Matthew74
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I recently visited the Mayo Clinic in Rochester, MN and wanted to share my experience for the benefit of others. It is mostly concerned with the Mayo vs. other hospitals I have been to, but will be of interest to anyone visiting a research / teaching hospital, or epilepsy center for the first time
The first posting is a description of my experience, to skip to the conclusions, click here.
About me: I had my first seizure at 9, and then a few more, until at 11 my parents took me to Children's Hospital in Pittsburgh, where it was discovered that I had a brain tumor, and then to MD Anderson in Houston. My parents, especially my dad who had a serious chronic illness, didn't fool around and got me the best care. At first they thought I had cancer, but it turned out this was not the case. The only problem was that I didn't exactly get treated as an epilepsy patient. Over my life I saw a lot of good doctors at a number of world class hospitals. However, for one reason or another not much was done besides medicate me, they didn't look too closely into my problems, and I didn't get the kind of ongoing care that I should have had. For most of that time it didn't matter, because I was fairly well. About 15 years ago things started getting worse, and about ten years ago they got much worse. Again, I got some excellent care, but not the continuing care that I needed. That changed when I moved to Minnesota and ended up on Medicaid. It turns out that the local hospital here in Red Wing, MN is a Mayo Clinic hospital, and it was easy to get an appointment at the Mayo Clinic in Rochester. The opportunity was huge for me.
Things were not going well for me with my recent move from Virginia and I was depressed out of my mind. I was alone. It got so bad that I realized I needed to go to the hospital, even without insurance. I skipped the emergency room, went to make an appointment with a neurologist, and asked if a psychiatrist was available. There weren't any doctors available so I saw a Physician's Assistant. She helped me out, and then scheduled for someone call me to make a neurology appointment in Rochester. I then saw a social worker, who directed me to someone who helped me apply for Medical Assistance (Medicaid). It came through right away. I got an appointment in Rochester in just a few weeks.
I was uncomfortable because the appointment was made with an intern (a doctor who is studying to become a specialist), rather than with one of their regular staff, and there were no other arrangements made. This really bothered me because I needed an experienced epileptologist and wanted a complete work up. They said I should be ready to stay 5-7 days. I found a cheap way to get there and a free place to stay in a house run by the Greek Orthodox Church.
There are two campuses, about a mile apart. All my appointments were on the main campus, but I did visit St. Mary's campus briefly.
My first appointment was on Thursday at 7 something in the morning. The first thing I noticed was how nice the place was, it was more like a resort or hotel lobby than a hospital. I forgot my paper with the appointment information, so I went to the main entrance, waited in line a few minutes, told them who I was, gave them some forms they had sent me to fill out, showed them my medicaid card, and they printed out a great schedule of my whole day.
First I went to neurology. Everything is easy to find, and if you get confused there are very capable people to help you everywhere. I went to the main desk, and gave them a huge stack of records, with my MRI and EEG cds. I had prepared them by getting everything copied, and put in order in a stack without staples. I also included a very long summary including specific details about why I was there, what I hoped to do, and what my goals were. I gave very detailed descriptions of my seizures, and a whole medical history compiled from the records. I have never done that before and it worked out well. I feel like I can never communicate in a doctor's office, so I just wrote answers to all the questions I knew they would ask.
All the departments run the same way. You go to the desk indicated on your schedule. I never had to wait more than a few minutes, although it was busier around noon. You check in and they give you a beeper. You then have to stay in the waiting area, which is always comfortable. Your appointment is on time, or even early if they are free. No waiting around for hours.
A nurse or physician's assistant took my vitals and some info. The examination rooms are comfortable, well maintained, and all have a cushioned bench so several people can sit there. I had to wait in the room for a while because I had given them a lot of records for them to look through. I saw the doctor who was the intern, Dr. Kelly. She was great. She took my history and asked me some questions, maybe half an hour or more. Then she went to get her supervisor, a staff epileptologist, Dr. Britton. I waited in the room there for a while, while they discussed my case. I liked Dr. Britton. He's not warm and fuzzy, but he takes you very seriously. I told him that I was open to anything, but wanted to try a diet first. We talked about the options and my meds. We agreed to a plan of action. He decided not to take me off my meds on VEEG (much to my surprise), unless we looked more into surgery. He took my thoughts about the meds very seriously. He decided not to do anything with the meds until I had been on the diet for a couple months, so that we could see how well it was working, and not get it confused with any changes in the meds. By the time I left neurology I had a whole new schedule, including appointments the following Wednesday, and a sleep consultation the week after that.
