Looking for care for multiple chronic and complex conditions

@mckinney3 I have heard that the more general groups are harder to get into at Mayo such as neurology because there are many patients with neuropathy asking for help. If your wife was to get into Mayo for a more specialized issue, then once a patient, her providers could refer her to other specialists. From my own experience, I came into Mayo as a surgical patient for spine surgery, and later came back to Mayo after I broke my ankle and needed surgery, and also to see a pulmonologist about asthma. In both instances, I asked my spine surgeon (who was my first contact Mayo doctor) and he referred me to the other specialists. When I was at Mayo about spine surgery, I was referred to a thoracic surgeon for evaluation because I also have thoracic outlet syndrome which creates overlapping symptoms with a spine problem, and I was referred for neurology testing related to spine surgery. Could your family physician possibly suggest a specialist direction that could be related to your quest as a good place to start?

In my case for spine surgery, I had been turned down 5 times by local spine surgeons for something that was easy surgery to fix, but because the local surgeons misunderstood connecting my symptoms to the problem on the imaging. Essentially, they missed the diagnosis, and my surgeon at Mayo understood that relationship. It probably helped me gain acceptance at Mayo because I was getting worse and no one would help.

One place you may want to try starting is with an environmental medicine or functional medicine doctor because they look at causes for problems instead of trying to treat symptoms with drugs. You could look at https://www.aaemonline.org/ where there is a practitioner search. That may help you determine a direction and path after which you could either work with the new doctor or approach Mayo at a more specialized level of entry. I know that is frustrating to ask for help and not receive it. I went through that with the 5 surgeons who would not help me. Doctors need to see a problem they recognize and can fix to become interested in helping. They don't want to fail or tell you they don't have an answer. I can tell you, Mayo is a wonderful place with compassionate doctors. I have had 3 surgeries there and was very well taken care of each time. My recoveries from surgery have been good too. I didn't know it could be like that in medicine.

Hi @mckinney3, I'm sorry that you and your wife are not finding getting the care you've previously experienced at Mayo Clinic and have rightfully come to expect. Can you help me to understand the situation a bit more?

Your wife has received great coordinated care in a particular department for a specific condition. You would like to now seek care in the General Internal Medicine department. Do I have that right so far?

Because General Internal Medicine is not accepting new patients at this time, it was suggested that you seek an appointment with Mayo Clinic's Complex Care Program. Here is more information about
- Mayo Clinic Complex Care Program https://www.mayoclinic.org/complex-care-program

Your initial contact with complex care has not yet led to an appointment. Now you're looking for tips of where to turn to next. Correct?

If I follow things correctly, I might suggest:
1. Follow up with Complex Care. Persist and advocate for an appointment.
2. Post a query on the patient portal to your wife's original physician's department at Mayo Clinic to ask for a referral.

May I ask at which Mayo Clinic location your wife receives care?

1. "Your wife has received great coordinated care in a particular department for a specific condition. You would like to now seek care in the General Internal Medicine department. Do I have that right so far?"

My wife sought a second opinion at Mayo for a recommendation from a South Carolina gastroenterologist. The first opinion was from a surgeon in my hometown that did not feel surgery was needed and that he disagreed with the original diagnosis that she have gastrointestinal re-sectioning surgery. The gastroenterologist wanted a second opinion. Long story but she met with the gastro-surgeon group team at Mayo and they were in agreement that her condition really wasn't diagnosed correctly and that they agreed with the first surgeon's opinion that a different action was more in order. This saved a LOT of unnecessary and invasive surgery.

2. "Because General Internal Medicine is not accepting new patients at this time, it was suggested that you seek an appointment with Mayo Clinic's Complex Care Program. Here is more information about
– Mayo Clinic Complex Care Program https://www.mayoclinic.org/complex-care-program"

One of my wife's specialists agreed that her set of symptoms was out of his wheelhouse. He agreed that she had ridden the medical-merry-go-round too many times and that a collaborative diagnosis was needed to get to the root of her chronic condition. He agreed to submit a referral to Mayo but wanted more specifics as to the group that I thought I had read about. I started at the main switchboard and was directed to another department. That department felt I should contact the General Internal Medicine department and I was put in touch with someone in that group. That was when I learned that the service we are seeking were no longer available eventhough mentioned on the Mayo website. - maybe I should check back in several months and see if anything had changed but more than likely diagnostic services that she needed may not ever be available.

I was directed to a person in the Complex Care Program as maybe they could help but had to leave a message. I will be patient as that only occurred today. In the mean time, I visited the same link that you mentioned. It concerns me that the site seems to address professional medical practices as a way to enable them to operate more efficiently as getting to root cause is accomplished faster than just stumbling around. From the site, "If your employees or members of your medical plan are experiencing fragmented care, ineffective treatments, potential misdiagnoses or difficulty accessing specialized care for complex conditions, Mayo Clinic can help."

We are not an employer or administrators of a medical plan but just individuals trying to find our way. We respect Mayo and have made the 10 hour journey to Florida for her first positive encounter. That has led us to believe that Mayo has the "fire power" to make a diagnosis from which a treatment plan could be constructed. Accessing those tools seems to be beyond our abilities. Any help in finding the correct path will be greatly appreciated.

Mary & Dan in South Carolina

Tank your taking the time to write your generous response. My wife was accepted for a specific issue at Mayo in Florida in September. That was a successful 10 hour trip.

I looked thru the site you recommended but very few physicians are listed within a reasonable distance. We feel if we are spending the time and energy we need a resource that provides a multiple disciplined approach.

we hope you are still doing well after your procedures!

Dan, you're right. Mayo Clinic Complex Care Program is a program for employers, organizations and insurers who wish to offer Mayo Clinic care to their members. I had misinterpreted your message thinking that you qualified for the program through your insurance or other membership.

I remain confident that Mayo Clinic's comprehensive and coordinated care approach is what you are looking for. As a Mayo Clinic patient, your wife should have access to that care. Possibly through the department where she has already been seen - GI.

Fellow members @fourof5zs and @ess77 may have further thoughts about Mayo Clinic Florida.

@mckinney3 Thank you. Yes, I have done well since my surgical procedures. The ankle was much more troublesome than the cervical spine surgery. I just think it takes a very long time to regain strength after a serious fracture and the muscle atrophy that goes along with the healing and then bearing weight on it. I still think I am progressing slowly, and it may take a few years to reach maximum healing and probably will never be the same as before the injury. Compared to the ankle, spine surgery was easy for me anyway! You might be interested in my Mayo Clinic story.
https://newsnetwork.mayoclinic.org/discussion/using-the-art-of-medicine-to-overcome-fear-of-surgery/

I agree with Colleen to keep trying for a referral through your first doctor from Mayo.