Post Cholecystectomy pain for past 8 months, now with seizures

[Nylene]

We are desperately in need of help for our daughter (age 28) who had a lap. chole. in February of this year.  Ten days after surgery she had a severe attack of epigastric pain, so severe that she went to the ER in the middle of the night.  Every blood test was run, all were normal.  These attacks to someone watching resemble a kidney stone attack but are beneath the sternum. She cannot stand still or lie down, she is constantly rocking in a fetal position or walking hunched over for as long as 6 hours before she gives in and goes for a pain injection.  Her surgeon brushed her off after doing a CT scan saying it was nothing he did.  The G.I. doctor did scopes from top to bottom and had blood drawn during the attack to check bile levels. All were normal. He found no cause.  He gave her steroid injections into the area, which increased the length of time between the attacks from 4 days to 7 days, then sent her back to her surgeon who shook his head and prescribed Zelnorm, to no avail.  After our pleading for help he sent her to an anesthesiologist who has been giving her

[elpee]

A related discussion, Postcholecystectomy pain was started.

[krisg]

Hi, I have gone through the EXACT same thing as your daughter.  My pain and attacks started within a couple of hours after my gallbladder surgery.  It went on for years, as I was told it was just acid reflux and IBS.  I finally (after 6 years) found out that it was Sphincter of Oddi Dysfunction.  The liver and pancreatic enzymes are sometimes elevated, but NOT always.  I have been fighting with this for 6 years now and I have had 2 theraputic procedures to try to help.  Tell your daughter to get to a University hospital, or if possible, University of Indiana.  I personally see Dr. Lehman there and he is the best endoscopist!!  If something is wrong, he is the doc who can help her.  I wish you luck and let me know if you need any further info.  I'd be happy to help.  You can also email me at ***@**** for any other questions you may have.
Good Luck
Kris

[schaeff]

I really sympathize with your daughter.  Although I did not develop seizures, I had (and still get) the exact same pain that began right after my lap chole. Starts feeling like hunger pangs about 2-3 hours after each meal. Within a few minutes it radiates to the Right upper quadrant and back and feels like a thin wire being pulled tight around my midsection just below my rib cage. Pain is 7.5 on a 1-10 scale.  Thankfully, and completely inexplicably, I get complete relief by eating another meal or drinking a large glass of water (no, it isn't a duodenal ulcer as a I had a completely normal EGD during my two years of testing and failed two PPIs and an H2 blocker).

I find that if I pay very close attention to the very first signals, even if I can't get to water or food, I can take a medicine called levsin, under my tongue, and diffuse whatever pressure buildup is beginning.

Two thoughts for you to consider.  1) Get her to a major academic medical center and get worked up by a bilary specialist(if you search "sphincter of oddi dysfunction" on Medline and read a few dozen abstracts you'll start to see the repeating names, like Sherman at Indiana, Kalloo at Johns Hopkins, Bert Petersen at Mayo, Minnesota, etc.) 2) The procedure that Dr. Kevin cited, the ERCP with sphincter of oddi manometry, has a relatively high complication rate (up to 25% get pancreatitis) and even cutting the sphincter may not resolve the problem. Your daughter should be very informed and under the care of a first rate bilary endoscopist before subjecting herself to this.

Hoping for the best for your daughter.

Marc

[Kevin Pho, MD]

There has clearly been a pretty comprehensive evaluation done already, including MRIs, EEGs and upper and lower endoscopies.  One consideration would be Sphincter of Oddi dysfunction - which can cause gallbladder-like symptoms in those who have had a cholecystectomy.  The best test to evaluate this would be an ERCP with sphincter of Oddi manometry.

You may want to also consider delayed gastric emptying - which can be evaluated with a gastric emptying scan.  This can also cause chronic nausea and vomiting.