The first test was a EKG (ECG), which I thought was odd, but I did complain about my heart beating fast. They took me back into a little changing room, had me take my shirt off, I left everything there and took the key. They laid me down, put the leads on, and it was done in like a minute.
Then I went to EEG. It was the most thorough examination I have had. They hooked me up, had me look at funky pictures, had me hyperventilate for several minutes, and did a lot with the lights. She was the first EEG tech to ask me what kind of seizures I had, and she wanted very specific details. She wanted to know so that she knew what to look for. She answered some questions I had. (I had looked over my old reports, and had been doing a little reading about it.) She asked me to tell her if I had any seizures going on during the test. When she had me lay down, the bed was very comfortable, and she even said I could lay on my side. She covered me up and everything, even asked if I wanted music. I didn't quite fall asleep.
Then I went to MRI. They took me in on time. I went to a little private room where they put an IV in, I got dressed, and put my stuff in a rolling locker. There was an easy chair / phlebotomy chair and a TV with the remote on the arm of the chair. I had to wait a bit as they were running behind. They put the locker in a different room and gave me the key. They said it would be a long one, about an hour. Nice warm blanket. Near the end they gave me the contrast. When the took the IV out, they wrapped my arm with gauze instead of a bandage for better compression.
My impression from both tests was that, either they are very thorough with all their patients, or my doctor had specifically ordered thorough testing. (Although, maybe things have changed since last time I had them.)
The next day, Friday, I went to the front desk and asked if I could get an appointment with Sleep Medicine before Wednesday. They told me to be a "checker". If you have free time, and have a future appointment, you can go to the department and tell them you want to be a checker. That means you are on a list in case they have any cancellations, etc. I went up there about 10 or 11 AM. The guy told me I had to be there at certain times, like 8 AM or 1PM, since the "checker" list fills up quick. I asked him if it mattered who I saw. He said that requests from certain departments, like neurology, go to certain doctors in sleep medicine, but that I could see anyone. I asked back at neurology, and they said it didn't matter. I went back to Sleep Medicine at 1 PM, and as it turned out, they had an appointment available at 1:30, so I didn't even have to be a checker. If you are a checker you have to wait in the waiting room until you get called, which could be 4 hours.
The sleep appointment didn't go great. It was the usual, I can't communicate adequately, and the doctor isn't listening thing. I wanted a good evaluation. Ever since I have had epilepsy, and even somewhat before, I have had problems with fatigue and not feeling good when I wake up. They didn't order any tests, and wanted to treat me for insomnia. So, I told my neurologist and he's setting me up with a guy he knows at a later date. Hopefully that will go better. That was the only bad experience I had. Next time, I'll just wait for the appointment my doctor made. As a note, it seems like things tend to go much better at the Mayo if you allow them to do everything for you. When you start trying to arrange things yourself it can be difficult.
I didn't have any appointments then till the following Wednesday. First thing Wednesday was blood work. They did it in the morning on account of not taking your meds before you get your blood drawn, so that they can get a good level.
Then I went to the Psychiatrist. The Psychiatric nurse took my history, and I spoke with the Psychiatrist for maybe 15 minutes. It went well. Again it was efficient, they paid attention to what I was telling them, and they made good recommendations. They also offered me a stress management class with the education department the next day.
After that I saw a nutritionist. At the very beginning of my visit, with my Epileptologist, I requested to be put on a diet for the seizures. I told them I was open to all options, but it seemed to me that the diet should come before cutting me open. At the appointment with the dietician she gave me the option of the Low Glycemic Index diet and the Modified Atkins diet. I chose the first, because for years I have been eating a high carbohydrate low fat diet, the exact opposite of a ketogenic diet, and the Low Glycemic Index allowed the most flexibility. She showed me some good resources, and we discussed it. Since the change is so radical for me (literally most days the only fat I ate was some milk with my oatmeal), it would have been better if she could have given me a starter menu for a month or something. However, it went well and I found an app for my iPhone to help me calculate what I am eating. After a while I'll get the hang of it.
