Evaluating Care Models at Top Hospitals to Fit an Individual Patient

Posted by mpflood7 @mpflood7, Sep 26, 2020

I have never been hospitalized so am a novice at choosing a hospital. That said, and especially as an out of state patient, how can a patient distinguish between top hospitals to identify which is best for his/her specific condition(s) … particularly insofar as the specific patient care model? (In a sense and by analogy to business terms, what are each top hospitals real, “competitive advantages”?) This is especially important in that I likely have a single chance to select a hospital and therefore must get it right. More specifically, I have systemic disorders that I’m told requires the “multispecialty, integrated, collaborative team” (MICT) approach offered by Mayo Clinic. The individual, “ad hoc” doctor approach has also not worked. How does this MICT approach actually work at Mayo and don’t all hospitals take this approach? (If so, how is it a true competitive advantage?) As to how the MICT approach works, does the team of specialists actually physically sit together and discuss the case? If so, are they trained well-enough to understand the other specialties? And wouldn’t it be more appropriate to directly admit the patient as an inpatient into a hospital so as to make a truly collaborative approach more effective? In practical terms, how can a “collaborative” approach even work if the patient is treated on an outpatient basis? Is it also a team of teams – in that is it a team of general internists who get together with a team of specialists (team of neurologists, hematologists, psychiatrists, etc) or simply a team of a singular internist, neurologist, hematologist, psychiatrist, etc? I want to say more on this but am quickly writing this now to get it started. Insights that even partially answer the (admittedly) many questions is appreciated. Hopefully, this can also be expanded upon. Thank you.

@merpreb

@mpflood7– Good morning and welcome to Mayo Clinic Connect. Wow, what a fantastic question! And one that everyone should ask. I know that it's scary to go to a hospital, even if it's your one-hundredth time, never mind your first. Consumer Reports have a yearly report of all the top hospitals and their specialties so you might want to check there.
https://www.consumerreports.org/hospitals/HowToChooseAHospital/
I think that when you need to choose a hospital for specialty care it's important to find a teaching hospital. Teaching hospitals develop new and better ways to care for patients through outcomes-based research and the development of new technologies. The downside to this is that you will most likely be working with students along with your doctors. The second thing to look for is location. I'm an hour, by train, to Mass General in New England so I go there. When I had my first lung operation my pulmonologist recommended a young doctor who studied at Harvard who practiced in a local hospital. After he left for MGH to be closer to his home I followed him for my follow-up CT scans and a need for a second lobectomy for my second cancer. He has been my lead doctor for 23 years next month. The difference between hospitals and patient care was incredible.

You are right that ad hoc care doesn't work with patients because there is no real coordinated teamwork and for great care, there needs to be a coordinated effort of care between doctors who do get together in some sort of committee meeting to decide what to present to the patient as their best recommendations for care and survival and life quality. I have an Oncologist who is in charge of my care, a surgeon (who, because of our long term relationship ok's everything lol), a radiologist oncologist, and more for other problems. But my care is essentially coordinated by one doctor.

I think that when insurance companies took over patient care inpatient collaborative care for diagnostic purposes flew out the window. Because doctors who work in the type of system are lined up to work with each other they are selected because of their understandings of each others specialty. I don't think that it would work otherwise, and it's one of the reasons that ad hoc care doesn't work.

When I made my decision to follow my doctor to MGH I made it knowing that it was the best care that I could get and that I could be an out of state patient because I had insurance that paid for it. Have you checked to see if your insurance covers out of state medical care?

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My name is Jennifer and I have just joined the Mayo Connect. I was first Diagnosed with gastroparesis in 2/19. Before that I had/have the following: SOUND SENSITIVITY, CANT TALK/CANT TALK LOUD, CANT SWALLOW WELL, HANDS AND FEET STAY COLD, TIGHTNESS IN RIGHT SIDE OF NECK/FACE, ARNOLD CHIARIA MALFORMATION, CONSTIPATION, SEVERE WEIGHT LOSS (over 30 lbs n a yr), BAIN PAIN (L4-S1), ARTHRITIS, SI DYSFUNCTION, RT ARM SURGERY AND PAIN AND NUMBNESS, SORES IN MOUTH (can’t think of word), DENTAL ISSUES. I could go on. I’ve had every blood test my PCP can think of. Been to multiple drs. Most recent news is a feeding tube. I know my body well enough to know that the drs are missing something. Not much support from family. Single mom with a 16 yr old daughter. Still barely holding down a job (been warned that my production is low and next step is written warning then termination). Clueless as to what to do or where to go😢

