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averagejoanna
@averagejoanna

Posts: 3
Joined: Dec 20, 2018

If this case isn't acceped, what is!?

Posted by @averagejoanna, Dec 20, 2018

I made this account for my wife, I'm hoping it will result in a helpful community where she can find support. Lately, she's been breaking down in tears because we have nowhere else to turn for answers and all she wants is a simple "what is wrong with me" diagnosis. After 6 surgeries, 9 different doctors, three hospital networks, and at least 5 specialists she's been given no guidance and a few "well it really could be anything" answers. I can't watch her suffer anymore, it's tearing us apart. She is at wits end so I told her, maybe it's time we seek out the best of the best and go to Mayo clinic. The last two months she has needed a break from any more tests, but I asked her to just give it this one more shot… apply to Mayo clinic. If anyone can help you find out what is wrong, they can. She reluctantly filled out the application, received a call, completed the questionnaire and was starting to get some energy back to address these issues head on…… then she gets an email… DENIED from Mayo clinic and she's deflated again.

I've been reading all your forums, about how to get an appointment, about "calling the customer care line" and other such tips. I can tell you, listening to how disappointed she is… isn't going to help. She needs to see someone and if you don't believe Mayo is the best place… where else can address all these issues at once: 14 kidney stones (surgery), endometriosis (surgeries), ovarian cysts (surgery), possible Rheumatoid Arthritis, chronic migraines, allergy to elevated heart rate, low libido, joint pains, etc. There are more, but those are just the ones from the last 3 years. How do they deny someone like this?

With this post, I'm hoping someone in the community can offer us an alternative because she is about to give up on ever finding out what's wrong, and I can't let her lose hope. We've been to all the "top rated hospitals" in Chicago to no avail. Where else can we turn for answers?

This forum post is my last desperate attempt to get her the help she needs… Please don't tell us to call customer care if it won't result in an appointment.

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REPLY

I feel absolutely terrible about the issues your wife is dealing with. WHATEVER YOU DO DO NOT GIVE UP AND KEEP TRYING.
I to have had several surgeries and also denied being seen at Mayo after the first application . Please do not give up.
I did go through Internal Medicine and was accepted to see someone there. I was at my wits end and really wanted to find out what was wrong with me. I really was desperate and often depressed.
I started in Internal medicine but also went through (once seen at internal medicine) neurology, cardiology, psychiatric and orthopedic departments.
Please believe me when I say that all of the staff and care providers are second to none. They are very professional and in the end will tell you your wife's condition is even if it's not what you both want to hear.
I am happy that we spent the money to stay at hotels and travel to find out what my condition really is instead of having additional unnecessary surgeries.
Worst case (maybe best case) scenario is to go there and wait in the waiting area for someone to see you.
Good luck to you and your wife
Fred

@averagejoanna
I am sorry that your wife was denied and I know how frustrating and frightening that is. I was denied by 5 Chicago area surgeons for cervical stenosis with spinal cord compression over a period of 3 years, and I kept getting worse until a Mayo Surgeon helped me. My case was a bit unusual with my symptoms, and they didn't understand it, and no one wanted to take a chance on me. I could see the problem on my MRI and I knew that the position of my neck changed where my pain symptoms were, but they wouldn't listen. Doctors don't want to fail, and surely don't want a negative review written about them, so if they don't understand something, it's easier to pass on it. I can't speak for Mayo, but I do know they look at something and see if they can help. In my case, I found medical literature with cases similar to mine and I sent that in with my request. I think I can give you some resources in the northwest suburbs and will send you a private message.

I think a functional medicine or environmental allergy doctor would be good to consult about why the kidney stones are forming, and about possible inflammatory sources in the body. This type of doctor looks at the biochemistry of what happens. I was able to find a link about the foods that contribute to various types of kidney stones. You certainly can look at food as a possible cause of inflammation, allergy and kidney stones. I see an environmental allergist in the Chicago area who fine tunes my hormone levels and thyroid function, and does custom allergy testing. This type of doctor wants to prevent a problem, rather than treat symptoms. I have a lot of food allergies and gluten issues. Before I figured all that out, I had joint pain, and I have a long list of foods I have to avoid. Think of food as medicine and eating the foods that will heal instead of inflame your body. Giving up goodies seems like a curse until you try it and you find out that you can live pain free if you stop eating junk. I don't miss it because I know the consequences are bad and I'll feel awful, so saying no gets easier.

