Help for my wife? Rejected by Mayo

Posted by dizzyjw @dizzyjw, May 5 11:52pm

This is my first post and I don’t know where to go. My wife was rejected by Mayo today. She has been in severe pain for 4 months now under her rib cage. She’s had severe nausea as well and can only lay down flat so she’s been in the bed 95% of the last 4 months. We live in Northwest Arkansas and she has had endoscopy, colonoscopy, X-ray, CT, ultrasound, bravo PH, and more that I can’t think of right now. Her doctor seems dumbfounded so we tried to contact Mayo. She filled out everything and just got an email today rejecting her so now she’s devastated and we are at a loss. We are just really confused at what it takes to get seen by Mayo? Can we contact other Mayo clinics or are we out of luck? Any advise would be great.

Good morning! I am so sorry to hear of your wife's troubles and the situation you find yourselves in. May I ask – did your doctor provide a referral to Mayo? Did Mayo explain why your case was rejected?
Sending thoughts and prayers your way,
C

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Hello @dizzyjw and welcome to Mayo Clinic Connect. Your wife's situation sounds extremely painful and concerning. When you say her pain is under her rib cage, is it in the center or on the right/left side?

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@dizzyjw I’m sorry to hear that your wife did not get an appointment at Mayo Clinic. Sometimes departments at Mayo Clinic have more requests for appointments than available openings. There are a few options you may consider, such as:
– have her physician make a referral, possibly to a different department.
– make a self-referral or physician referral to a different Mayo Clinic location.

May I ask, did you request the appointment yourselves or did your wife's doctor make the referral. Which campus did you choose AZ, FL or MN? Which department?

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@danceswithhooves

Good morning! I am so sorry to hear of your wife's troubles and the situation you find yourselves in. May I ask – did your doctor provide a referral to Mayo? Did Mayo explain why your case was rejected?
Sending thoughts and prayers your way,
C

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Her doctor did not provide a referral, my wife called herself. Mayo didn’t really explain. Just a short email pretty much saying they have too many requests and to continue seeking treatment with her local doctor. Thank you so much for the thoughts and prayers

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@colleenyoung

@dizzyjw I’m sorry to hear that your wife did not get an appointment at Mayo Clinic. Sometimes departments at Mayo Clinic have more requests for appointments than available openings. There are a few options you may consider, such as:
– have her physician make a referral, possibly to a different department.
– make a self-referral or physician referral to a different Mayo Clinic location.

May I ask, did you request the appointment yourselves or did your wife's doctor make the referral. Which campus did you choose AZ, FL or MN? Which department?

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My wife made the request herself at the MN clinic. Thank you for the advice. We will look into some other clinics and a referral from a doctor.

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@amandajro

Hello @dizzyjw and welcome to Mayo Clinic Connect. Your wife's situation sounds extremely painful and concerning. When you say her pain is under her rib cage, is it in the center or on the right/left side?

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It’s kind of right center. She does have a history of endometriosis so we think it could be possible internal scarring but we aren’t sure. Tests didn’t pickup anything specific. She does have a slight hietal hernia as well but the doctor doesn’t think it should be causing that much pain.

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@dizzyjw

My wife made the request herself at the MN clinic. Thank you for the advice. We will look into some other clinics and a referral from a doctor.

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@dizzyjw I would definitely try having your wife's current doctor put in a referral. That is how I was able to be seen at Mayo (MN campus) when I was in a state much like what you are describing. That was a year before the pandemic started, but even then the volume of cases that are presented to Mayo's incredible institution were far more than they were able to handle, and had I not had the referral, I had been told by several (inside Mayo and other people with past personal experiences) that I likely would have been rejected.

Since then, and since the pandemic, the only people I know personally who were rejected by Mayo did not have a referral from a current practitioner, either. And as @colleenyoung suggests above, if your doctor does put in a referral that is initially rejected for whatever reason, please ask him/her to try to refer to a different department. My doctor at home at the time had referred me to a department that I knew wasn't where I needed to go, but the Mayo scheduler assured me that once I was "in," that doctor would likely schedule a series of workups/appointments for me that would ultimately get me where I needed to go – which indeed occurred, and I was seen in several different departments during my time there, ultimately finding help in a department far removed from where my "home" doctor thought I should be.

Continued prayers for you both! I realize how frustrating and exhausting the process is. But there is hope… and I'm glad you thought to pop in here to ask for advice – I hope some of what folks share with you get your wife relief!

