By Brooke Keefer
Finding a qualified Sphincter of Oddi Dysfunction (SOD) doctor is the first and most important step in getting an accurate diagnosis. It is imperative you only seek or rule out an SOD diagnosis from an “SOD doctor”—a doctor who will diagnose and treat SOD. The doctor you are seeking will likely be a gastroenterologist, depending on which country you live in. As of this writing The Sphincter of Oddi Dysfunction Awareness and Education Network has an SOD doctor list on its website (http://www.sodae.org/sod-doctors.html). Please note that although this list is based on recommendations from SOD patients, there may be other SOD doctors we are not aware of. Also, the list can become outdated at any time as we receive emails regularly from patients asking us to add or remove a doctor. Other ways to locate an SOD doctor are asking other SOD patients or searching online for your area.
Whether you find an SOD doctor on an online list or one is recommended, call and interview him or her or their staff. Doctors change specialties and just because one is on an SOD list or helped another SOD patient doesn’t mean they still diagnose and treat SOD. Be specific. Ask if he or she tests for and treats SOD. Do not waste your time with a doctor who will not consider SOD as a diagnosis and most importantly, be aware some doctors do not believe the condition exists.
The Best SOD Doctor Believes in SOD
It is crucial you find an open-minded doctor as any delay in obtaining an accurate diagnosis could be detrimental to your health and well-being. Recently I had a front row seat to the repeated misdiagnoses of two women. They were told over and over by high ranking nationally-recognized gastroenterologists they couldn’t possibly have SOD as their enzyme levels were only slightly elevated and their bile ducts moderately dilated. The consensus was they either had Irritable Bowel Syndrome (IBS) or a neuralgia. They went from doctor to doctor suffering and unable to work or function in life. Fortunately, these women did not give up and through much trial and error they found an open-minded SOD doctor who diagnosed and treated their SOD. They are now back to their normal routines.
To lay claim that the biliary, pancreatic, and oddi sphincters are the only parts of the human body 100% free from dysfunction or dysfunction of these sphincters could not cause debilitating symptoms is just plain impossible. You would be a robot if this were true as no organ or body part is perfect and without the potential for defect and symptomology. Alternatively, many doctors now have stringent parameters, i.e. liver and pancreatic enzyme levels, dilated biliary duct and other criteria, and will not consider SOD in women who have disabling symptoms and fairly normal test results. This is wrong as it is well documented that many patients can have fairly normal test results yet still suffer terrible SOD symptoms.
Keep in mind that not everyone who thinks they have SOD actually have it. What is important is that each and every one of us receive an accurate diagnosis. It is highly likely that if you go through the extensive battery of tests for SOD, you will find your way to a diagnosis that explains your symptoms and will determine appropriate treatment
An SOD Doctor Must be a Good “Match”
If you find an SOD doctor—one who believes in SOD and is knowledgeable about the condition you will also want a doctor who is compassionate, smart, fair, honest, respectful, and spends quality time with you. It is kind of like dating. If only there was an online dating service like Match.com for SOD doctors, life would be so much easier.
I know it is near impossible to pinpoint a doctor’s qualities before meeting him or her. In my experience, the best way to find out about a doctor is from other patients. Look for online reviews. There are websites where patients can rate their doctor. Some include patients’ comments. Plug the term “doctor rating” into any search engine and the top doctor rating sites will appear. I personally will not see a doctor who has less than a four-star rating on these sites. My health is a life or death matter. I take it very seriously and refuse to have substandard doctors on my care team.
Another way to learn about a doctor is through online support groups and forums. This is how I found the SOD doctor who diagnosed me. I had to travel halfway across the country but it was worth it. Rarely have I seen a patient dissatisfied after seeing an SOD doctor recommended by another patient. The only instance I have witnessed this was when a doctor suddenly did an about face and no longer believed in or treated SOD. This is why you should still ask the office staff of a recommended doctor whether he or she diagnoses and treats SOD before scheduling an appointment.
I cannot impress upon you enough that finding the right SOD doctor is the most important thing you can do. You are already sick. Trust me, if you go to a doctor or several doctors who mistreat you, refuse to validate your symptoms, and who are not open minded to SOD it will make you sicker from the traumatization and prolongation of symptoms.
Reality: You May Need to Travel
If your insurance covers it, and you either have or can raise enough money to travel, I strongly encourage you travel to see a top notch SOD doctor. As I mentioned, I had to do this and wished I had done it from the beginning, avoiding the nightmare I went through with local doctors. If you ask the doctor’s staff, they will likely be able to recommend a hotel that offers a medical discount. My mother and I stayed in a very nice hotel at a great rate within walking distance to the doctor’s office and hospital.
