does anyone know if there is a special place in maryland that has a good pancreas institute or something. people keep telling me i have to bring him to maryland and i dont know where??
thanks so much
an update onmy husband
last week he started having pain almost in the chest area he says he pulled a muscle but this is how his last psudocyst presented itself
he is being very stubborn?
also is there anyone in the central florida laocation that maybe would want to get together i think my husband really needs to be with someone who can relate with his fears and pain
thanks again
love to all
maria
Hi, Maria–
I live in MD and would strongly advise you NOT to use Johns Hopkins. I’d be happy to discuss the “why” anytime-- and if you email me (lisa@lisabard.com) I can fill you in more.
That being said, after injury and some horrible other things, I was eventually referred for consult to Dr. Bill Steinberg in Rockville, MD-- He’s a past president of the American Pancreas Assoc. and only does consults/research on pancreatic disease from what I understand. He’s still helping me out and has been great so far.
There’s another “expert” at Georgetown Univ. Medical, but as of a recent consult with him (a follow-up appt.) I was not very impressed and have been left not really knowing what to do… but knowing something is still very wrong. I just hope I’ll get some help soon… but not sure of anything great in Maryland, unfortunately. The most awesome help I’ve gotten out here is on a local hospital’s oncology unit (Holy Cross Hospital). They know me well at this point and have been great in understanding pancreatic pain, Mediports, etc. The problem is that there’s no great GI doc to follow me… but they’re good at TPN and maintenance and caring greatly.
One note on your husband… Please encourage him to get checked out-- chest pain is not something to mess around with. Also, I understand that Mayo in Jacksonville, FL might be another place to check out–
All the bests and many hugs,
Lisa
Hi, Maria–
I’m not sure where the post went, but there was the suggestion of seeing Dr. Eric Goldberg at the Univ. of Maryland. I also have a consult pending with him, but the soonest date I could get to see him was mid-December… and I called a while ago. I’m still holding out that he’ll have something good to offer, but it seems he’s got a very full schedule. Maybe that’s a good sign!!
Hugs,
Lisa
I, too, live in Maryland. I had a horrible experience with Hopkins. I was referred to them shortly after I had six attacks of acute pancreatitis within as many months right after I graduated high school in 1997. They were extremely aggressive, but once they ran through their list of things that were supposed to “fix” me, and I was still sick, they literally turned me away. And the ER there is a nightmare. I also saw doctors at Univ MD, though not the one mentioned here, George Washington, George Mason, and six other hospitals in MD. I also saw Dr. Williams Steinberg for about five years starting when I was 20; he was the GI I had the longest, actually! He did what he could, I suppose, but after a number of procedures, including a pancreatecjujenostomy (Frye procedure) and a referral by Steinberg to the Mayo Clinic (a pointless trip), after which, my reurrent acute pancreatitis became chronic, it was primarily pain management. My diagnosis is the chronic pancreatitis of the good ol’ idiopathic kind. My 23 year old brother, though, has had three acute attacks in the last two years, so it looks like it may be hereditary. I stopped seeing Dr. Steinberg, since he wasn’t able to do anything besides medicate me, and focused on seeing a pain doctor. There is a good pain clinic outside on Baltimore – Dr. Nelson Hendler at Mensana Clinic. It is strictly pain management, though; he’s not a GI.
Much drama later, the “treatment” I actually receive now for pain is methadone. At age 25, after six years of taking pain meds daily, I decided that I was thru taking narcotics every day, and stopped seeing my last pain doc after getting a final rx, thinking I’d wean myself off. Well…we all know how well that works – not! So, in serious pain and withdrawl, I took the advice of a friend I met in the pain clinic and went to a methadone clinic. My intent was to wean off my pain meds using the methadone, but I found that I wasn’t able to, because of the debilitating pain. I increased my dose. I have tried a few times to wean off, as I will get to point where I think I can handle the level of pain. I seem to always forget that the level of pain I can handle is with the methadone. It is now a ocuple years later, and I am still in the clinic. This was not what I wanted – I did/do not want to have to be on daily pain meds. But, as we all have learned, this disease isn’t about doing what we want, it’s about doing what we have to do to make it through the day.
By the way, anyone have a current number for Dr. Steinberg? I need to get ahold of some additional records he has and only have his old ofc number.
Thanks! 
~Kristin~
Hi Kristen,
Could you tell me who you saw at Hopkins? My daughter goes there and only there-we live in Pa. She has been seeing her specialist there since she was 12 (now 19) she does have the hereditary. She also had the Puestow last Oct. at Hopkins. I know what you mean about their ER-it’s unbelievable, I’ve driven there in the middle of the night many times and ask them to put her in the pediatric ER-it’s alot calmer.
I’m so sorry about what you are going through-my daughter still has daily pain but better than last year, but still taking meds. I was interested in your methodone treatment-do you function better on this than the other meds, or is it more of a hassle receiving it through a clinic? Have you had any of the pain blocks done-they recommended this to my daughter at our local pain management, but her specialist said no-he feels it is a tease, but the pain people say sometimes after you’ve been in pain a long time you need to reboot the nerves. Have you ever been told this?
It sounds like hereditary is in your family too-we have it all over in ours, we did the testing in Pitts. many years ago-my one daughter has it, my other one doesn’t.
Please take care and if I can help in any way, please let me know.
Thanks for your info.
Terri
Hi–
I’m expecting to get tested for hereditary CP since IV Toradol (anti-inflam.) seemed to help the pain somewhat. Any info is always helpful, and I remain hopeful that one day the pain will stop from all this.