God bless,
C

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@danceswithhooves

@dizzyjw I would definitely try having your wife's current doctor put in a referral. That is how I was able to be seen at Mayo (MN campus) when I was in a state much like what you are describing. That was a year before the pandemic started, but even then the volume of cases that are presented to Mayo's incredible institution were far more than they were able to handle, and had I not had the referral, I had been told by several (inside Mayo and other people with past personal experiences) that I likely would have been rejected.

Since then, and since the pandemic, the only people I know personally who were rejected by Mayo did not have a referral from a current practitioner, either. And as @colleenyoung suggests above, if your doctor does put in a referral that is initially rejected for whatever reason, please ask him/her to try to refer to a different department. My doctor at home at the time had referred me to a department that I knew wasn't where I needed to go, but the Mayo scheduler assured me that once I was "in," that doctor would likely schedule a series of workups/appointments for me that would ultimately get me where I needed to go – which indeed occurred, and I was seen in several different departments during my time there, ultimately finding help in a department far removed from where my "home" doctor thought I should be.

Continued prayers for you both! I realize how frustrating and exhausting the process is. But there is hope… and I'm glad you thought to pop in here to ask for advice – I hope some of what folks share with you get your wife relief!

God bless,
C

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Thank you so much for taking the time to respond. This information is very helpful. I told my wife this morning so we are going to see if her doctor will send the referral. It lifted her spirits this morning so thank you again

Josh

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@dizzyjw

Thank you so much for taking the time to respond. This information is very helpful. I told my wife this morning so we are going to see if her doctor will send the referral. It lifted her spirits this morning so thank you again

Josh

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@dizzyjw how great! Will you come back in and update us as you keep working toward an appointment?

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@dizzyjw Josh – great!!! Glad to hear it! Please do keep us updated if you would like to and are able!

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@dizzyjw Can you be more specific about where the pain under the ribs is for your wife? I frequently have pain and tightness around my rib cage because I have muscle tightness caused by thoracic outlet syndrome. What I might suggest to try to narrow down possible issues is to see a physical therapist who can possibly point her in the right direction as to the source and what medical specialist would be the best to see. The best PT for this would be one who also does myofascial release work because they can put hands on the body and feel where the fascia gets tight. We develop patterns of tightness because of many reasons, injuries, illness and infections, habits, and sedentary lives.

Also what kind of pain does she have… throbbing? aching? dull? electric shock or burning sensation? Does the pain travel to other places or stay in the same place? A neurologist can help assess if she had pain caused by a nerve entrapment and can do tests to find which nerve could be involved or if it could be caused be a disease or inflammatory process. I would recommend seeing a neurologist at a medical center that also treats Thoracic Outlet Syndrome or TOS because it is most often missed and misunderstood. Often Mayo's neurology doctors are in high demand because of neuropathy patients and it may be difficult to be seen because they don't have available time. You can see a neurologist somewhere else, and depending on what they find, that doctor could refer her to be seen at Mayo. Sometimes that makes a difference. If she has TOS, she could be referred to a TOS specialist at Mayo ( thoracic surgeon), and that specialist refers to other specialties inside Mayo depending on what is needed

My TOS was diagnosed by a neurologist long before I became a Mayo patient, and even so, other doctors I had didn't believe me because they thought TOS was rare. It isn't really, but few doctors really understand it. TOS affects the nerves and blood supply to the the arms and hands and I also get ribs that can twist (very painful) and tight pains near the sternum. I have muscle and fascia tightness between my ribs and pelvis near the respiratory diaphragm and that causes my lungs not to expand enough and traps phlegm which then causes infections if it isn't expelled. You can't assume any chest pain to be TOS because it can also be heart related, but if that and other issues have been ruled out, you need a doctor who understands physical problems like TOS that cause nerve entrapment. Physical therapy is my best way to treat TOS and with an expert PT who also does myofascial release. There is surgery for TOS, but since surgery creates scar tissue , it can make TOS worse. There are many different entrapment points in the chest that are TOS and sometimes even a cervical (Extra) rib is involved. I am an Mayo patient and did refer myself, but I had a spine problem that needed surgery so I had a specific defined need. When I was accepted as a patient, my first Mayo appointment was with a neurologist in the spine center hand picked by the neurosurgeon. The neurologist helped define my specific issues and they also evaluated my TOS to decide if that or my spine problem was the bigger problem causing my symptoms. I was sent to see a thoracic surgeon and had tests in their lab that measured blood pressure changes in my fingers with different arm positions that confirmed the TOS diagnosis. I think if your wife can come to Mayo with a better defined issue, she may have more success getting into see an appropriate specialist.

Here are some links for information and our myofascial release discussion. There is a provider search on the Myofacial release website. You can also ask me questions and I will try to help.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
http://mfrtherapists.com/

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