Neurology dept. not responding to messages re: MRI results.

I’m surprised the mayo portal doesn’t let you see your results on your own, as many portals do. I’m sure you will get advice from users of this platform. If none of the suggestions work, try finding your healthcare ombudsman

Here’s what I copied from an AI search engine

Healthcare ombudsmen work with consumers to resolve issues with health plans, providers, and facilities, and they often refer matters to appropriate regulatory agencies when needed. They also provide information and support on navigating healthcare options for insured and uninsured individuals

@upnort, Sorry to hear about your experience with the neurology department. I've always seen my test results within a short period of time on the patient portal. You mentioned sending a message through the portal to your neurologist and they were supposed to call you back but haven't done that yet. If it were me, I would keep sending messages through the portal as they will reach the neurologist's medical secretary or team member and hopefully if the neurologist is not able to call you, one of your care team members will follow up with more information. If that doesn't work, I would encourage you to call the Office of Patient Experience. Here is the toll free phone number:
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

Pretty much the way health care is these days, can’t get appointments, can’t get info, sick people waiting in waiting rooms for longer than they can manage. Ten years ago it wasn’t like this. We have more knowledge than ever before, but there is something wrong for sure. Hope you get some answers.

hi, I'm not a fellow patient, but you could contact the radiology department directly to receive copy of both a CD and a written report, which it is wise to have anyway. Sometime the report will appear on the patient portal under test results. Then, put your report on this site.
I can't explain the lack of response. But I am sorry you are experiencing this. You should keep calling Mayo everyday, until this is resolved.

Thank you all for your thoughtful and prompt replies. The problem is NOT getting the RESULTS of my MRI ( I got the results shortly after I had it completed). The problem is NOT getting my neurologist to set up a time to DISCUSS those results: what do they mean in terms of any future treatment, specific health care plans going forward with nuerology and Mayo Clinic. My symptoms continue their downward spiral without a PLAN OF ACTION. Where do we (doctor/patient) go from here? Has the lesion on the spine increased in size? If so, what do we do about it? Are there options available to me NOW that weren't there last year? What, specifically, did the MRI reveal about my current condition? The results do NOT address ANY of these isssues. Mayo Clinic: Arrive with Questions. Leave with Answers. Mmmmmm....

Those are all great questions @upnort. When I first read your discussion, I really wasn't sure what your main concern was. These questions spell it out specifically. If it were me, what you wrote in this post would be my next message to my care team through the patient portal. I'm tagging @jenniferhunter to see if she might have some suggestions relating to your diagnosis of progressive thoracic myelopathy.

I know my situation is not the same but I can relate to what you are feeling. I first came to Connect in 2016 after being diagnosed with idiopathic small fiber peripheral neuropathy and my neurologist told me what I didn't want to hear - there are no treatments (medications, surgeries, etc.) that will help with the numbness which was progressing at the time in my feet and legs. The numbness had been progressing starting in my toes for over 20 years before I decided to have tests done and see a neurologist because all of my primary care doctors told me the same thing when I asked if they find that I have nerve damage, what can be done? They all said nothing and I avoided having the tests to try and determine a cause. I was glad I found Connect and could learn what others with similar symptoms and diagnosis were doing to help with their condition.

@laura1970 Mayo portal does let you see your tests results

Have your Primary Care Physician look into it . Thru the portal message your primary .

@upnort I do understand your concerns. I am a spine surgery patient and I have learned a lot through my own advocacy and my science background. One way to find information is to look up the findings of the imaging report online and see if you find anything. There are videos online from spine conferences where cases are discussed and some can be accessed for free; others are limited to members of an organization. I learned a lot that way. If you look at your imaging, you can try to find the problem. Myelopathy on an MRI looks like a whitish area that is often diffuse in appearance. When you see that, it is because those nerve cells are missing. Generally speaking, the spinal cord is very limited in ability to heal, and myelopathy may be a permanent loss of function of that part of the spinal cord. There is always research being done, and there has been some success in recovery from serious spinal cord injuries done at Mayo. There has also been an apparatus that has been able to bridge the gap to send signals past a damaged area of the spinal cord to help a patient walk again.

I can’t answer what options may be available to you, but in serious cases, that is some of the work being done. Hopefully, I haven’t made you worry unnecessary. You do need an expert to interpret your results.

Can you share what the findings say on your report?

@jenniferhunter there is, in the coming months, going to be the first human spinal cord transplant in Israel. The animal studies were very promising. 54% of mice with total transaction of spinal cord were able to ambulate pot surgery. This new technology probably will only benefit the next generation but I’m so glad the research is being done