Air travel is expensive but you can search online for good fares. Let the SOD doctor’s staff know you want to try a few different dates and ask if they could give you a few appointment options to allow you to find the best travel deals. If you go to a discount travel site, be sure to use the tool where you can search two to three days before and after your desired day of travel. This is an important tool to find the best rate. Also, some major metropolitan cities have a few airports to choose from, so be sure to also check off the box to search nearby airports. If you are not airline savvy, ask friends and family to help find you the best rates. There is usually someone we know who is familiar with travel sites. Of course, you could also contact a travel agency to help you find a good rate.
Another option is to find an SOD doctor within driving distance who takes your insurance. I know many SOD patients who drive several hours to see a good SOD doctor. Often they have to cross state lines. The only financial issue, besides gas, that may arise is if you need a procedure that will land you in the hospital for a day or more. You may not need a hotel room, but your loved one(s) may. Distant relatives and friends can come in handy in these situations for a place to crash.
Many insurance policies, unfortunately, are restrictive about which doctors you can see. I have had policies where I could see nearly any doctor, anywhere in the United States. Then, there was the year when my husband’s insurance changed and I could only see doctors in my area. It was awful. No local doctor acknowledged or understood SOD so as you can imagine it was a bleak year. If this is the case for you, your insurance policy may allow you to go out of network if there is absolutely no doctor to serve your needs. It is difficult to prove this. If it looks like your insurance won’t be changing anytime soon, at least find a local doctor open minded to SOD who, if unable to diagnose you, will advocate on your behalf to the insurance company to justify out of network treatment. I honestly couldn’t find such a doctor but that doesn’t mean you can’t. I know patients with SOD who won this argument after they found a doctor to advocate for them. If you are in a country where insurance isn’t an issue like it is in the U.S., congratulations! That being said, I do know, from the people I have met online, there is an SOD doctor shortage in most countries. This is beyond frustrating and will hopefully change.
The First Appointment
Many specialists, especially sought-after SOD doctors, are booked months in advanced. It took me one to two months to get an appointment with local gastroenterologists and three months for the out of town world-renowned SOD gastroenterologist. It was scary to wait three months for an appointment as I was drastically losing weight, experiencing muscle atrophy, fainting from orthostatic blood pressure and living with constant nausea and pain. It may as well have been a year. That three months felt like forever.
Over time, I figured out a way to get an appointment sooner. First, when I needed an appointment sooner, I asked to be placed on a cancellation list. Therefore, I would be called when a cancellation came in, depending on where I ranked on the list. Sounded easy, but I often waited and waited and waited for that call. I was perplexed. Why weren’t they calling me? People cancel all the time. I have cancelled many appointments in my lifetime. One day I was complaining about this to a friend of mine who worked for a large doctor’s practice. She told me the cancellation list was only as good as the person holding the list. She informed me that some office workers were religious about ensuring cancelled appointments get filled by those on the list and on a first come basis. Other workers completely neglected reaching for the list to make these phone calls. Instead, they filled cancellations with whomever called next asking for an appointment.
A few days after making your appointment, start calling several times a week asking if there are any cancellations or openings. My most successful days securing appointments were Friday afternoon and Monday mid-morning. I think in some cases the office staff got so sick of my repeated calls they invented an appointment slot for me! Today, I never wait more than a month for an appointment. Heck, if I called every day instead of several times a week I probably would have secured an appointment in a week or two. That old saying, “the squeaky wheel gets the grease” rings true.
Be prepared at the first appointment. Treat this appointment as if you were interviewing someone for a job. Prior to the appointment write down your questions. This doesn’t mean you immediately slam the poor doctor with a million questions. Allow the doctor to physically examine you and ask you questions first. The doctor will ask why you are seeing him/her and what symptoms you are experiencing. Whatever you do, do not walk into your first doctor’s appointment telling the doctor you have SOD or rattle off everything you learned about SOD online. It is the doctor’s job to diagnose you, not for you to diagnose yourself.
Things to tell/ask the doctor:
Some doctors may not like to discuss every possible test and rather focus on one test result at a time. What is important, though, is for the patient to know that the doctor is committed to exhausting any and all possibilities, within patient safety, to pinpoint the cause of the symptoms. If your doctor seems amenable, ask him to describe an estimated timeline of “if this test is normal then such and such will be the next test, and the next, and so on, and the timeframe of each process.” If my local doctors had been more transparent about the diagnosis and treatment process, my anxiety would have been less, symptoms a little better, and life a bit easier. The unknown is not a good place for a patient who is suffering. Arming the patient with as much information as possible and practicing full disclosure is best practice. Ask if there are any other possible diagnoses for the symptoms you have. If indeed you have SOD, what are the treatments this doctor prefers to use?
Know that there are indeed some good, caring SOD doctors out there. Stay positive and never ever ever give up!