).  I hope!!!
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