My last appointment on Wednesday was a follow up with my Neurologist. I saw the intern, not the staff doctor. It was mostly just to wrap things up. I mentioned to her one error on the report from the previous visit. More especially I was concerned that none of my doctors had yet identified the nature of my epilepsy as being parietal lobe epilepsy, rather than frontal or temporal. My tumor is in the frontal/temporal area. I asked her if she agreed my sensory seizures were in fact seizures, and she said yes (others seem to have questioned this). I also confirmed with her that as far as we can know, I was likely correct in some of my conclusions based on my reading. I can't tell you how awesome this was, not because I was right, but because I really felt that they were taking my descriptions of my seizures and other symptoms seriously. Other doctors may have also taken them seriously, but they didn't say anything, so you don't really know. The last thing I should mention is that, even though this time they decided not to take me off meds and do a VEEG, they took me seriously enough not to have to do that. They believed I was having seizures based on my reporting, even though my symptoms are apparently unusual. As far as plans go, we aren't making any changes in my meds until my next visit in a couple months. That is so we can see how well the diet is working. I thought that was a good call.
On Thursday I went to the patient education center for a coping with stress appointment. There was nothing revelatory, but it was helpful. I didn't say anything, but they were using something from one of the old Greek philosophers, Epictetus, which I thought was very good. He distinguishes between things you can do something about, and things you can't do anything about, and tells you not to worry about the latter. He gives the example of going to the baths. He says that if you go the the baths, don't get mad that people are splashing water, because you know they will splash water, and there isn't anything you can do about it. Good advice. The patient education center, in addition to nice educational brochures, and a small library, had lots of cool anatomical models you could mess with. I spent a little while with the brain model, going over the anatomy I have been trying to learn, and trying to visualize where my tumor is.
Since the trip a few weeks ago, I called my dietician. She was very helpful, and let me know she would be back after Memorial day in case I needed to call again, although she said that I could talk with one of her colleagues in the mean time. I also received a call from the doctor's office regarding a new prescription, just to check up on me.
For my conclusions about the experience, click here.
The first posting is a description of my experience, to skip to the conclusions, click here.
About me: I had my first seizure at 9, and then a few more, until at 11 my parents took me to Children's Hospital in Pittsburgh, where it was discovered that I had a brain tumor, and then to MD Anderson in Houston. My parents, especially my dad who had a serious chronic illness, didn't fool around and got me the best care. At first they thought I had cancer, but it turned out this was not the case. The only problem was that I didn't exactly get treated as an epilepsy patient. Over my life I saw a lot of good doctors at a number of world class hospitals. However, for one reason or another not much was done besides medicate me, they didn't look too closely into my problems, and I didn't get the kind of ongoing care that I should have had. For most of that time it didn't matter, because I was fairly well. About 15 years ago things started getting worse, and about ten years ago they got much worse. Again, I got some excellent care, but not the continuing care that I needed. That changed when I moved to Minnesota and ended up on Medicaid. It turns out that the local hospital here in Red Wing, MN is a Mayo Clinic hospital, and it was easy to get an appointment at the Mayo Clinic in Rochester. The opportunity was huge for me.
Things were not going well for me with my recent move from Virginia and I was depressed out of my mind. I was alone. It got so bad that I realized I needed to go to the hospital, even without insurance. I skipped the emergency room, went to make an appointment with a neurologist, and asked if a psychiatrist was available. There weren't any doctors available so I saw a Physician's Assistant. She helped me out, and then scheduled for someone call me to make a neurology appointment in Rochester. I then saw a social worker, who directed me to someone who helped me apply for Medical Assistance (Medicaid). It came through right away. I got an appointment in Rochester in just a few weeks.
I was uncomfortable because the appointment was made with an intern (a doctor who is studying to become a specialist), rather than with one of their regular staff, and there were no other arrangements made. This really bothered me because I needed an experienced epileptologist and wanted a complete work up. They said I should be ready to stay 5-7 days. I found a cheap way to get there and a free place to stay in a house run by the Greek Orthodox Church.
