Call for Mayo Clinic Leadership in Healthcare for Neuropathy

Posted by swanson2023 @swanson2023, Apr 2, 2023

Participating in the Mayo Connect Neuropathy Support Group conversations reveals the need and opportunity for leadership in healthcare.

Many patients are sharing their experiences, questions, and answers regarding having and treating neuropathy.

Mayo Clinic’s Opportunity

Provide leadership for connecting professional healthcare providers.

Includes all the types of doctors involved, therapists, medication and supplements providers, therapists, nutritionists, insurance providers.

Leadership for collaboration between all the healthcare providers in sharing causes and solutions. Much like the patients are doing on Mayo Connect.

Mayo Clinic starts connecting, leading, and facilitating healthcare providers, healthcare business executives, and others, all being professionals.
For all to learn from each other about preventing and treating PN - neuropathy, and improving serving their patients, clients, customers.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@swanson2023, you have correctly identified the Mayo Clinic effect. It is Mayo Clinic's mission to not only provide a multi-displinary team to a patient's care, but to also work collaboratively with professional colleagues, to advance research and to educate future generations of health care professionals. That is why our logo has 3 shields representing Patient Care, Research and Education.

Patient Care: Mayo Clinic doctors trained in brain and nervous system conditions (neurologists), nervous system surgery (neurosurgeons), and other areas collaborate to provide care. Mayo Clinic specialists treat more than 16,400 people with peripheral neuropathy each year.

Research: There are currently over 20 clinical trials with a focus on peripheral neuropathy being conducted with Mayo Clinic https://www.mayo.edu/research/clinical-trials/diseases-conditions/peripheral-neuropathy/

The neuroregeneration research at Mayo Clinic is at the forefront of healing the nervous system. One of the focus areas of the Regenerative Medicine Center at Mayo Clinic is neuroregeneration
https://www.mayo.edu/research/centers-programs/center-regenerative-biotherapeutics/focus-areas/neuroregeneration

Education: Mayo Clinic Proceedings is a professional medical journal where physicians share the latest information and continuing education in addition to our medical school.

Here's an example:
- Peripheral Neuropathy: A Practical Approach to Diagnosis and Symptom Management https://www.mayoclinicproceedings.org/article/S0025-6196(15)00378-X/fulltext

Rest assured medical professionals worldwide continue to focus on prevention and treatment of peripheral neuropathy. Quoting the opening line of the aforementioned article "Peripheral neuropathy is one of the most prevalent neurologic conditions encountered by physicians of all specialties." It cannot be ignored.

REPLY

Colleen
Grateful !
Based upon Mayo Clinic’s reputation and having Mayo Connect, I was hoping to hear from Mayo and what you shared about the Mayo Clinic.

Beginning of this year I reached out to the Mayo Clinic for help in advocating for and managing my PN - neuropathy at a Mayo Clinic.

While in a Mayo Clinic, Mayo Clinic people could facilitate doctors and the use of medicine, supplements, and nutrition in the treatment of my PN.

Mayo Clinic did not accept my interest - plea - and encouraged me to go to the providers in my area.

Providers in my area don’t function as you described Mayo Clinic does in your response to my post on Mayo Clinic leadership.

Grateful for any help in connecting me with and going to a Mayo Clinic?

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@swanson2023

Colleen
Grateful !
Based upon Mayo Clinic’s reputation and having Mayo Connect, I was hoping to hear from Mayo and what you shared about the Mayo Clinic.

Beginning of this year I reached out to the Mayo Clinic for help in advocating for and managing my PN - neuropathy at a Mayo Clinic.

While in a Mayo Clinic, Mayo Clinic people could facilitate doctors and the use of medicine, supplements, and nutrition in the treatment of my PN.

Mayo Clinic did not accept my interest - plea - and encouraged me to go to the providers in my area.

Providers in my area don’t function as you described Mayo Clinic does in your response to my post on Mayo Clinic leadership.

Grateful for any help in connecting me with and going to a Mayo Clinic?

Jump to this post

@swanson2023, there's the rub with peripheral neuropathy. Currently, treatments are limited. It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Our physician experts have likely reviewed your case with their colleagues. Their review led them to determine that Mayo Clinic cannot offer any further treatment for you at this time. It is Mayo Clinic's goal to provide the best care each patient needs, however they do not want to have you incur additional costs for evaluation or travel if Mayo does not feel it can offer care that is different from what you’re already receiving.