REPLY
@jabaird2002

My name is Jennifer and I have just joined the Mayo Connect. I was first Diagnosed with gastroparesis in 2/19. Before that I had/have the following: SOUND SENSITIVITY, CANT TALK/CANT TALK LOUD, CANT SWALLOW WELL, HANDS AND FEET STAY COLD, TIGHTNESS IN RIGHT SIDE OF NECK/FACE, ARNOLD CHIARIA MALFORMATION, CONSTIPATION, SEVERE WEIGHT LOSS (over 30 lbs n a yr), BAIN PAIN (L4-S1), ARTHRITIS, SI DYSFUNCTION, RT ARM SURGERY AND PAIN AND NUMBNESS, SORES IN MOUTH (can’t think of word), DENTAL ISSUES. I could go on. I’ve had every blood test my PCP can think of. Been to multiple drs. Most recent news is a feeding tube. I know my body well enough to know that the drs are missing something. Not much support from family. Single mom with a 16 yr old daughter. Still barely holding down a job (been warned that my production is low and next step is written warning then termination). Clueless as to what to do or where to go😢

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Hi @jabaird2002,
I hear you. You are at the end of your rope. I recommend that you follow the Digestive Health group here: https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

In particular this discussion may be relevant for you:
– Extreme weight loss, cannot eat. No diagnosis yet.: https://connect.mayoclinic.org/discussion/extreme-weight-loss/
Continue to ask questions and advocate for your care.

REPLY
@tdrell

Hi mpflood7…..first let me say that I am very impressed with your objective efforts to determine how to obtain quality /comprehensive care. I suspect with your inquisitive nature…..by asking questions …not assuming etc….you possibly would receive a safe level of care anywhere. The staff would realize you expect safe and thorough care….your “eyes are wide open.”
As a RN I have had an advantage over the years in trying to match medical situations that I /family/friends have had with the best provider. So I would say if you know anyone in medical field, pump their brains for input….but be sure you have confidence in their judgement. Also talk to people who you trust to see if they have recommendations. I once asked a radiologist tech who he would use with hand issue….a nurse on orthopedic floor and a PT person who they would go to for hip replacement.
Make full use of the internet….be wary of things saying AD….and too high up in Google …
Call the place….what does your intuition tell you of how they sound.
You mentioned you will have one shot at going to a place….that’s sorta hard I think…..to determine which route to take for my husband’s prostrate cancer, we checked out 4 places,4 different approaches, and chose the one that we were most comfortable with…and still are 16 years later.
With my diagnosis 4 years ago with NTM infection in lungs, I spent lots of time on google learning about the bacterium, read link to this Support Group from Mayo Clinic. Coincidently it mentioned that there was going to be a day Seminar on NTM infections for patients and families in Denver in a month at National Jewish Health. Fortunately my daughter had just moved there so I would not have expenses and stress of knowing no one in an unfamiliar city.
So I began the process of being a patient there and attended the workshop where I could hear/see their specialists. I began as a patient there 4 months later, was scheduled for a 14 day evaluation….have returned for annual check ups and another annual workshop.
I did see a local infectious disease Dr prior to my visit to NJH who based on one culture would have started me on the rigorous 3 antibiotic anti TB regime …NJH told me that their criteria are 2 positive cultures and Bronchiectasis on Chest CAT scan…none of which I had.
They told me this…that I did not need RX on 3rd day there….rather than make me wait the 14 days in suspense….very caring.
Their doctors spend time with their clients….our poor local drs are scheduled with a patient every 15 minutes or less.

You mentioned you would like being hospitalized while undergoing a work up….even before days of COVID….no…still too hazardous. ….and disruptive to your habits. At NJH as a new patient….at that time… you would be assigned a hospital room to use between appts for your 2 weeks there. Could even order up delicious meals ….no cost.
I loved reading their history….was astounded that they did not charge patients til 1968 .
I could go on and on…it reassures me that there is a place like this I could go to…hope you find one you will feel same way about.tdrell😀

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Thank you. My mother and grandmother were nurses, so I am a fan.

Regarding being assigned a hospital room, can you clarify? Do you mean you had regular access to a dedicated hospital room even as an outpatient?

REPLY
@merpreb

@mpflood7– Good morning and welcome to Mayo Clinic Connect. Wow, what a fantastic question! And one that everyone should ask. I know that it's scary to go to a hospital, even if it's your one-hundredth time, never mind your first. Consumer Reports have a yearly report of all the top hospitals and their specialties so you might want to check there.
https://www.consumerreports.org/hospitals/HowToChooseAHospital/
I think that when you need to choose a hospital for specialty care it's important to find a teaching hospital. Teaching hospitals develop new and better ways to care for patients through outcomes-based research and the development of new technologies. The downside to this is that you will most likely be working with students along with your doctors. The second thing to look for is location. I'm an hour, by train, to Mass General in New England so I go there. When I had my first lung operation my pulmonologist recommended a young doctor who studied at Harvard who practiced in a local hospital. After he left for MGH to be closer to his home I followed him for my follow-up CT scans and a need for a second lobectomy for my second cancer. He has been my lead doctor for 23 years next month. The difference between hospitals and patient care was incredible.

