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Mayo Clinic - Jacksonville

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JoBlack1
JoBlack1

I'm considering going to Mayo Clinic for a second opinion.  I have chronic pancreatitis, am on two opiod meds for pain, have a resected pancreas with cysts around the pancreas, liver and kidneys.  I am told I have three options:  pain management, test staying on a feeding tube to give the pancreas a rest or consider removal of the pancreas and deal with the repurcussions after the fact.  

If anyone has gone to Mayo and has a doctor they were pleased with - please share the doctor's name.  I am looking to go to Jacksonville's Mayo location.

JB

1 like, 13 replies

13 Replies

  • Puddums
    Puddums JoBlack1

    Posted

    I am scheduled to see Dr Raimondo in Jan. He has a very good reputation. I contacted him about a research study and when he reviewed my information believed that I had been misdiagnosed by a major hospital. His diagnosis was subsequently confirmed by MD Anderson. I will be seeing him to get another, more in depth evaluation/second opinion.
    • JoBlack1
      JoBlack1 Puddums

      Posted

      Thank you!  How long did it take you to get an appointment?  The sooner the better for me as a have to up my pain management quicker then orginally started and would prefer to confirm this is my only option.  The other remedies - juicing, supplementary and natural/holistic stuff has increased my throwing up and added to PC pain.  Let me know how it goes if you wouldn't mind.  JB.
    • Puddums
      Puddums JoBlack1

      Posted

      About a month to six weeks I think but I didn't need quick appointment. My experience so far with Dr Raimindo has been great, I haven't seen him yet but have emailed him and he has responded promptly.
  • mary_kate1973
    mary_kate1973 JoBlack1

    Posted

    Hi JB, I live in Jacksonville and my GI is with the Borland Clinic. Diagnionsed with CP in Feb. 2015...after 6 years of " well we are not sure what's going on?".Mild to moderate pain and now on Zenpac 25,000 3 times a day. Helping.... clearly in the beginning stages of this disease. Had every test, scan done and then some. I highly recommend Dr. Hoffman, who finally listened to my concerns.... Good health to you... MK 
    • JoBlack1
      JoBlack1 mary_kate1973

      Posted

      Is Dr. Hoffman at Mayo Clinic in Jax?  Asking because I have insurance limitations.  I, too am on 25,000 but cut it down to one large meal a day without complications.  When I followed the 3x cause BM issues.  Thank you for sharing!
    • nataliefranc
      nataliefranc mary_kate1973

      Posted

      I also am in my 7th year of 'we don't really know what's going on' been diagnosed with Ibs even though my pain is up high on left side and radiates to my back. It's mild to moderate pain. Worse the day after alcohol but not linked to any foods I can eat fat with no problem. I get short sharp stabbing pains under left breast and in my left side, abdo and back. Over the years I've had tons of bloods nothing ever elevated, endoscopy, colonoscopy, ultrasound, stool samples, ct, detailed MRI of pancreas with dye, everything is completely normal. My only hope that it's not cp is that my stools are never pale or soft and I never vomit. I'm usually constipated and they are normal colour. I'm not tender to touch in fact I press on the area that hurts hard and it feels like it helps and releases gas.

      I used to drink heavily in 20's I'm now 33 and I feel this has taken over my life with worry for last 6/7 years. I'm in a very rocky relationship which I know doesn't help. I'm pinning my hopes on it being gastritis and asking for a repeat endoscopy when I see specialist again in Feb as first one was when this all began almost 7 years ago so hoping it may show this time. Just want to feel healthy for my 3 children and enjoy life again without the cp worry!! I'm in uk by the way. Any reassurance that it could be something else would be great!!

  • mary_kate1973
    mary_kate1973 JoBlack1

    Posted

    Dr. Hoffman is with the Borland-Groover Clinic, beaches location. I believe they may be affiliated with Mayo Clinic but not sure. I know they are affiliated with Baptist as I had several test done downtown at his order. Usually Mayo is pretty strict with insurance. I have United Health Care and Mayo is out of network for me. However, Hoffman is extremely attentive and listens to my concerns, this disease is not main stream which blows my mind! He doesn't make me feel like a "number" if that makes any since and is working hard "with" me to find out the cause and treat appropriately. 42 years old and other wise super healthy.....
  • mary_kate1973
    mary_kate1973 JoBlack1