In part, that is why we host this online patient community to offer support and so that Mayo Clinic patients and non-Mayo patients can share what works for them, trials and tribulations, and encouragement of acceptance.

You just reminded me of an older discussion in the Neuropathy support group that I found helpful:
- Acceptance: Anyone have difficulty accepting new limitations daily? https://connect.mayoclinic.org/discussion/acceptance

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Colleen is 100% correct! Unfortunately we as chronic pain, neuropathy patients are all different. Every patient is unique is their presentation to the MD as well as multiple MDs. Every patient that goes to any neurologist is evaluated by multiple test, sex, age, symptoms, complete blood test as well as multiple genetics. It definitely is not a 1 cure for that patient. If there was 1 pill that would cure all patients it would be different. Unfortunately that’s not the case as all patients are different. The nervous system runs 100 miles and more throughout our bodies. And no 2 patients are the same! Hang in there and know things will get better….David

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@dabbs

Colleen is 100% correct! Unfortunately we as chronic pain, neuropathy patients are all different. Every patient is unique is their presentation to the MD as well as multiple MDs. Every patient that goes to any neurologist is evaluated by multiple test, sex, age, symptoms, complete blood test as well as multiple genetics. It definitely is not a 1 cure for that patient. If there was 1 pill that would cure all patients it would be different. Unfortunately that’s not the case as all patients are different. The nervous system runs 100 miles and more throughout our bodies. And no 2 patients are the same! Hang in there and know things will get better….David

Jump to this post

Yes - 100 %

Reveals the importance of our healthcare providers, in our communities at the front line of the healthcare system, who are to serve the health needs of each person, doing so through having knowledge and using it collaboratively communicating with one another in the best interest of each patient.

I have heard about, from retired and practicing physicians and nurses, and have personally felt our broken healthcare system not healing each patient.

The Mayo Way offers hope!!!

Please speak publicly about the need and the way to heal our healthcare system

Gratefully
Thank you Mayo Clinic

REPLY

Swanson, unfortunately I stand by what I wrote! There is no “magic” pill that will cure all. Yes Mayo is a nice facility with great outside resources, as well as teams that work together.
Unfortunately, Everyone is different, symptoms are different, genetics are different and the source of-the underlying problem is different. No 2 patients are the same!
I hope you find your issue as honestly it helps others. The Human body is complex but hopefully they find your Dx and are able to fix it…David

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Swanson, just to add, Most patients don’t have the correct insurance or money to afford Mayo. This is not against Mayo as they are one of the leading Healthcare systems in the US. You advised fixing the “system “. Unfortunately that’s impossible as all of them are fighting our Federal Government for funding. As multiple Congressmen/ Congresswomen are trying to take away benefits such as Medicare/ Medicaid/ Social Security ect..etc..I live 5-10 minutes from Mayo and can not afford the rates. Billy Graham, prior to his passing was a patient there. Excellent care, excellent staff but the average person can not afford it without selling their home…David

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David
Thanks for sharing!

Fighting in government is a root cause of our broken healthcare and education systems.

Harms children, students, and adults

This is one reason the Mayo Clinic providing leadership in collaboration in serving needs of people, including children, is critical to the health and future of children.

Thanks again
Steve Swanson

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Steve, unfortunately we honestly have so little control of health care. It’s a career where when you get into it, you find out it’s a business. We all got into it thinking the most important thing was helping others. Doesn’t take long to figure out what truly is important…David

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@colleenyoung

@swanson2023, there's the rub with peripheral neuropathy. Currently, treatments are limited. It sounds like you’ve taken the appropriate steps to seek care at Mayo Clinic. Our physician experts have likely reviewed your case with their colleagues. Their review led them to determine that Mayo Clinic cannot offer any further treatment for you at this time. It is Mayo Clinic's goal to provide the best care each patient needs, however they do not want to have you incur additional costs for evaluation or travel if Mayo does not feel it can offer care that is different from what you’re already receiving.

In part, that is why we host this online patient community to offer support and so that Mayo Clinic patients and non-Mayo patients can share what works for them, trials and tribulations, and encouragement of acceptance.

You just reminded me of an older discussion in the Neuropathy support group that I found helpful:
- Acceptance: Anyone have difficulty accepting new limitations daily? https://connect.mayoclinic.org/discussion/acceptance

Jump to this post

Colleen thank you.
The local providers near me do not collaboratively communicate and therefore should not be compared to those that do - Like at Mayo

When contacting Mayo requesting help - we talked insurance- mine ok. And I shared my need for help - not specifics. Please check out my two requests - name Steve Swanson

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