You are right that ad hoc care doesn't work with patients because there is no real coordinated teamwork and for great care, there needs to be a coordinated effort of care between doctors who do get together in some sort of committee meeting to decide what to present to the patient as their best recommendations for care and survival and life quality. I have an Oncologist who is in charge of my care, a surgeon (who, because of our long term relationship ok's everything lol), a radiologist oncologist, and more for other problems. But my care is essentially coordinated by one doctor.

I think that when insurance companies took over patient care inpatient collaborative care for diagnostic purposes flew out the window. Because doctors who work in the type of system are lined up to work with each other they are selected because of their understandings of each others specialty. I don't think that it would work otherwise, and it's one of the reasons that ad hoc care doesn't work.

When I made my decision to follow my doctor to MGH I made it knowing that it was the best care that I could get and that I could be an out of state patient because I had insurance that paid for it. Have you checked to see if your insurance covers out of state medical care?

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Thank you Merry. You sound very knowledgable and yes, my insurance covers out of state care. I didn’t think of Consumer Reports. Great suggestion. I also over-looked that Mayo would presumably have student doctors as guided by more seasoned doctors. To confirm though, is this the case at Mayo? I had been to teaching dental schools and actualy find them better. I would guess that the same would hold true with teaching hospitals – that is, because the students are being graded, they are more vigilent and thorough (unlike many doctors who have been in practice for a long time and become lazy) as well as supervising doctors who I again would guess would be more enthusiastic due to such positions attracting experienced doctors who enjoy helping doctors in training. All in all, the younger student doctor combined with the more experienced teaching doctor would seem to be a synergistic relationship. Is that your view as well?

REPLY
@jabaird2002

My name is Jennifer and I have just joined the Mayo Connect. I was first Diagnosed with gastroparesis in 2/19. Before that I had/have the following: SOUND SENSITIVITY, CANT TALK/CANT TALK LOUD, CANT SWALLOW WELL, HANDS AND FEET STAY COLD, TIGHTNESS IN RIGHT SIDE OF NECK/FACE, ARNOLD CHIARIA MALFORMATION, CONSTIPATION, SEVERE WEIGHT LOSS (over 30 lbs n a yr), BAIN PAIN (L4-S1), ARTHRITIS, SI DYSFUNCTION, RT ARM SURGERY AND PAIN AND NUMBNESS, SORES IN MOUTH (can’t think of word), DENTAL ISSUES. I could go on. I’ve had every blood test my PCP can think of. Been to multiple drs. Most recent news is a feeding tube. I know my body well enough to know that the drs are missing something. Not much support from family. Single mom with a 16 yr old daughter. Still barely holding down a job (been warned that my production is low and next step is written warning then termination). Clueless as to what to do or where to go😢

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Jennifer – I am sorry to hear of your health struggles. One thing you may want to do to protect and maintain your job is consult with a lawyer in employment and related law. As an example, I’m thinking specifically of the FMLA (Family and Medical Leave Act). If you cannot afford a lawyer, you may want to check your local Legal Aid office. Good luck!

REPLY
@mpflood7

Thank you. My mother and grandmother were nurses, so I am a fan.

Regarding being assigned a hospital room, can you clarify? Do you mean you had regular access to a dedicated hospital room even as an outpatient?

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Mpflood…nJh is mostly a Clinic…outpatient….with affiliations with hospitals. The building had a floor with another 15 hospital rooms…complete with beds TVs etc…so on the
Monday of my 14 days there…I was assigned a room to use 8am to 6pm…so inbetween appts I could rest…relax…watch tv…eat.
On my follow up annual appts…usually taking a day or two…not assigned a room. Tdrell

REPLY

@mpflood7 You've asked a great question, and you are already ahead because your medical providers have recommended Mayo for your needs. My first experience at Mayo was for spine surgery and after being refused by 5 spine surgeons, it took me 2 years to realize that I wasn't going to get surgical help locally, so I turned to Mayo. This is my experience of how medical should not be in comparison to the way it should be. I didn't know there was a better way until I came to Mayo.

At first, I had tried to stay close to home, and when that didn't work out, I consulted at a major university teaching hospital with a med school in the nearest city. I thought that the problem was because I also had thoracic outlet syndrome which created similar symptoms making it hard to figure out what symptoms could be spine related and which were TOS. I had already seen a specialist at this university facility for my TOS and had been a patient with him for ten years, so it made sense to me to consult there about my spine. I thought the spine and the thoracic surgeons would consult each other about my case, but it never happened. Each told me to see the other specialist, and the visit results were not sent to the other. When I had an MRI, those results were mistakenly sent to the wrong office (because there were both downtown and suburban offices for the doctor), and I would get to my appointment that I had waited 5 or 6 weeks for, and my results had not arrived, and the computer network was separate for downtown, so they could not lookup my records. This should not happen and it wasted my time.