    Posted

    Hi Natalie, sounds like you don't really have all the classic symptoms of CP- As I mentioned in my last post, I went 7 plus years trying to figure out what was going on. Like yourself, many, many tests and everything was showing normal. My doctor has ordered a blood test to check my IgG4 levels. First doctor to bring this test up out of the last 4...?  If this is elevated it would change my complete treatment of CP as it would considered autoimmune. I would recommend getting a second opinion for sure. Either way eat right and exercise. I started running 2 months ago and can't tell you how much better I feel! Still have a few drinks every now and than and trying to watch my fat intake. Hoping to have my body and mind over power this thing. I can't let this control my life any longer- also, take ibuprofen when your feeling pain. If it is your pancreas, its inflamed. Pain meds just cover the pain. You want to stop the inflammation. That's what cause damage to the pancreas. Good luck and keep me posted. MK
    • nataliefranc
      nataliefranc mary_kate1973

      Posted

      Thank you Mary Kate I did have that blood test you mentioned and it came back clear. I did start exercising and drinking 2 litres water a day and did start to feel much better but I seem to of sunk back into depression again at the moment which makes me drink more than I had been again and makes the pain and worry worse again! I just want some sort of diagnosis! My family and friends are sick of hearing me moaning and I'm sure they think it's in my head!

      Well done for not letting it beat you! I will keep you posted. X

    • jennap04
      jennap04 nataliefranc

      Posted

      My darling, please please get some professional help for your drinking problem... The number 1 cause of pancreatitis is "alcoholism"... I was first diagnosed at the young age of 13 & am now 29. Mine obviously was not caused by alcohol..... You said you have 3 children, please again get immediate help with your addiction!!!!

      Since I have had this for so long now I feel like I could probably be a pancreatic specialist haha & I have seen tons & tons of doctors who have all had me try all kinds of things from diet to pancreatic enzymes & I have also had several surgeries, some which were very very critical & left me in the hospital for months... I got pregnant in 2013 & right at the start of my 20th week, my pancreas started to continuously hurt & I was losing weight instead of gaining & ended up spending the rest of my pregnancy in the hospital!!! Apparently pregnancy & pancreatitis do not mix!!!! As I'm sure you have read, your pancreas is a very critical organ as it breaks down our food & also produces insulin so therefor you really really need to be careful & do everything possible to protect this very tiny yet very important organ!!!

      What medications do you take for pain?

    • nataliefranc
      nataliefranc jennap04

      Posted

      Hi Jenna thank you for your reply. I'm not sure what I have is my pancreas but it is my main concern after drinking a lot in 20's and the fact it hurts the day after alcohol. I never drank horrific amounts but a bottle of wine most nights, bit more on weekends. My fathers an alcoholic and I drink no where near as much as he does!

      I've always had Ibs from childhood but was always low down cramps. My symptoms changed almost 7 years ago when I would feel very full from by stomach right up to my throat as if I was clogged up with lots of stuck bread! Felt like I needed to burp and that would help slightly. I also started getting pain in upper left just below ribs but towards the middle and if I press hard on that area it gurgles really loudly and feels like things are moving along. Also sounds very slushy like pushing a hot water bottle in and out!

      Anyway I was in an awful relationship with my 2 sons dad and got very low and paranoid researching what I could have constantly. I left him after about a year and half of pain and negative tests.

      My pains vanished! For a whole year I was pain free, drinking lots as out quite a lot more than usual then I met my currant partner, had my daughter with him via c section and 2 weeks later the pains were back sad this time they felt like it went through to my back and I would get short sharp stabbing pains under left breast, in my left upper abdo, left side and left upper back, not horrific as they literally last a second and are not that frequent, when I'm in a flare I feel bloated, and like I need to burp a lot, my ribs can sometimes feel bruised to touch on left side. I have never ever vomited from this and I am generally very constipated although been more regular since drinking lots of water. My stools are never pale and eating fats do not effect me. Only thing that makes me flare is alcohol and stress. It's only ever about 6/10 at its worst and pressing the area helps as does lying on my back and massaging my stomach as it makes things move. Ive seen a gastro specialist 3 times now and been discharged with Ibs every time! Ive had tons of bloods, stool test, ct, colonoscopy, endoscopy, MRI with contrast, ultrasounds not one thing shows on anything and my pancreas looks fine they say! I take 10mg amitriptyline daily which helps but that's all I take for this. I have no family history of pancreas problems but my mum suffers with Ibs and similar symptoms to me but all down low. Surely after almost 7 years of this and continuing to drink (although cut down massively in last 2 years) something would show on something or I would at least of been hospitalised? As you seem to know a lot about pancreas issues what do you think? I'm also on gastritis sites and my symptoms sound a lot like that. I am seeing gastro again in Feb and will ask for another endo as not had one since this all started.

      I'm sorry you have been dealing with cp since the age of 13 that is just so unfair.