With multiple surgeries, your wife would have surgical scar tissue forming fascial restrictions internally. This can cause adhesions and compression of nerve and blood supplies, and restrict normal movement. It's something that doctors don't think about much on food and nutrition since they don't spend time on it in med schools. I see a physical therapist who does myofascial release work as part of my regular physical therapy and this can break fascial restrictions and get it all moving better. This is the "New" organ that supposedly was just discovered called the "Interstitium" that was in the news, but this treatment has been around at least 40 years. These issues can contribute to other problems in the body.

Foods and Kidney stones https://www.niddk.nih.gov/health-information/urologic-diseases/kidney-stones/eating-diet-nutrition
Myofascial Release https://myofascialrelease.com/
Academy of Environmental Medicine (physical finder) https://www.aaemonline.org/
Environmental Health Center in Dallas (pioneered the field & has extensive volumes for medical professionals) https://www.ehcd.com/

Thanks for the responses, they do help us cope with the rejection. We're going to try to find a local MAYO trained doctor in Illinois and see if he can refer us to Mayo after he/she TOO is baffled by what is going on. The rejection letter said that they don't feel they can offer any treatment that wasn't already provided… which I know is bogus because there has to be a link between all these and because we're constantly being given "odd" readings on the bloodwork with no real responses. I hear NorthShore is the place to go so I guess we will just start all over again there, being poked and prodded once more until we can finally get the right ears to hear us. Thanks for all your support, it's great to feel included but also slightly frustrating to know how many people suffer without receiving the care they need.

@averagejoanna

Thanks for the responses, they do help us cope with the rejection. We're going to try to find a local MAYO trained doctor in Illinois and see if he can refer us to Mayo after he/she TOO is baffled by what is going on. The rejection letter said that they don't feel they can offer any treatment that wasn't already provided… which I know is bogus because there has to be a link between all these and because we're constantly being given "odd" readings on the bloodwork with no real responses. I hear NorthShore is the place to go so I guess we will just start all over again there, being poked and prodded once more until we can finally get the right ears to hear us. Thanks for all your support, it's great to feel included but also slightly frustrating to know how many people suffer without receiving the care they need.

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@averagejoanna, I know that the rejection is hard. Mayo would not want you to incur additional costs for evaluation or travel if there is not care to offer that is different from what you’re already receiving. You mention NorthShore University HealthSystem. Did you know that NorthShore is part of the Mayo Clinic Care Network?

"The Mayo Clinic Care Network is a network of like-minded organizations that share a common commitment to improving the delivery of health care in their communities through high-quality, data-driven, evidence-based medical care.

Mayo Clinic is deeply committed to caring for all those who need hope and healing, but we recognize that not everyone wants or needs to travel to Mayo Clinic for care. Today, innovations in the delivery of care can ensure that people have access to Mayo Clinic medical expertise no matter where they live.

The Mayo Clinic Care Network uses technology and physician collaboration to deliver a full spectrum of medical expertise to communities across the country and throughout the world. Through the network, Mayo Clinic collaborates with local providers, complementing local expertise and providing additional peace of mind."

Here's more information about the Mayo Clinic Care Network: https://www.mayoclinic.org/about-mayo-clinic/care-network/about
NorthShore may be your best access to Mayo care. I hope this helps.

@colleenyoung

@averagejoanna, I know that the rejection is hard. Mayo would not want you to incur additional costs for evaluation or travel if there is not care to offer that is different from what you’re already receiving. You mention NorthShore University HealthSystem. Did you know that NorthShore is part of the Mayo Clinic Care Network?

"The Mayo Clinic Care Network is a network of like-minded organizations that share a common commitment to improving the delivery of health care in their communities through high-quality, data-driven, evidence-based medical care.

Mayo Clinic is deeply committed to caring for all those who need hope and healing, but we recognize that not everyone wants or needs to travel to Mayo Clinic for care. Today, innovations in the delivery of care can ensure that people have access to Mayo Clinic medical expertise no matter where they live.