In the first visit with the spine surgeon there, he missed part of the diagnosis because he told me that my cervical disc problem would cause arm and scapular pain, and that my reported leg pain was not related. He didn't consult other doctors about that. This was a error that I would find about 5 months later. He asked me to do an epidural injection as a diagnostic test to see if it would take away my pain symptoms. I didn't want a spine injection, but I did as requested because I thought it would lead to getting help. The injection took away all the pain I had everywhere temporarily. The surgeon never gave me an opinion about this, he just ignored the result. Later, this clue helped me find the reason why I had leg symptoms and how it related to the diagnosis of cervical stenosis of spinal cord compression in the spinal canal. Stenosis was evident on my MRI's, but the doctors could not connect my symptoms to the imaging, and because they couldn't explain it, I was refused help. I was put in the position trying to convince the doctor that my leg pain was connected to my spine issues and I knew that because I could turn my head and change the pain to turn it on or off with my head position. He didn't listen.

I was told to follow up in a few months and also to consult with the neurologist who I'd seen before. I had to wait 6 weeks for the steroid crystals to be absorbed from the spinal injection before a new MRI could be done. I was getting worse, and the neurologist ordered the MRI. I tried to consult with the surgeon about the new imaging, and his nurse refused to make an appointment for me. I had reported real symptoms of spinal cord compression to her which she didn't recognize, and her response was to tell me to see a doctor about it. The neurologist called another spine surgeon at that facility to see me about the MRI. His recommendation was to do more spine injections and to do nerve conduction tests. Just a few weeks later, I learned this other surgeon was leaving to take a job elsewhere.

One day I happened to call when the nurse was off, and another one made a followup appointment with the main surgeon. This was the last time I saw him. I had diagrammed my pain as it progressed over the few months since the spine injection and given this to the surgeon. I was relieved when he finally mentioned surgery, but he said he didn't know if it would make me better or worse. He commented that I had pain in every dermatome (all over my body) and that it could be from an inflammatory problem like MS, so my efforts backfired because he didn't understand what caused it. It wasn't long after this, that I had vertigo caused by the muscle spasms associated with the spine issues and I sent a message to the surgeon. The response came back from the nurse, that he would not offer surgery at this time and to stay in physical therapy. That's when I looked at Mayo surgeons and I read their medical literature that was available online. One of the papers mentioned leg pain in relation to cervical issues and "funicular pain". I looked up that term and found medical cases similar to mine, so I knew what the doctor had missed. I asked both the neurologist and the thoracic surgeon who knew my case to help me bring this to the attention of the dismissive surgeon, and neither would help me. That was a shock to me, but it seems that no one wants to point out a mistake to a highly respected leader. The best advice they gave me was to get another opinion, and I discussed Mayo with them. I wasted 6 months waiting for appointments and jumping through hoops only to come to a dead end and I was living with advancing disability and loosing the coordination of my arms.

This is the medical literature that changed my course and this type of spine symptoms was already known at Mayo which gave me hope that a surgeon would understand this and believe me.
https://www.ncbi.nlm.nih.gov/pubmed/20938789
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
I sent this literature in with my imaging and request to be seen at Mayo and was given an appointment. They scheduled a neurology consult that would lead to other testing first before the surgery consult. I was sent for blood tests, nerve conduction tests, and to testing to confirm thoracic outlet syndrome, and from that to a consult with a thoracic vascular surgeon to consider which of my issues of the spinal cord compression or the nerve and vascular compression from TOS was the greater of the issues. The TOS testing and consult was in the morning and on the same day as my spine consult. While I was at the neurosurgery spine consult, the surgeon's phone rang and it was the vascular surgeon calling with his opinion on my case. All of my testing at Mayo was done in just 3 days total in the same week, and I was offered surgery at the first appointment. That is how medicine should be, and everyone at Mayo came together efficiently to help me, and not only that, I was treated with kindness and respect. I didn't need to try to prove my case anymore or to beg for help. I was an artist who was loosing the coordination of her arms, and at Mayo, that mattered. The doctors at the other institution also knew this, but it didn't matter there.

Though all of this, I also looked at US News and World Report rankings, and Becker Spine Review. I did look at patient reviews, but I took them with a grain of salt. I looked up where surgeons were educated. I looked to see if they were leaders in their field and respected by their peers. I knew a lot about spine surgery because I had been watching online videos of surgeons presenting at conferences and reading literature and research and papers of any surgeon I would want to see. Hospitals also have rankings too, and some hospitals have lower success rates. One thing of concern is infection rates, and some hospitals are better than others. I learned to advocate for myself and ask questions, and I learned enough to know when I was getting good answers. Always ask and advocate for yourself. No one else can do that. I'm glad I didn't have surgery with a surgeon who didn't understand my case. He could have done the surgery, but why trust someone who doesn't understand and who doesn't really want you as a patient? I would have saved myself a lot of trouble if I had come to Mayo first.