      Natalie x

    • jennap04
      jennap04 nataliefranc

      Posted

      Hey there! My goodness you poor thing, I'm so sorry to hear about your troubles...

      With my pancreas issues, I woke up with belly pain that got worse rapidly, went to the ER & they did blood work & my amalyse & lipase (have you heard of those??) were super elevated. I got admitted for over a week & was really sick. Less than 6 weeks later, the pain was back & the vomiting which led me back to the hospital. I was getting these attacks every 6-8 weeks & would spend a week or more in the hospital each time. It took them 3 years to finally figure out why I had pancreatitis which ended up being a "genetic disorder" called "Pancreas Divisum" which means that my "bile duct" was split in 2, when it is supposed to be 1. The way it was explained to my parents was that I guess when in utero (in your mothers belly still) you have 2 bile ducts & once you are born they are supposed to join as one but mine still had part of the 2nd one which ends up getting "clogged" as they put it which then triggers my pancreas to become inflamed which then causes nausea/vomiting & extreme pain.... I have had several surgeries, they started at age 16 where they would do an "ERCP" which is similar to an Endoscopy except this goes directly into my pancreas & they would put a "stent" in my bile duct which I guess is like a little tiny plastic tube that is supposed to keep it from getting clogged & it is supposed to fall out on its own once my bile duct becomes open enough to function on its own... Well of course every time it would fall out, it would send me right back into an attack!! So they ended up cutting me open & removing my gall bladder & also did something called a "sphincteroplasty" which is where they "cauterized" my bile duct to try & close off that extra part that continued to get clogged... Well that surgery actually worked for about maybe 3-4 years & I was pain free!!!! And then days before my 21st birthday, I woke up with pain & lucky me got to spend my 21st in the hospital!!! Haha... So about a year or so later the surgeon informed my parents & I that I needed to have a very serious surgery called a "whipple" which is where they removed half my pancreas, half my stomach & part of my intestines!! Oh my gosh, it was AWFUL! 8 hour surgery, 4 months in the hospital due to several complications... And guess what!! Haha that surgery didn't work!!!! So about 3 years ago I had yet another surgery where they cut the nerves to my spleen off because apparently that is supposed to help, but of course- it didn't!!! So here I am, now 29 missing half my organs & my stomach looks like a treasure map full of scars & I still have pancreas issues!!!

      So I have seen a few posts about people being on "amyltriptoline" (I know i totally butchered the spelling), but I have never heard of taking that for pancreas issues... Here you get prescribed that for depression/anxiety issues!! What is it supposed to do for you?

      Also, what pain medicine do they give you?

      Lastly,

      I saw where you talked about your stools & diet stuff & my stools are never affected & I have tried every diet possible & nothing helped....

      To be honest it sounds like you kind of have acid reflux, which can be caused from drinking... Or also you should research an "irritated esophagus", which can be caused due to drinking & it basically kind of burns your esophagus walls (the alcohol does)...

      But that's what comes to mind when you described your symptoms....

      Also, you mentioned asking to have another endoscopy scheduled, do they do that or are they doing An "ERCP", which like I was saying is specifically done for the pancreas...

      I look forward to hearing back from you & I am so sorry that my message to you is so long!!!

    • nataliefranc
      nataliefranc jennap04

      Posted

      Oh my goodness you poor thing! You shouldn't of had to go through all that at your age. That's so unfair. Yes I've heard of most of those things you have had done and mentioned as I've researched this disease a lot myself over the last 6/7 years!! My ducts were normal on my MRI with contrast as everything always is normal!

      The amitryptiline (my auto correct spells it luckily!) is for the Ibs that they say I have as its a relaxant I think and like you said also a treatment for depression and anxiety but that would need a much higher dose I'm only on 10mg I don't want to go down the antidepressant route if I don't have to, I've tried them before and don't really help me, I know what's making me depressed being in yet another rocky relationship and worrying about what's wrong with my stomach! If both of those were fixed I would be happy lol! So don't think they would help!

      I wouldn't want to risk an ercp as its very ivasive and I've heard it can irritate the pancreas and cause an attack even if your pancreas was ok to start with! Eus isn't so bad and that looks at pancreas so hoping for one of those. But even a normal endoscope would be better than nothing as I'm pretty sure I have acid damage in my stomach. When I used to drink wine every night I was always dieting so no doubt my stomach was empty and just ploughed with acidy red wine! Wish I'd looked after myself better but I thought I was invincible!

      So sorry that you have been through so much and still in pain. It doesn't seem to be a very well researched disease.

      Natalie x

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