The Mayo Clinic Care Network uses technology and physician collaboration to deliver a full spectrum of medical expertise to communities across the country and throughout the world. Through the network, Mayo Clinic collaborates with local providers, complementing local expertise and providing additional peace of mind."

Here's more information about the Mayo Clinic Care Network: https://www.mayoclinic.org/about-mayo-clinic/care-network/about
NorthShore may be your best access to Mayo care. I hope this helps.

Jump to this post

Hi Colleen, I'm sorry I simply can't believe that Mayo has nothing to offer her. That was what her rejection letter said, it's almost like saying: we're not even willing to try. All the "diagnosis" we've been given have been one at a time from an individual doctor vs from a team looking at the problem from a 360 degree view. That ALONE is something we haven't tried and, from what I understand, one of the greatest values that Mayo has to offer. I'm getting PMs now all the time from people telling me problems they have and referring me to holistic doctors, massage therapists, even one person sending me a Raki referral… not sure what that is but it sounds ridiculous.

Just last week she had mid-cycle bleeding, heavier than her normal periods for 4 days and is on yet another type of BC that doesn't appear to be helping, we've been back to the ER twice since my last post. She still has immense pain in her mid abdomen that we can't figure out the source. I know that with the right credentials and some focus, they can target the issues and help us. Not even being given the chance to come see you feels like we're not part of the elite who get the right care first. If you've seen any individual doctor recently, you know how busy they are and it's easy to see that they don't have time to consult with a community as you suggested. This, again, is why we feel the discussion among physicians is the key element to solving this case.

Yes I did know Northshore is part of mayo, that's why we picked it, hoping a connection to Mayo might help us with a doctor referral from a respected source. We're seeing one more doctor trained by Mayo next week, I'm assuming he will run the same tests and come to the same conclusions… this case is beyond one persons abilities. Hopefully THEN, we can get referred.

I'm sorry if my frustration is coming through, I simply can't understand how they refuse her even an initial appointment…. I'm willing to "incur additional costs for evaluation and travel" because I believe in the process. Even if they don't believe in us.

@averagejoanna

Hi Colleen, I'm sorry I simply can't believe that Mayo has nothing to offer her. That was what her rejection letter said, it's almost like saying: we're not even willing to try. All the "diagnosis" we've been given have been one at a time from an individual doctor vs from a team looking at the problem from a 360 degree view. That ALONE is something we haven't tried and, from what I understand, one of the greatest values that Mayo has to offer. I'm getting PMs now all the time from people telling me problems they have and referring me to holistic doctors, massage therapists, even one person sending me a Raki referral… not sure what that is but it sounds ridiculous.

Just last week she had mid-cycle bleeding, heavier than her normal periods for 4 days and is on yet another type of BC that doesn't appear to be helping, we've been back to the ER twice since my last post. She still has immense pain in her mid abdomen that we can't figure out the source. I know that with the right credentials and some focus, they can target the issues and help us. Not even being given the chance to come see you feels like we're not part of the elite who get the right care first. If you've seen any individual doctor recently, you know how busy they are and it's easy to see that they don't have time to consult with a community as you suggested. This, again, is why we feel the discussion among physicians is the key element to solving this case.

Yes I did know Northshore is part of mayo, that's why we picked it, hoping a connection to Mayo might help us with a doctor referral from a respected source. We're seeing one more doctor trained by Mayo next week, I'm assuming he will run the same tests and come to the same conclusions… this case is beyond one persons abilities. Hopefully THEN, we can get referred.

I'm sorry if my frustration is coming through, I simply can't understand how they refuse her even an initial appointment…. I'm willing to "incur additional costs for evaluation and travel" because I believe in the process. Even if they don't believe in us.

Jump to this post

@averagejoanna I am so sorry to hear all you have gone through. I know the frustration of not having a diagnosis, not knowing what is wrong with you. It took a year and a half for me to get a diagnosis of NASH cirrhosis, and then it was from a neurologist, not my PCP!
Beyond Connect I don't really know much about Mayo. My hospital became Mass General in Boston after having finally gotten my diagnosis locally. I hope if you can't get seen by a doctor at Mayo that you will be able to connect with a doctor who is part of a large medical center, preferably from what I know, a teaching hospital. Please keep us informed, we do care. I know how discouraged you and your wife must be. Don't give up, you will find help somewhere.
JK

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