My Mayo Patient story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

REPLY
@jenniferhunter

@mpflood7 You've asked a great question, and you are already ahead because your medical providers have recommended Mayo for your needs. My first experience at Mayo was for spine surgery and after being refused by 5 spine surgeons, it took me 2 years to realize that I wasn't going to get surgical help locally, so I turned to Mayo. This is my experience of how medical should not be in comparison to the way it should be. I didn't know there was a better way until I came to Mayo.

At first, I had tried to stay close to home, and when that didn't work out, I consulted at a major university teaching hospital with a med school in the nearest city. I thought that the problem was because I also had thoracic outlet syndrome which created similar symptoms making it hard to figure out what symptoms could be spine related and which were TOS. I had already seen a specialist at this university facility for my TOS and had been a patient with him for ten years, so it made sense to me to consult there about my spine. I thought the spine and the thoracic surgeons would consult each other about my case, but it never happened. Each told me to see the other specialist, and the visit results were not sent to the other. When I had an MRI, those results were mistakenly sent to the wrong office (because there were both downtown and suburban offices for the doctor), and I would get to my appointment that I had waited 5 or 6 weeks for, and my results had not arrived, and the computer network was separate for downtown, so they could not lookup my records. This should not happen and it wasted my time.

In the first visit with the spine surgeon there, he missed part of the diagnosis because he told me that my cervical disc problem would cause arm and scapular pain, and that my reported leg pain was not related. He didn't consult other doctors about that. This was a error that I would find about 5 months later. He asked me to do an epidural injection as a diagnostic test to see if it would take away my pain symptoms. I didn't want a spine injection, but I did as requested because I thought it would lead to getting help. The injection took away all the pain I had everywhere temporarily. The surgeon never gave me an opinion about this, he just ignored the result. Later, this clue helped me find the reason why I had leg symptoms and how it related to the diagnosis of cervical stenosis of spinal cord compression in the spinal canal. Stenosis was evident on my MRI's, but the doctors could not connect my symptoms to the imaging, and because they couldn't explain it, I was refused help. I was put in the position trying to convince the doctor that my leg pain was connected to my spine issues and I knew that because I could turn my head and change the pain to turn it on or off with my head position. He didn't listen.

I was told to follow up in a few months and also to consult with the neurologist who I'd seen before. I had to wait 6 weeks for the steroid crystals to be absorbed from the spinal injection before a new MRI could be done. I was getting worse, and the neurologist ordered the MRI. I tried to consult with the surgeon about the new imaging, and his nurse refused to make an appointment for me. I had reported real symptoms of spinal cord compression to her which she didn't recognize, and her response was to tell me to see a doctor about it. The neurologist called another spine surgeon at that facility to see me about the MRI. His recommendation was to do more spine injections and to do nerve conduction tests. Just a few weeks later, I learned this other surgeon was leaving to take a job elsewhere.

One day I happened to call when the nurse was off, and another one made a followup appointment with the main surgeon. This was the last time I saw him. I had diagrammed my pain as it progressed over the few months since the spine injection and given this to the surgeon. I was relieved when he finally mentioned surgery, but he said he didn't know if it would make me better or worse. He commented that I had pain in every dermatome (all over my body) and that it could be from an inflammatory problem like MS, so my efforts backfired because he didn't understand what caused it. It wasn't long after this, that I had vertigo caused by the muscle spasms associated with the spine issues and I sent a message to the surgeon. The response came back from the nurse, that he would not offer surgery at this time and to stay in physical therapy. That's when I looked at Mayo surgeons and I read their medical literature that was available online. One of the papers mentioned leg pain in relation to cervical issues and "funicular pain". I looked up that term and found medical cases similar to mine, so I knew what the doctor had missed. I asked both the neurologist and the thoracic surgeon who knew my case to help me bring this to the attention of the dismissive surgeon, and neither would help me. That was a shock to me, but it seems that no one wants to point out a mistake to a highly respected leader. The best advice they gave me was to get another opinion, and I discussed Mayo with them. I wasted 6 months waiting for appointments and jumping through hoops only to come to a dead end and I was living with advancing disability and loosing the coordination of my arms.

