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Do you suffer from "Sphincter of ODDI?" Have symptoms that nobody can relate to? Spend some time here and see if this site can help you.
 
 

Our Journey:

Wow, where to even begin? Unfortunately this health concern affected my wife who was 32 years old at the time. Together we have one son that is 13 years old. A few years after our son was born, she had a full hysterectomy performed due to severe endometriosis in approximately 2007.

Dr. #1 - What we initially thought was a digestive problem started in 2008. She complained of "Pressure" and abdominal pain. The first Dr. we saw in regards to this was her normal Dr. He put her on some prescribed stomach medication and insisted that she had IBS (Irritable Bowl System). After approximately one month, the pain did not go away, yet it seemed to get worse.

Dr. #2 - After returning again to the normal Dr., he referred her to a Gastrointestinal Specialist. This Dr. went over the usual Q&A and scheduled an Upper GI Scope. After analyzing the results, he concluded that she had IBS and had to live with it because the results didn't yield anything abnormal.

Dr. #3 - Since our local clinic only had one GI Specialist, we decided to try another city in another state. This Dr. listened to what we told her and thought that she had GERD and/or esophageal spasms. She scheduled a 3 Probe esophageal manometry. Once again after the results came back, there wasn't anything indicating that the data was abnormal, however she put her on additional medication and told her to quit the IBS medication. She also referred us to the Mayo Clinic in Rochester, Minnesota.

Dr. #4 - Fortunately for us, we were excited about the referral because the Mayo Clinic was ranked #3 in the Nation. We thought for sure we would get closure, however the visit was almost two months away. This meant that my poor wife had about 60 more days of dealing with this daily pain. We decided again to try our local clinic and speak to a different Dr. This Dr. took one look at her records, gave her a physical exam, and told us to wait until we see the Dr.'s at the Mayo Clinic! In the mean-time my wife is dealing with this pain and coping with it by taking Vicodin or other pain killers. To make matters worse, most Dr.'s wouldn't prescribe pain medication because of our age and the fear of being addicted. It's sad when junkies can complain of the slightest ache and get bottles of narcotics, yet for a legit patient with legit pain, they won't do anything.

Dr. #5 - So now we're getting close to the Mayo Clinic appointment when we get a return phone call from Dr. #3. She wanted to get a couple tests out of the way now before we went, since they're closer than the Mayo Clinic. Made sense to us so we went ahead with her suggestions. She scheduled a Barium CT Scan, blood work, and said that she'll forward the results to the Mayo Clinic for their records.

Dr. #6 - Finally we get to the Mayo Clinic which is 7 hours one way! By this time we've exhausted sick time, vacation time, and most personal time. You know what though; we're desperate for answers. We want closure! We end up staying one full week at the Mayo Clinic. This Dr. (which is another GI Dr.) schedules the following: 9 probe esophageal manometry, blood work (Thyroid), stress test, echo cardiogram, and an anorectal manometry. After reading the results he also concludes that she has esophageal spasms and the medication will take time to work (approximately 4 weeks). We also made him aware of the fact that she is constipated 90% of the time which is why he did the anorectal manometry. In the end of this visit he prescribed her with a different esophageal spasm medication than Dr. #3 and told her to try Metamucil to assist with the gas and bloating pressure caused by her colon. He commented that we're to return in approximately 4 weeks.

Dr. #7 - After returning home and trying the medication, it was evident that is was still not helping. Since we already had a follow-up visit to the Mayo Clinic we were confident he'd find something else however, that was about 4 weeks away. This led us back to our local clinic and decided to try another Dr. hoping that the prior visits might have missed something. Dr. #7 ordered blood work, abdominal scan, and prescribed Cymbalta.

WOW!! - By this time we're extremely frustrated and have given up on Dr.'s. I mean look, if it isn't the common cold or sickness they specialize in or deal with daily; they're confused and lost. 99% of the Dr.'s we saw did not put personal time into this and we honestly knew that they didn't care! One Dr. even insisted that this was a "mental" pain. We're starting to do our own homework now and researching because the medical field has failed us. We're providing possible explainations of what it could be and they're listening to us! It's scary, I mean REALLY scary when the people we count on are clueless and/or simply don't care.

Dr. #8 - After returning back to the Mayo Clinic, Dr. #6 starts trying to rule out other possibilities. We saw a cardiologist at the Mayo Clinic that gave her an exam and bloodwork. After describing her pain to him along with the stress test, and echo cardiogram results, he strongly felt that this was not related to cardiology. As a matter of fact, his notes indicated that he felt like she had costal chondritis. Dr. #6 reviewed his notes and was also now convinced that this was costal chondritis. Yes, he changed his diagnosis! He then prescribed a heavy anti-inflammation medication and told her that he would like to see us in 4 weeks because the medication will take time to work.