There are two campuses, about a mile apart. All my appointments were on the main campus, but I did visit St. Mary's campus briefly.
My first appointment was on Thursday at 7 something in the morning. The first thing I noticed was how nice the place was, it was more like a resort or hotel lobby than a hospital. I forgot my paper with the appointment information, so I went to the main entrance, waited in line a few minutes, told them who I was, gave them some forms they had sent me to fill out, showed them my medicaid card, and they printed out a great schedule of my whole day.
First I went to neurology. Everything is easy to find, and if you get confused there are very capable people to help you everywhere. I went to the main desk, and gave them a huge stack of records, with my MRI and EEG cds. I had prepared them by getting everything copied, and put in order in a stack without staples. I also included a very long summary including specific details about why I was there, what I hoped to do, and what my goals were. I gave very detailed descriptions of my seizures, and a whole medical history compiled from the records. I have never done that before and it worked out well. I feel like I can never communicate in a doctor's office, so I just wrote answers to all the questions I knew they would ask.
All the departments run the same way. You go to the desk indicated on your schedule. I never had to wait more than a few minutes, although it was busier around noon. You check in and they give you a beeper. You then have to stay in the waiting area, which is always comfortable. Your appointment is on time, or even early if they are free. No waiting around for hours.
A nurse or physician's assistant took my vitals and some info. The examination rooms are comfortable, well maintained, and all have a cushioned bench so several people can sit there. I had to wait in the room for a while because I had given them a lot of records for them to look through. I saw the doctor who was the intern, Dr. Kelly. She was great. She took my history and asked me some questions, maybe half an hour or more. Then she went to get her supervisor, a staff epileptologist, Dr. Britton. I waited in the room there for a while, while they discussed my case. I liked Dr. Britton. He's not warm and fuzzy, but he takes you very seriously. I told him that I was open to anything, but wanted to try a diet first. We talked about the options and my meds. We agreed to a plan of action. He decided not to take me off my meds on VEEG (much to my surprise), unless we looked more into surgery. He took my thoughts about the meds very seriously. He decided not to do anything with the meds until I had been on the diet for a couple months, so that we could see how well it was working, and not get it confused with any changes in the meds. By the time I left neurology I had a whole new schedule, including appointments the following Wednesday, and a sleep consultation the week after that.
The first test was a EKG (ECG), which I thought was odd, but I did complain about my heart beating fast. They took me back into a little changing room, had me take my shirt off, I left everything there and took the key. They laid me down, put the leads on, and it was done in like a minute.
Then I went to EEG. It was the most thorough examination I have had. They hooked me up, had me look at funky pictures, had me hyperventilate for several minutes, and did a lot with the lights. She was the first EEG tech to ask me what kind of seizures I had, and she wanted very specific details. She wanted to know so that she knew what to look for. She answered some questions I had. (I had looked over my old reports, and had been doing a little reading about it.) She asked me to tell her if I had any seizures going on during the test. When she had me lay down, the bed was very comfortable, and she even said I could lay on my side. She covered me up and everything, even asked if I wanted music. I didn't quite fall asleep.
Then I went to MRI. They took me in on time. I went to a little private room where they put an IV in, I got dressed, and put my stuff in a rolling locker. There was an easy chair / phlebotomy chair and a TV with the remote on the arm of the chair. I had to wait a bit as they were running behind. They put the locker in a different room and gave me the key. They said it would be a long one, about an hour. Nice warm blanket. Near the end they gave me the contrast. When the took the IV out, they wrapped my arm with gauze instead of a bandage for better compression.
My impression from both tests was that, either they are very thorough with all their patients, or my doctor had specifically ordered thorough testing. (Although, maybe things have changed since last time I had them.)
The next day, Friday, I went to the front desk and asked if I could get an appointment with Sleep Medicine before Wednesday. They told me to be a "checker". If you have free time, and have a future appointment, you can go to the department and tell them you want to be a checker. That means you are on a list in case they have any cancellations, etc. I went up there about 10 or 11 AM. The guy told me I had to be there at certain times, like 8 AM or 1PM, since the "checker" list fills up quick. I asked him if it mattered who I saw. He said that requests from certain departments, like neurology, go to certain doctors in sleep medicine, but that I could see anyone. I asked back at neurology, and they said it didn't matter. I went back to Sleep Medicine at 1 PM, and as it turned out, they had an appointment available at 1:30, so I didn't even have to be a checker. If you are a checker you have to wait in the waiting room until you get called, which could be 4 hours.