Dr. Bill Steinberg is now in Rockville, MD and his number is 301-762-5020. He’s located at 1201 Seven Locks Rd. #111. He’s said he doesn’t do any admissions or procedures anymore, but is there for consults and is doing research, etc. on pancreatic diseases.
Hope this helps-- many hugs,
Lisa
Lisa, i was just changed to toradol a couple of weeks ago and to my surprise it does help ! i wondered if anyone else was taking it. and you mentioned that you do!
julie
Lisa,
I am so happy for you and I certainly hope that this will be your “silver bullet” for settling this pain and suffering down.
Love you,
Anyse
Lisa and Julie,
What, exactly, is toridol, and to what medicinal family does it belong?
Anyse
Anyse,
I am neither Lisa nor Julie, but according to medscape, Toradol is an NSAID. In addition, the detailed monograph has this to say about it: Ketorolac is a prototypical nonsteroidal anti-inflammatory agent (NSAIA) that also exhibits analgesic and antipyretic activity.
Also:
Ketorolac tromethamine is used for the short-term (i.e., up to 5 days) management of moderately severe, acute pain. The manufacturer states that the drug is not indicated for use in minor or chronic painful conditions.
The potential benefits and risks of ketorolac therapy as well as alternative therapies should be considered prior to initiating ketorolac therapy. The lowest possible effective dosage and shortest duration of therapy consistent with treatment goals of the patient should be employed.
Ketorolac tromethamine has been used for the symptomatic relief of moderate to severe postoperative pain, including that associated with abdominal, gynecologic, oral, ophthalmologic, orthopedic, urologic, or otolaryngologic surgery. Ketorolac tromethamine should not be used in obstetric patients as a preoperative medication or for analgesia during labor since inhibitors of prostaglandin synthesis (e.g., ketorolac tromethamine) may affect uterine contractions and fetal circulation. In addition, ketorolac tromethamine should not be used as a preoperative medication for support of anesthesia, since the drug does not have sedative or anxiolytic effects but may inhibit platelet aggregation and prolong bleeding time. Ketorolac tromethamine also has been used for the relief of acute renal colic, pain associated with trauma, pain associated with vaso-occlusive crisis of sickle-cell disease, and visceral pain associated with cancer. IM ketorolac tromethamine generally produces analgesia comparable to that of moderate IM doses of opiate analgesics. However, unlike opiate agonists, ketorolac tromethamine does not appear to cause respiratory depression and there is no evidence that therapy with ketorolac tromethamine results in physical dependence on the drug.
When used to relieve moderate to severe pain in adults, a single 10-mg IM dose of ketorolac tromethamine has been reported to be more effective than placebo and at least as effective as a single 6-mg IM dose of morphine sulfate, a single 30-mg IM dose of pentazocine, or a single 50- or 100-mg IM dose of meperidine hydrochloride. A single 30-mg IM dose of ketorolac tromethamine has been reported to be more effective than placebo or a single 6-mg IM dose of morphine sulfate and at least as effective as a single 12-mg IM dose of morphine sulfate, a single 30-mg IM dose of pentazocine, or a single 50- to 100-mg IM dose of meperidine hydrochloride. The duration of analgesia produced by single IM doses of ketorolac tromethamine appears to be longer than that of single IM doses of morphine sulfate or meperidine hydrochloride.
In a short-term (up to 5 days) multiple-dose study in adults with moderate to severe postoperative pain, IM ketorolac tromethamine doses of 30 mg were more effective than IM morphine sulfate doses of 6 mg and as effective as IM morphine sulfate doses of 12 mg; the drugs were administered at an average frequency of every 5-6 hours. When used to relieve severe sciatic pain, IM ketorolac tromethamine dosages of 30 mg 4 times daily have been at least as effective as IM ketoprofen dosages of 100 mg twice daily.
Best,
Warren
Warren,
Nice answer and thank you.
I looked up more about toradol and also learned that, should one have the flu or any other illness that creates a higher fever, toradol can be used for its antipyretic (anti = against, pyretic = fire) activity. However, because it can lower a fever so much, it can also extend the length of influenza type illnesses as it may lower the body temperature too much such that the pyretic activity of the body is precluded from fighting off the viral agents with the necessary required fever. Very interesting!
Anyse Joslin
anyse1@mac.com
Hello, everyone.
After reading about all the procedures, and all the interstate hopsital visits, I need to ask a question without trying to offend anyone. I too, want hope, and I too, want to tell my daughter that the pain will somhow go away, but I have now been told from the Cedars docs that the reason why the pancreas doctor hasn’t come to see her in the last month, (or any gastro doc for that matter) is that her pancreatitis is chronic and there is nothing more that can be done. No medications seem to take her pain away, and what the stenting procedures have done for her is gave her more pancreatiits, made acute flare=ups. Shes no different from you people, except that she is a teenager, she is turning 17 this year, thank God, because this year, she almost didn’t make it.
But the question I pose iss, has anyone seen improvement with these procedures? Have they extended your lives? I’m sure if I look long and hard enough, I’ll find a doctor willing to cut her, but is it the correct thing to do? To keep looking for that elusive cure? The total pancreatoectomy seems so drastic, and she is so young to contract type 1 diabedes. I don’t think I can make that decision for her. I won’t, she is too close to adult age, when she can decide for herself. I’m sorry about this rambling, but I really don’t know where to go from here? Out of state? Any ideas?
Jill
You are at Cedars in Los Angeles? I would check in to the program at USC - they have a high volume GI center there, with Pancreatic Specialists. Perhaps they can give you some insight. They have info on the web, too…although I can’t find my link to it…I think its under USC Medical Center - Digestive Diseases, then search for Pancreatitis as a specialty. Hopefully you may find help/info there.
Keeping you in my prayers.
Susan