These options can be discussed with a gastroenterology referral - you may want to consider a second opinion.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
Medical Weblog:
kevinmd_b

[Nylene]

Thank you for your input.  We have an appt. with another surgeon on Thurs. and hope he will LISTEN. The GI she saw was concerned about bile duct injury, but said the CT scan ruled that out.
  We have come up with a theory that perhaps she has a hole in the diaphragm that allows a portion of bowel(or lower end of stomach) to get caught causing the horrible pain. (10+ on 1-10 scale)
She writhes for hours then gives in and goes for a pain injection which usually takes the edge off.  If she has a hernia which catches bowel and then allows it to slip back into the abd cavity, it would not necessarily show up on any of the tests she has had if it weren't caught at the moment.  This may be just grasping at straws, but she can't continue to live in this pain. Her seizures start when she has had multiple attacks of this pain several days in a row.   It was suggested that she eat when she first feels that "hunger-like" pang, but when she has tried that she just vomits it up as the pain gets to a 9 or 10. (Along with her seizure meds) We have only one big teaching hospital in the state, and it is not covered under her very small panel ins. plan.  We are ready to pay whatever it takes to get her fixed.  We feel that the seizures would diminish or stop completely if we could find the cause of the epigastric pain and eliminate it.

[yoshi]

It looks like John Hopkins hospital may be one of them-
LAPAROSCOPIC GI SURGERY EVALUATED IN MARYLAND
February 9, 1994
Media Contact:Joann Rodgers
Phone: [phone]
E-mail: ***@****

A Johns Hopkins study has found that after the introduction of a new surgical technique, more Marylanders elected to undergo surgery to relieve gallbladder pain. Surgery rates increased by 28 percent overall says the study, and the use of the new, less invasive, laparoscopic procedure skyrocketed, especially among those in health maintenance organizations (HMOs).

The study is the first in Maryland to analyze the pattern of a procedure called laparoscopic cholecystectomy, or 'lap chole'. According to the researchers, the procedure met unprecedented acceptance shortly after its introduction in 1989, without having undergone the scrutiny of a prospective randomized clinical trial.

"As a result, there were many concerns about safety, who got the procedure and when," says Claudia Steiner, M.D., M.P.H., lead author of the study, which appears in the February 10 issue of the New England Journal of Medicine.

By 1992, 76 percent of all gallbladder removals in Maryland were performed laparoscopic. Meanwhile, traditional open surgery for gallbladder removal decreased by 70 percent over the same period, says the study.

Surgical death rates plummeted as well declining 33 percent from 1989 to 1992, the period when lap chole use was on the rise. Because of the increase in the number of choles being performed, however, the total number of operative deaths related to chole remained constant, says Steiner.

"Historically, surgeons wait for the results of intense testing to use a new procedure such as this," says Mark Talamini,, MD., a general surgeon and co-author of the study. "But there were many patients putting up with pain for years in order to avoid surgery. Lap choles were thought to be safe, less painful less disfiguring and associated with less hospitafintion and quicker recovery time. So surgeons signed on at the prompting of their patients."

Lap chole rates continued to climb through 1991, but by 1992, reached a plateau in Maryland a finding never identified before. "We suspect that with lap chole there was a change in the mindset of patients and surgeons, both more to consider this less invasive procedure," says Earl Steinberg, M.D., M.P.P., a co-author of the study,

The study also offers unexpected insight into the practices of Maryland insurance providers, says Steinberg.

"Interestingly, patients with HMO medical insurance are more likely to receive this new procedure study showed that HMO users received the same, than people with indemnity insurance," he said. if not better access to this new technology."

Steinberg directs the Johns Hopkins Program for Medical Technology and Practice Assessment. He and others evaluate medical procedures, devices and drugs, measuring results, quality of care, patient and tubular instrument passed through a small satisfaction and cost-effectiveness.

Laparoscopic cholecystectomy uses anincision, usually in the bellybutton. With additional tools, the surgeons can detach the gallbladder, and remove it through the incision to relieve chronic pain caused by recurrent bacterial infections and gallstones. According to Talaminil, studies suggest that some complication are associated with lap chole, including an increased risk of injury to the common bile duct, from roughly one in 1,000 cases to one in 500 cases.

Other authors on the study include Eric B. Bass, M.D., M.P.H., assistant professor of medicine with a joint appointment in health policy and management at the Johns Hopkins School of Public Health, and Henry A. Pitt, M.D., professor of surgery.






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[yoshi]

search the web for 'lap chole injury' and you will find info on past injuries,lawsuits etc.

[renee1952]

I would go to one of the top University Hospiatals to be evaluated. They are very good at finding things that it seems other doctors can't. They specialist in rare disorders.