This is the medical literature that changed my course and this type of spine symptoms was already known at Mayo which gave me hope that a surgeon would understand this and believe me.
https://www.ncbi.nlm.nih.gov/pubmed/20938789
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
I sent this literature in with my imaging and request to be seen at Mayo and was given an appointment. They scheduled a neurology consult that would lead to other testing first before the surgery consult. I was sent for blood tests, nerve conduction tests, and to testing to confirm thoracic outlet syndrome, and from that to a consult with a thoracic vascular surgeon to consider which of my issues of the spinal cord compression or the nerve and vascular compression from TOS was the greater of the issues. The TOS testing and consult was in the morning and on the same day as my spine consult. While I was at the neurosurgery spine consult, the surgeon's phone rang and it was the vascular surgeon calling with his opinion on my case. All of my testing at Mayo was done in just 3 days total in the same week, and I was offered surgery at the first appointment. That is how medicine should be, and everyone at Mayo came together efficiently to help me, and not only that, I was treated with kindness and respect. I didn't need to try to prove my case anymore or to beg for help. I was an artist who was loosing the coordination of her arms, and at Mayo, that mattered. The doctors at the other institution also knew this, but it didn't matter there.

Though all of this, I also looked at US News and World Report rankings, and Becker Spine Review. I did look at patient reviews, but I took them with a grain of salt. I looked up where surgeons were educated. I looked to see if they were leaders in their field and respected by their peers. I knew a lot about spine surgery because I had been watching online videos of surgeons presenting at conferences and reading literature and research and papers of any surgeon I would want to see. Hospitals also have rankings too, and some hospitals have lower success rates. One thing of concern is infection rates, and some hospitals are better than others. I learned to advocate for myself and ask questions, and I learned enough to know when I was getting good answers. Always ask and advocate for yourself. No one else can do that. I'm glad I didn't have surgery with a surgeon who didn't understand my case. He could have done the surgery, but why trust someone who doesn't understand and who doesn't really want you as a patient? I would have saved myself a lot of trouble if I had come to Mayo first.

My Mayo Patient story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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jenniferhunter….wow….what you have gone thru!!! hope all is under control now…and stays that way. May l ask what city you came from??? Also what type of insurance you have? Tdrell

REPLY
@jenniferhunter

@mpflood7 You've asked a great question, and you are already ahead because your medical providers have recommended Mayo for your needs. My first experience at Mayo was for spine surgery and after being refused by 5 spine surgeons, it took me 2 years to realize that I wasn't going to get surgical help locally, so I turned to Mayo. This is my experience of how medical should not be in comparison to the way it should be. I didn't know there was a better way until I came to Mayo.

At first, I had tried to stay close to home, and when that didn't work out, I consulted at a major university teaching hospital with a med school in the nearest city. I thought that the problem was because I also had thoracic outlet syndrome which created similar symptoms making it hard to figure out what symptoms could be spine related and which were TOS. I had already seen a specialist at this university facility for my TOS and had been a patient with him for ten years, so it made sense to me to consult there about my spine. I thought the spine and the thoracic surgeons would consult each other about my case, but it never happened. Each told me to see the other specialist, and the visit results were not sent to the other. When I had an MRI, those results were mistakenly sent to the wrong office (because there were both downtown and suburban offices for the doctor), and I would get to my appointment that I had waited 5 or 6 weeks for, and my results had not arrived, and the computer network was separate for downtown, so they could not lookup my records. This should not happen and it wasted my time.

In the first visit with the spine surgeon there, he missed part of the diagnosis because he told me that my cervical disc problem would cause arm and scapular pain, and that my reported leg pain was not related. He didn't consult other doctors about that. This was a error that I would find about 5 months later. He asked me to do an epidural injection as a diagnostic test to see if it would take away my pain symptoms. I didn't want a spine injection, but I did as requested because I thought it would lead to getting help. The injection took away all the pain I had everywhere temporarily. The surgeon never gave me an opinion about this, he just ignored the result. Later, this clue helped me find the reason why I had leg symptoms and how it related to the diagnosis of cervical stenosis of spinal cord compression in the spinal canal. Stenosis was evident on my MRI's, but the doctors could not connect my symptoms to the imaging, and because they couldn't explain it, I was refused help. I was put in the position trying to convince the doctor that my leg pain was connected to my spine issues and I knew that because I could turn my head and change the pain to turn it on or off with my head position. He didn't listen.

I was told to follow up in a few months and also to consult with the neurologist who I'd seen before. I had to wait 6 weeks for the steroid crystals to be absorbed from the spinal injection before a new MRI could be done. I was getting worse, and the neurologist ordered the MRI. I tried to consult with the surgeon about the new imaging, and his nurse refused to make an appointment for me. I had reported real symptoms of spinal cord compression to her which she didn't recognize, and her response was to tell me to see a doctor about it. The neurologist called another spine surgeon at that facility to see me about the MRI. His recommendation was to do more spine injections and to do nerve conduction tests. Just a few weeks later, I learned this other surgeon was leaving to take a job elsewhere.

One day I happened to call when the nurse was off, and another one made a followup appointment with the main surgeon. This was the last time I saw him. I had diagrammed my pain as it progressed over the few months since the spine injection and given this to the surgeon. I was relieved when he finally mentioned surgery, but he said he didn't know if it would make me better or worse. He commented that I had pain in every dermatome (all over my body) and that it could be from an inflammatory problem like MS, so my efforts backfired because he didn't understand what caused it. It wasn't long after this, that I had vertigo caused by the muscle spasms associated with the spine issues and I sent a message to the surgeon. The response came back from the nurse, that he would not offer surgery at this time and to stay in physical therapy. That's when I looked at Mayo surgeons and I read their medical literature that was available online. One of the papers mentioned leg pain in relation to cervical issues and "funicular pain". I looked up that term and found medical cases similar to mine, so I knew what the doctor had missed. I asked both the neurologist and the thoracic surgeon who knew my case to help me bring this to the attention of the dismissive surgeon, and neither would help me. That was a shock to me, but it seems that no one wants to point out a mistake to a highly respected leader. The best advice they gave me was to get another opinion, and I discussed Mayo with them. I wasted 6 months waiting for appointments and jumping through hoops only to come to a dead end and I was living with advancing disability and loosing the coordination of my arms.

This is the medical literature that changed my course and this type of spine symptoms was already known at Mayo which gave me hope that a surgeon would understand this and believe me.
https://www.ncbi.nlm.nih.gov/pubmed/20938789
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
I sent this literature in with my imaging and request to be seen at Mayo and was given an appointment. They scheduled a neurology consult that would lead to other testing first before the surgery consult. I was sent for blood tests, nerve conduction tests, and to testing to confirm thoracic outlet syndrome, and from that to a consult with a thoracic vascular surgeon to consider which of my issues of the spinal cord compression or the nerve and vascular compression from TOS was the greater of the issues. The TOS testing and consult was in the morning and on the same day as my spine consult. While I was at the neurosurgery spine consult, the surgeon's phone rang and it was the vascular surgeon calling with his opinion on my case. All of my testing at Mayo was done in just 3 days total in the same week, and I was offered surgery at the first appointment. That is how medicine should be, and everyone at Mayo came together efficiently to help me, and not only that, I was treated with kindness and respect. I didn't need to try to prove my case anymore or to beg for help. I was an artist who was loosing the coordination of her arms, and at Mayo, that mattered. The doctors at the other institution also knew this, but it didn't matter there.

Though all of this, I also looked at US News and World Report rankings, and Becker Spine Review. I did look at patient reviews, but I took them with a grain of salt. I looked up where surgeons were educated. I looked to see if they were leaders in their field and respected by their peers. I knew a lot about spine surgery because I had been watching online videos of surgeons presenting at conferences and reading literature and research and papers of any surgeon I would want to see. Hospitals also have rankings too, and some hospitals have lower success rates. One thing of concern is infection rates, and some hospitals are better than others. I learned to advocate for myself and ask questions, and I learned enough to know when I was getting good answers. Always ask and advocate for yourself. No one else can do that. I'm glad I didn't have surgery with a surgeon who didn't understand my case. He could have done the surgery, but why trust someone who doesn't understand and who doesn't really want you as a patient? I would have saved myself a lot of trouble if I had come to Mayo first.

My Mayo Patient story
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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Hi Jennifer,
What you went thru before Mayo is called being on a medical merry-go-round.
Glad you got off the merry go round, got answers, and are feeling better.
How are you doing with your ankle?
Funcountess

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@tdrell

jenniferhunter….wow….what you have gone thru!!! hope all is under control now…and stays that way. May l ask what city you came from??? Also what type of insurance you have? Tdrell

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@tdrell Thank you, yes, my spine health is great since my Mayo surgery 4 years ago. My insurance was "in network" at all the places I consulted for my spine. I prefer not to name names or locations because I want to be able to be brutally honest in these discussions. I didn't make any public comments or review the prior surgeon, but I did send him a kind letter along with the medical literature I found in the spirit of sharing information. As you might expect, there was no response. His staff could have discarded it and not shared it and I'll never know. That doesn't matter because my Mayo neurosurgeon told me he will always be my doctor and that he will stay at Mayo until he retires, so there are perks to having a surgeon younger than yourself. If I need spine surgery again, I would only want to see my surgeon at Mayo because I respect his knowledge, expertise and talent. He was also very helpful to me in recommending an orthopedic trauma surgeon at Mayo after I broke my ankle 4 months ago and sent me to a surgeon he trusts for his own family. I had been asking around locally and had called a few surgeons, but some couldn't see me or would only see me in a downtown location with all the crazy traffic, covid risk, and I couldn't drive, and my husband wasn't good with aggressive traffic. I had to get an appointment so they could decide if they wanted to help and that makes no sense that I would need to supply imaging before they would agree to see me. I already had an emergency surgery while on a trip that cleaned the wound from the compound fracture and placed a fixator cage to stabilize my ankle that was screwed into my shin and heel. This provides a couple weeks to allow for swelling to decrease before bones are set with plates and screws, so this was perfectly obvious that I needed further surgical help. I did have the 2nd ankle surgery at Mayo and am currently rehabbing my leg. All I had to do was contact my spine surgeon, and he responded that he was sending my request to another surgeon who would reach out to me for an appointment, and they did within an hour. I had appointments right away for the surgery itself and to come 2 days earlier to be tested for Covid and get further imaging and have the surgical consult. That was so easy, no jumping through hoops (as if I could!) and I had another great surgeon. I think that the first doctor you see at Mayo is your contact for future visits and that they arrange other specialists for you. I also saw a pulmonologist on one of my visits, again recommended by my spine surgeon. It is wonderful to have that kind of relationship where all I have to do is ask, and I can get medical help.