Dr. #9 - After returning from the Mayo Clinic she gave the medication time to work, however it didn't. At this point I'm starting to think that maybe they're all wrong and we are looking in the completely wrong area. I suggest to her that maybe this problem is related to her back. She's had almost every possible test and scan relating to the front area but nothing in relation to her back. Almost 10 months after starting this process, we're no better off than when we started. Actually we were worse. I schedule her at the local clinic with a Sports Medicine Dr. This Dr. was different though, he seemed to care. He wanted to know everything and took time to read through her history. He was skeptical that it probably wasn't her back but said that "Nerve Bundles" could cause this pain. He ordered back/spine X-Rays, MRI, and then referred us to a General Dr. for further steps. In the end, it was a let-down for us because he was acknowledging that she had pain, but just didn't have the ability to do anything about it. It was beyond his capabilities.

Dr. #10 - On to Dr. #10! Yea, the secretaries, pharmacy's, and even people we didn't recognize or forgot knew us. We were persistant and would never give up. Fortunately Dr. #10 would be one of our last Dr.'s. Once again we found another Dr. that seemed to care. He not only read over her entire history but took the time to just listen to her. He was a Dr. so obviously he knew and followed "medical statistics " but didn't believe in them to the extent of not performing a procedure because of them. He was baffled that her gallbladder had not been removed or considered previously. He scheduled a hida scan, noted that the results were elevated but not beyond what most Dr's refer to as protocol to remove it, however he was 95% convinced this was her problem. He also informed us that he believes that there's more than one issue causing all of this pain. We agreed to move forward and do it. After the gallbladder was out she noticed SOME relief except that the pressure was still present. Upon a follow-up visit he was really beside himself because he was wrong in some sense. Rather than giving up and passing us to another Dr. he ordered a barium enema, blood work, colonoscopy, and another upper GI scope. After reviewing these results he noted that she has a redundant colon, meaning that it's longer than the average persons and this COULD be twisting up causing the pain. He offered the option to cut and shorten the colon but in my opinion this was not an option. For 1, she's always had this colon yet didn't have the pain until 2008. #2, it's VERY risky. He agree'd and suggested that it sounds like she has Sphincter of ODDI. He explained to us what could be done to correct it however our local hospital did not have the equipment to perform the procedures. So guess what.....yep, he refers us to another Dr.

Dr. #11 - Hopeful and feeling a BIT better we head back to Minneapolis, Minnesota for answers. We met with Dr. Timothy Kinney (GI Department) at the Hennepin County Medical Center. He also reviewed her entire history and ordered up an endoscopic ultrasound, MRCP, and a endoscopic sphincterotomy. He took the time to explain to us the risks involved and the possible outcome. At this time he classified her as SOD Type III. We had some decisions to make but honestly knew that we were running out of options. We decided to follow through with the endoscopic sphincterotomy. It required us an overnight stay to ensure that the risk of pancreatitis was not an issue. The final procedure consisted of an endoscopic sphincterotomy including 2 stints in main duct and pancreas duct. Dr. Kinney did mention that the pressure reading was somewhat elevated but the muscle was tight. He mentioned to me post-op that he had a "Hunch" that this was her problem.

Conclusion - Two weeks after the procedure 95% of the pain was gone, and 4 weeks later, completely gone! She did have to return 4 weeks post-op and get x-rays to see if the stints passed. The main bile duct stint passed but the pancreas stint did not. Our fear of removing the stint and surfacing the pain again was very strong but the Dr. reassured us that if the stint is not removed it could case pancreatitis. After removing the stint, she is perfectly normal. All of the pain is gone.

 

A Summary of Previous Medical Diagnosis from 2008 to 2009:

 

A Summary of Previous Medical History from 2008 to 2009:

  • Laparoscopic Hysterectomy on Jan 2007 (Ovaries Remain)
  • Gallbladder removed in Feb. 2009
  • Upper GI Scope
  • Lower GI Scope
  • 3 Probe Manometry (Older Technology)
  • 9 Probe Manometry (Newer Technology)
  • Various Blood Work
  • Stress Test
  • Echo Cardiogram
  • CT Scan with Barium
  • Colonoscopy
  • Lower Abdominal Scan
  • Ultrasound and MRI of Back
  • Barium Enema
  • Anorectal Manometry
  • Chest X-Ray
  • EKG
  • MRCP
  • Sphincterotomy

 

A Summary of Previous Medication from 2008 to 2009: