Mayo Appointments: Brain Tumor 48-hour Access Program

Posted by rosannen @rosannen, Apr 19, 2019

I know I read something about the Mayo Clinic having a 48 hour appointment window for people who have brain tumors. Can anyone give me more info on that?

I know someone who is seeing a neurologist at the Mayo and they will not refer her to a Neurosurgeon even though she was diagnosed with a Meningioma. They told her to follow up in a year but she wants to hear more about it since she really wasn’t given any info when she was there.

I’ve had a completely different experience than she has. I’m not sure why she is being denied a visit with a Neurosurgeon when she was told by a neurologist at the Mayo that she has a Meningioma. When I made an appointment at Mayo I was given an appointment for Neuro oncologist and a Neurosurgeon without any issue at all. In fact, they told me these are the people I need to see with this type of tumor.

Any suggestions for her or help would be appreciated.

Thanks.

I finally found it…never mind. 🙂

REPLY

Hi @rosannen, I'm glad you found the information. Allow me to post it here in case others are looking too.

At Mayo Clinic, we recognize that hearing you have a brain tumor is stressful and challenging. People have questions about the diagnosis, treatment options and what will happen next. Experts at the Mayo Clinic can help navigate your healthcare journey, answer your questions and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63 Be sure to mention the Brain Tumor 48-hour Access program.

Roseanne, am I understanding correctly that the Mayo neurologist won't refer to a Mayo neurosurgeon? That seems a bit odd to me, as they are likely working together as a team. Can you help me understand?

Liked by rosannen

REPLY

Hi Colleen, thank you for responding. I’ve met someone in a Meningioma forum on Facebook who has been to the Mayo in Rochester. She has seen a neurologist there and says that the results of the MRI showed a Meningioma and that the neurologist said come back in a year for another MRI. She doesn’t know where her tumor is or the size and wanted to see a neurosurgeon and asked for a referral but “supposedly” the neurologist won’t give her one.

After being to the Mayo, I also found this odd since when I called them they made appointments for me with a neuro-oncologist and neurosurgeon immediately (I’m extremely happy with them both btw). 2 weeks later I arrived and had both of my appointments and am very happy with how I have been treated and my plan for moving forward.

After reading her story on Facebook I mentioned my experience and told her to contact the neurosurgery dept. directly. I know whatever she was doing wasn’t getting her anywhere. Now I’m not sure if this is a miscommunication between her and her doctor or this is actually what is happening, But I was trying to help her so that she can see a neurosurgeon to get more information about her situation. She was very frustrated.

It sounds like today she spoke to someone in the neurosurgery department and they are going to get back to her the beginning of next week to help resolve this issue. She called around 4:30 today and it was too late to do anything. Hopefully she gets it resolved now.

I don’t know this woman personally, I just know what she posted on Facebook and how frustrated she was with the Mayo. I was so happy with my Mayo experience that I just wanted her to have the same experience that I did.

REPLY

It took me a few weeks to get in but I have found Mayo to be very disorganized and my NO has no bedside personality:(

REPLY

I’m so sorry to hear about your experience with the Neurology department. Please be assured that Mayo Clinic would want you to feel comfortable and confident about your care and your time at Mayo. I’d sincerely encourage you to call the Office of Patient Experience, and speak to someone about your concerns:

Contact information for the Office of Patient Experience at all Mayo Clinic locations:
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Staff are available to discuss comments or concerns you may have regarding your medical care. Your experience certainly sounds like something Mayo Clinic would want to act upon. Let me know if I can help.

REPLY
@rosannen

Hi Colleen, thank you for responding. I’ve met someone in a Meningioma forum on Facebook who has been to the Mayo in Rochester. She has seen a neurologist there and says that the results of the MRI showed a Meningioma and that the neurologist said come back in a year for another MRI. She doesn’t know where her tumor is or the size and wanted to see a neurosurgeon and asked for a referral but “supposedly” the neurologist won’t give her one.

After being to the Mayo, I also found this odd since when I called them they made appointments for me with a neuro-oncologist and neurosurgeon immediately (I’m extremely happy with them both btw). 2 weeks later I arrived and had both of my appointments and am very happy with how I have been treated and my plan for moving forward.

After reading her story on Facebook I mentioned my experience and told her to contact the neurosurgery dept. directly. I know whatever she was doing wasn’t getting her anywhere. Now I’m not sure if this is a miscommunication between her and her doctor or this is actually what is happening, But I was trying to help her so that she can see a neurosurgeon to get more information about her situation. She was very frustrated.

It sounds like today she spoke to someone in the neurosurgery department and they are going to get back to her the beginning of next week to help resolve this issue. She called around 4:30 today and it was too late to do anything. Hopefully she gets it resolved now.

I don’t know this woman personally, I just know what she posted on Facebook and how frustrated she was with the Mayo. I was so happy with my Mayo experience that I just wanted her to have the same experience that I did.

Jump to this post

Hi @rosannen
Thank you for reaching out to get more information on behalf of someone else. I'm glad that she is advocating for herself and has now connected with someone to help get explanations, and that she has a follow-up appointment with neurology.

Should she wish to talk about her experience with a patient advocate, I suggest she contact the Office of Patient experience. All the contact information can be found here: https://www.mayoclinic.org/about-mayo-clinic/patient-experience

REPLY

Hi Colleen I had surgery last Sept for an Acoustic Neurona and am still a patient of Dr Bendock. My 37 year old daughter was recently diagnosed with an elongated lipoma attached to her spine. She has Medicaid and can't work. Can you find out if she can be seen there?

