Appointment Reschedule

Posted by cmackia2020 @cmackia2020, Aug 21, 2021

My mom had a slew of appointments set for September at Mayo in Rochester and canceled them due to having sinus surgery on 8/16 as she was in so much pain and couldn’t wait any longer. The surgery hasn’t helped and I want to drive her up to Rochester ASAP to start with a team of doctors as this is more than Sephnoid Sinusitis. I’m seeking a neurosurgeon team as my mom has been dealing with brain issues for 30 years and her mom died from glycoblastoma grade 4 cancer at the same age my mom is now in 1990. There are other pressing issues I’d like looked at as well. What can I do to get her appointments rescheduled?

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@cmackia2020 Can you explain a bit more about your mom's condition? Was she supposed to have sinus surgery at Mayo and that was cancelled to take a surgery sooner somewhere else? Are you able to reach out to one of the Mayo doctors that were previously scheduled? Once a patient is seen at Mayo, they will refer them to other Mayo specialists as needed depending on what they find. I have heard that there are many patients seeking to be seen in neurology and that it is difficult to get an appointment. Is your mom having symptoms or is there any imaging suggesting that she should be seen by a neurosurgeon? I am a Mayo spine surgery patient, so my acceptance as a patient started with the neurosurgeon who reviewed my case and imaging. He then referred me to a selected neurologist to begin my testing at Mayo and once that was complete, I had my consult with the neurosurgeon. If she has a specific brain related diagnosis, that might be a reason to ask to consult a neurosurgeon rather than a neurologist.

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@jenniferhunter

@cmackia2020 Can you explain a bit more about your mom's condition? Was she supposed to have sinus surgery at Mayo and that was cancelled to take a surgery sooner somewhere else? Are you able to reach out to one of the Mayo doctors that were previously scheduled? Once a patient is seen at Mayo, they will refer them to other Mayo specialists as needed depending on what they find. I have heard that there are many patients seeking to be seen in neurology and that it is difficult to get an appointment. Is your mom having symptoms or is there any imaging suggesting that she should be seen by a neurosurgeon? I am a Mayo spine surgery patient, so my acceptance as a patient started with the neurosurgeon who reviewed my case and imaging. He then referred me to a selected neurologist to begin my testing at Mayo and once that was complete, I had my consult with the neurosurgeon. If she has a specific brain related diagnosis, that might be a reason to ask to consult a neurosurgeon rather than a neurologist.

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She was not going to have surgery at Mayo. It was initial testing to see what the course of action would be. She has had migraines for 30+ years; constant pneumonia since 2019; esophageal issues (endoscopy done in July 2021 found kink in esophagus). The sinus surgery was to go near the frontal lobes of her brain to break up 30+ years of crusted matter and blood clotting. This was not done from what I can tell due to her pain in the brain not lessening. What she describes it as is a knife being jabbed in her ears. Brain floating. No relief with OxyContin or Hydrocodone prescribed from the surgeon. No relief from prescribed Sumatriptan or Fieoricet. Nothing works. Furthermore, it radiates down into the neck and spine. I’m very scared as to what is going on and had hope that the surgery would at least ease the pain on her brain. It hasn’t. Therefore, I’m wanting to make the 15hr drive up to Mayo in Rochester as I know what y’all can do. I’ve seen it with my fiancé’s sons girlfriend’s stepmother who is getting exceptional care right now there.

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@cmackia2020

She was not going to have surgery at Mayo. It was initial testing to see what the course of action would be. She has had migraines for 30+ years; constant pneumonia since 2019; esophageal issues (endoscopy done in July 2021 found kink in esophagus). The sinus surgery was to go near the frontal lobes of her brain to break up 30+ years of crusted matter and blood clotting. This was not done from what I can tell due to her pain in the brain not lessening. What she describes it as is a knife being jabbed in her ears. Brain floating. No relief with OxyContin or Hydrocodone prescribed from the surgeon. No relief from prescribed Sumatriptan or Fieoricet. Nothing works. Furthermore, it radiates down into the neck and spine. I’m very scared as to what is going on and had hope that the surgery would at least ease the pain on her brain. It hasn’t. Therefore, I’m wanting to make the 15hr drive up to Mayo in Rochester as I know what y’all can do. I’ve seen it with my fiancé’s sons girlfriend’s stepmother who is getting exceptional care right now there.

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@cmackia2020 I understand your concerns. Does your mom have any known spine issues? The reason I ask this is because you stated she has had migraines for years, and the way you described the pain going down her spine. I am a spine surgery patient and had a cervical spine fusion 5 years ago. I was getting neck muscle spasms that rotated my vertebrae or tilted them independently which caused headaches on the back of my head and vertigo where I got dizzy. My physical therapist was able to realign everything and stop those headaches until the next spasm happened. After my spine surgery, things stabilized, so this stopped happening. I used to get pain in my ears, tingling in my face and jaw pain when my neck and spine were out of alignment. Sometimes there are overlapping symptoms that can be different problems. I myself have breathing issues because of thoracic outlet syndrome that prevents my chest from fully expanding on one side, and I have to be vigilant about keeping my allergies and asthma under control so it doesn't progress to a lung infection. That is a physical problem that work on with a physical therapist who does myofascial release to get the chest wall moving better. If it doesn't move properly, it traps phlegm which then turns into an infection if it goes too long. When fascia gets tight from injury or inflammation, it can prevent normal body alignment. The GI tract is supported by fascia that connects it to the rest of the body, and it is conceivable that tight fascia could pull on an organ.

Here is our discussion on MFR therapy. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Everyone here on Connect is a patient of family or friend of a patient and not a medical professional, so no one can give you a diagnosis. Here patients share and learn from each other and offer support. If you wanted to try to stay closer to home, there is a Mayo Clinic Care Network where other hospitals have affiliations with Mayo and their specialists can consult with specialists at Mayo. It does seem like a second opinion would be a good idea. I don't know what recovery from sinus surgery would be like, so I wouldn't know if her symptoms there were normal and I wouldn't be able to form an opinion about if the surgery was done properly. You need a specialist for that.

You can find the Mayo Clinic Care Network hospitals at this link.
https://www.mayoclinic.org/about-mayo-clinic/care-network/members

If you decide you would prefer to seek care at any of the 3 main Mayo Campuses, you may contact them a this link.
http://mayocl.in/1mtmR63

Since you already have made contact with Mayo and probably have a patient account number, you may want to try calling and see if you can reschedule your previously scheduled appointments. My care has also been exceptional at Mayo in Rochester for spine surgery and ankle surgery for a fracture.

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cmackia2020 @cmackia2020 , I would suggest you call Mayo Rochester central appointment number first thing Monday and ask about getting appointments rescheduled. 507-538-3270, 7 a.m. to 6 p.m. CST.

Seeing you had appointments scheduled at one time, they should be able to look up what was scheduled and try to get rescheduled. Hopefully it will not be a long wait, but that will depend on available openings.

Did your mom (you) create a Mayo portal sign on? I am not sure if there is anything you can do to reschedule a cancelled appointment online.

Do you have a printout of her original appointment schedule? If so on last page, there might be phone numbers for specific departments. But if have appointments in multiple areas, the main appointment desk might be best option because of need to coordinate multiple areas.

Good luck,
Laurie

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She does have her Mayo number and have a call scheduled for 1015am tomorrow. Crossing my fingers they can get her in quick.

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