One other consideration is that at many facilities, surgeons practice there, but they own their practices, so they own the risk of malpractice or negative reviews that could affect if their business is profitable. They want to cherry pick cases they know will have a good outcome because the success rate for specific surgeries is recorded for each surgeon and hospital. Insurance companies track this too. If you are the patient who comes in with a confusing case, or with other health problems that can affect recovery, it's easier to refuse an offer for surgery, or to treat symptoms to postpone surgery such as spinal injections in the case of spine surgery. At Mayo, everyone is an employee and not in private practice, so there is no incentive to do surgeries for extra profits, so the opinion there isn't colored by financial motives. Mayo is known for taking complex cases that others refuse. I am sure this was part of my problem with the surgeons who turned me down because they were afraid to ruin their reputation if my surgery wasn't successful, and because they didn't understand the complete problem, they backed out. They should have looked farther, but they didn't. There are lots of other patient dollars walking through the door and they didn't want to invest any more time. Some were doing 30 minute spine procedures in comparison to the 2 hour spine procedure at Mayo which for the surgeon was an hour and a half of his time for the same procedure. I would rather be the patient of a surgeon who isn't rushing through the job because he has ten patients on his assembly line.

As for your question about admitting patients so other specialties can also consult, I think insurance companies would frown on this. They are in the game for profit and can refuse claims that don't follow correct protocol. If there is a valid reason why a patient should be admitted to the hospital, that is different. I was in the hospital 2 days after my ankle fracture because I couldn't manage to navigate well enough with a walker or be able to go up and down stairs. I had to figure this out with the therapists while I was in extreme pain and so nauseous and dizzy from the pain medications. I did better on lower doses that were more frequent. The doctors need to know a patient can navigate safely at home after release. If I had been more functional, they would have released me after one night. The problem of being an outpatient and seeing multiple specialists is the waiting time in weeks and months to see those doctors. That is not an issue at Mayo because they have figured out how to do it efficiently and usually complete it within a week.

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@funcountess

Hi Jennifer,
What you went thru before Mayo is called being on a medical merry-go-round.
Glad you got off the merry go round, got answers, and are feeling better.
How are you doing with your ankle?
Funcountess

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@funcountess Thanks for asking. I am getting better every day making small gains on ankle and foot function so it is forward progress. My injured leg is smaller since I had not used the muscles for 3 months, so it takes time to get it all working better, and it fatigues quickly and hurts. I was encouraged to wean off the crutches and I walk with a limp. I have pain and tightness in my hip which makes me short strided because my leg doesn't want to go backward. When I step out of bed, my foot doesn't want to support my weight, but gets better after I walk on it. I do have limits on how far I can walk before I tire out, and the little bit around the house is not bad. I am taxing my abilities when I visit my horse in the distance I have to walk to get him, keep pace with him as I lead him to the barn to work on his hooves and back to his paddock. I couldn't take care for his feet for 3 months when I could not bear my own weight, so now I am treating a thrush infection for him. He will be fine, but it takes a few weeks of persistence to clear it up by cleaning his hooves, disinfecting, and packing a disinfecting mud into the cracks and crevices. After standing for awhile, I just have to get off my feet. That being said, I am doing pretty well.

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Hi again Jennifer,
You have some atrophy, which is normal after your ankle incident. It should go away after p.t. I have a very slight limp after my ankle/foot injury from years ago.
I get tired standing also, as we age, our ability to do what we once did goes bye bye.
You are such a wonderful painter/artist, please keep that skill going.
Your orthopedic problems are only one part of you, I hope you post more of your art work, as I’m sure it brings pleasure to whoever sees it.
As for horses, my speed is probably the miniature horses. Had a friend years ago who had a miniature horse who she would let in the house.
I found it interesting, as she said the horse was housebroken.
Could that be true?
The only thing I’d be willing to ride at my age is a 2 wheeler with training wheels.
Stay well,
Funcountess

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