REPLY
@rose4622

Hi Colleen I had surgery last Sept for an Acoustic Neurona and am still a patient of Dr Bendock. My 37 year old daughter was recently diagnosed with an elongated lipoma attached to her spine. She has Medicaid and can't work. Can you find out if she can be seen there?

Jump to this post

Hi @rose4622, I'm sorry to hear about your daughter. Please contact Mayo Clinic directly. They are best equipped to guide you on getting an appointment with which specialist, etc. Here are the contact numbers for all 3 locations: http://mayocl.in/1mtmR63

REPLY

Thank you Colleen young. We will call.

REPLY
@rose4622

Thank you Colleen young. We will call.

Jump to this post

Hi @rose4622
I hope your daughter was able to get treatment for the elongated lipoma attached to her spine. How is she feeling now?

REPLY
@ethanmcconkey

I’m so sorry to hear about your experience with the Neurology department. Please be assured that Mayo Clinic would want you to feel comfortable and confident about your care and your time at Mayo. I’d sincerely encourage you to call the Office of Patient Experience, and speak to someone about your concerns:

Contact information for the Office of Patient Experience at all Mayo Clinic locations:
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Staff are available to discuss comments or concerns you may have regarding your medical care. Your experience certainly sounds like something Mayo Clinic would want to act upon. Let me know if I can help.

Jump to this post

My name is Candace Jansen I'm currently residing in South Africa with my mother and 3 daughters. I am a single and at this present moment things are not going well. The reason why I say so is my family and myself just found out that my daughter Ashlynn has cancer on her spine as well as on her brain!
My daughters eyesight has also been affected!! For me as a parent to see my little girl suffer like this is heartbreaking because I feel helpless and powerless.

I would like it so much if my daughter could get treatment at you facility! I'm not working at the moment so it be costly for me to get there.. Please help me!!!

Kind regards
Candace Jansen

REPLY
@twinklez15

My name is Candace Jansen I'm currently residing in South Africa with my mother and 3 daughters. I am a single and at this present moment things are not going well. The reason why I say so is my family and myself just found out that my daughter Ashlynn has cancer on her spine as well as on her brain!
My daughters eyesight has also been affected!! For me as a parent to see my little girl suffer like this is heartbreaking because I feel helpless and powerless.

I would like it so much if my daughter could get treatment at you facility! I'm not working at the moment so it be costly for me to get there.. Please help me!!!

Kind regards
Candace Jansen

Jump to this post

Hi @twinklez15 Candace,
I'm so sorry to hear about your daughter. Children should not have to suffer. I know you would exchange places with her in a heartbeat if you could.

You can find out more information about possibly seeking care at Mayo Clinic by going to this website
International Patient Services https://www.mayoclinic.org/departments-centers/international/appointments
It also includes information about applying for financial assistance.

Do you know what type of brain or spinal cord tumor she has? Is she being seen by a specialist where you live?

REPLY
@colleenyoung

Hi @twinklez15 Candace,
I'm so sorry to hear about your daughter. Children should not have to suffer. I know you would exchange places with her in a heartbeat if you could.

You can find out more information about possibly seeking care at Mayo Clinic by going to this website
International Patient Services https://www.mayoclinic.org/departments-centers/international/appointments
It also includes information about applying for financial assistance.

Do you know what type of brain or spinal cord tumor she has? Is she being seen by a specialist where you live?

Jump to this post

It's a rare cancer the Medulloblastoma high risk.
I would really want my daughter to get treatment by you, tell me is there any way that you can help her? She has been to her specialist.

REPLY
@colleenyoung

Hi @twinklez15 Candace,
I'm so sorry to hear about your daughter. Children should not have to suffer. I know you would exchange places with her in a heartbeat if you could.

You can find out more information about possibly seeking care at Mayo Clinic by going to this website
International Patient Services https://www.mayoclinic.org/departments-centers/international/appointments
It also includes information about applying for financial assistance.

Do you know what type of brain or spinal cord tumor she has? Is she being seen by a specialist where you live?

Jump to this post

Tell me Colleen is there any chance that you can call me perhaps I called your clinic now and the consultant told me that they still closed now, as you know I'm from South Africa and our times are different when it's morning by us then it's night time by u guys!
If I can get my daughter to your clinic I will do it in a heartbeat, if by any chance you tell me that you going to make arrangements for her to come for treatment that side please!

REPLY
@twinklez15

Tell me Colleen is there any chance that you can call me perhaps I called your clinic now and the consultant told me that they still closed now, as you know I'm from South Africa and our times are different when it's morning by us then it's night time by u guys!
If I can get my daughter to your clinic I will do it in a heartbeat, if by any chance you tell me that you going to make arrangements for her to come for treatment that side please!

Jump to this post

Hi @twinklez15, yes, time zones can be a challenge for international patients. Fortunately there is also an online form you can fill out to make the request at any time of day. Here is the link https://www.mayoclinic.org/forms/international-patient-appointment

I encourage you to fill out the form. This is the most efficient and direct way to request an appointment. Alternatively, you can ask your daughter's specialist to submit a referral.

Liked by Lisa Lucier

REPLY
Please login or register to post a reply.