Can't get an appointment: Any tips on what to do?

If you would please enlighten us as to the criteria to actually get an appointment?

@wa34937 I'm just a patient and volunteer, so I don't know what the criteria is for patient selection in different departments, but I can tell you about how I got into Mayo as a patient. Connect is a patient forum and is not staffed by Mayo doctors, so the best we can do is share our own experiences. I hear from time to time that getting an appointment in neurology is difficult because there are so many people seeking those appointments with neuropathy. Sometimes neuropathy cannot be cured if something has caused permanent nerve damage.

My case was that I had spinal cord compression in my neck and it was causing pain all over my body, in my arms and legs which confused all the non-Mayo surgeons I saw locally. I tried for 2 years to get help and no surgeon would help me even though all of them could read the MRI and see my compressed spinal cord. I was always dismissed because it looked like I must have other big problems with my all over pain, and I had had some dizziness and vertigo and that can be a symptom of something serious with the brain.

In my case, vertigo was caused by muscle spasms moving my vertebrae around when I had no space left around my spinal cord. Right after surgeon #5 dismissed me, I looked at a profile for a Mayo surgeon and read his papers. One paper talked about leg pain from cervical spinal cord compression and also mentioned "funicular pain" so I figured this doctor would understand the pain I had. When I looked up "funicular pain", I found medical cases similar to mine and the indicator of funicular pain was that an epidural steroid spine injection would temporarily relieve the pain everywhere. That had been my experience, and surgeon #5 didn't pay attention to the results of that injection which was done as a diagnostic test. Perhaps it was meant to screen me out as a patent, and I think the doctor thought I would still have leg pains after the injection which would indicate it was a separate problem from the cervical spine problem, but when that didn't happen he ignored the findings.

So with this medical literature in hand, I wrote a letter to the Mayo surgeon and explained my symptoms and the whiplash that happened 20 years earlier, and that 5 local surgeons had turned me down over 2 years. My symptoms at that time included loosing the coordination of my arms and I am an artist, so that was a big problem to me. I sent my imaging, letter, and the medical literature in with my request. To do this, you must set up a temporary account and arrange to send in the imaging CDs by mail. I was told it would be about a 3 month wait to be seen in neurosurgery, but because of a cancellatoin, I got an appointment a month later and had to quickly get hotel reservations. I was offered surgery right away. I had a first day of testing, met the surgeon the second day, and I had to return for an MRI of the entire spine a couple days later.

What I think helped me get into Mayo was that no local surgeon would help me because of my unusual symptoms, and that I had been advocating for myself and trying to get treatment for 2 years. I also had done extensive physical therapy for my spine and for thoracic outlet syndrome prior to being seen at Mayo, and I had imaging and X-rays done during this time that supported my attempt in getting surgery for my condition. If I had been successful in getting interest from a local surgeon, I don't know if that would have changed my luck in getting into Mayo for another opinion.

Because I was an established patient and I had a good relationship with my Mayo neurosurgeon, I contacted him last year when I broke my ankle because I wanted a recommendation for a good surgeon to fix my ankle, and my neurosurgeon responded right away, and then the Mayo orthopedic trauma surgeon's PA contacted me an hour later and set up a first appointment and a surgery date. I sent in some screen shots of my X rays by e mail, and at that time, I had an external cage on my ankle to stabilize it for a few weeks while waiting for some of the swelling to calm down. My word of mouth and the recommendation from my spine surgeon were enough to warrant an appointment.

Hi Wa34937, the criteria for appointments at Mayo Clinic are complex and include many variables. Mayo Clinic has more requests for appointments than available openings. Appointments at Mayo Clinic are prioritized on the basis of medical need. Availability depends on the nature and urgency of the problem and Mayo Clinic's ability to help (as determined by a Mayo Clinic doctor). The complexity of the medical condition and, for less complex conditions, the availability of care closer to home are also factors.

I was told by a Mayo Rochester intake rep, in no
uncertain terms, that Mayo will not accept anyone who is covered by a Medicare
Advantage plan under any circumstance.
Does anyone know if this is true?

@motwally I have a Medicare Advantage plan and I'm a Rochester Mayo patient. It really depends on if your Medicare Advantage plan considers it out of network or not authorized.

"Mayo Clinic's campus in Rochester, Minnesota. Patients covered by Medicare Advantage HMO plans without authorization may not be seen. Patients cannot be seen on a self-pay basis." -- More about Medicare: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare

Thank you very much

I have had OCD, GAD, and Persistent Depressive Disorder for about 11 1/2 years at this point. I have tried many different treatments including the very typical treatments and the more specialized treatments. I have done CBT, ERP, Ketamine therapy, rTMS, mindfulness therapy, meditation, lots of different SSRI meds, brain mapping, immune system testing, possible infection angles, and other treatments. Due to my inability to find something that helps me, I was referred to the Mayo clinic. I was told it is where you go when nothing else seems to help or work. I was also told it is where you go when you want a full body approach and multiple specialty areas of treatment. This is important to me because the traditional focus on my mental health treatment hasn't worked. I was hoping to look at my elevated liver enzymes, my immune system, my inflammation problems, my fatigue problems, a possible autoimmune angle, a possible brain scanning to see if they can find a pattern to target or if I need some kind of brain device (like deep brain stimulation), my sleep problems etc. You get the point - I was hoping to address the multitude of problems I have throughout my body in the hopes that I would find some relief, especially from my mental health concerns. The problem is, I can't seem to get into the Mayo clinic to be seen. The general medicine people refuse to accept me and won't tell me why and the specialty doctors tell me I will need multiple specialties so I have to go through general medicine who again won't see me. I need help, I was hoping that the Mayo clinic would help, but they are making it aggressively difficult for me to be seen. One lady even said she didn't want to give "false hope" that they could do anything different. I wanted to tell her that they have provided the exact opposite of hope to me. I was told this is where you go for full body treatment and when you are looking for answers you can't find. Instead I have been extremely disappointed with the lack of compassion and help I have received as I have been shunted between multiple departments with no one willing to help me or give me any leads. I also have found no options for financial assistance as they do not take my CO medicaid. I am overall very disappointed in my treatment from the people I have talked to and the one time I pushed even a little to try and get answers I was immediately shut down and the woman was very rude. I would appreciate any advice.

Hi Searchingforhelp, welcome. I'm sorry to hear that your hope was taken away. You're right that Mayo Clinic is reknown as a place where people find answers, hope and healing. The next part of my response is not going to provide much comfort, I'm afraid.

It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Our physician experts have likely reviewed your case with colleagues. Their review led them to determine that Mayo Clinic cannot offer any further treatment for you at this time or care that is different from what you’re already receiving. The appointment denial is more likely an issue of capacity. Many of our departments, especially General Internal Medicine, receive more appointment requests than we have capacity to accept.

You'll notice that I moved your message to this existing discussion where fellow Connect members share tips on how to get an appointment at Mayo Clinic. You may wish to read through the past posts.

Thank you for your response, I appreciate it. It is disheartening to think they dont think there is anything else I can try as what I have tried has not worked and I was really hoping for an improvement in my health and a place that would look at full body approaches. I will look at the other posts and thanks again.

How long did it take most of you to become a patient? I feel like I’m dying and the process is taking forever and I feel like there will be no resolve. I have Hashimoto’s, Celiac, Raynaud’s, costochondritis, a lot of pain and misery. They recently found a nodule on my adrenal gland that I think is what’s got me feeling so miserable. Any tips on how to speed the process up?