The sleep appointment didn't go great. It was the usual, I can't communicate adequately, and the doctor isn't listening thing. I wanted a good evaluation. Ever since I have had epilepsy, and even somewhat before, I have had problems with fatigue and not feeling good when I wake up. They didn't order any tests, and wanted to treat me for insomnia. So, I told my neurologist and he's setting me up with a guy he knows at a later date. Hopefully that will go better. That was the only bad experience I had. Next time, I'll just wait for the appointment my doctor made. As a note, it seems like things tend to go much better at the Mayo if you allow them to do everything for you. When you start trying to arrange things yourself it can be difficult.
I didn't have any appointments then till the following Wednesday. First thing Wednesday was blood work. They did it in the morning on account of not taking your meds before you get your blood drawn, so that they can get a good level.
Then I went to the Psychiatrist. The Psychiatric nurse took my history, and I spoke with the Psychiatrist for maybe 15 minutes. It went well. Again it was efficient, they paid attention to what I was telling them, and they made good recommendations. They also offered me a stress management class with the education department the next day.
After that I saw a nutritionist. At the very beginning of my visit, with my Epileptologist, I requested to be put on a diet for the seizures. I told them I was open to all options, but it seemed to me that the diet should come before cutting me open. At the appointment with the dietician she gave me the option of the Low Glycemic Index diet and the Modified Atkins diet. I chose the first, because for years I have been eating a high carbohydrate low fat diet, the exact opposite of a ketogenic diet, and the Low Glycemic Index allowed the most flexibility. She showed me some good resources, and we discussed it. Since the change is so radical for me (literally most days the only fat I ate was some milk with my oatmeal), it would have been better if she could have given me a starter menu for a month or something. However, it went well and I found an app for my iPhone to help me calculate what I am eating. After a while I'll get the hang of it.
My last appointment on Wednesday was a follow up with my Neurologist. I saw the intern, not the staff doctor. It was mostly just to wrap things up. I mentioned to her one error on the report from the previous visit. More especially I was concerned that none of my doctors had yet identified the nature of my epilepsy as being parietal lobe epilepsy, rather than frontal or temporal. My tumor is in the frontal/temporal area. I asked her if she agreed my sensory seizures were in fact seizures, and she said yes (others seem to have questioned this). I also confirmed with her that as far as we can know, I was likely correct in some of my conclusions based on my reading. I can't tell you how awesome this was, not because I was right, but because I really felt that they were taking my descriptions of my seizures and other symptoms seriously. Other doctors may have also taken them seriously, but they didn't say anything, so you don't really know. The last thing I should mention is that, even though this time they decided not to take me off meds and do a VEEG, they took me seriously enough not to have to do that. They believed I was having seizures based on my reporting, even though my symptoms are apparently unusual. As far as plans go, we aren't making any changes in my meds until my next visit in a couple months. That is so we can see how well the diet is working. I thought that was a good call.
On Thursday I went to the patient education center for a coping with stress appointment. There was nothing revelatory, but it was helpful. I didn't say anything, but they were using something from one of the old Greek philosophers, Epictetus, which I thought was very good. He distinguishes between things you can do something about, and things you can't do anything about, and tells you not to worry about the latter. He gives the example of going to the baths. He says that if you go the the baths, don't get mad that people are splashing water, because you know they will splash water, and there isn't anything you can do about it. Good advice. The patient education center, in addition to nice educational brochures, and a small library, had lots of cool anatomical models you could mess with. I spent a little while with the brain model, going over the anatomy I have been trying to learn, and trying to visualize where my tumor is.
Since the trip a few weeks ago, I called my dietician. She was very helpful, and let me know she would be back after Memorial day in case I needed to call again, although she said that I could talk with one of her colleagues in the mean time. I also received a call from the doctor's office regarding a new prescription, just to check up on me.
For my conclusions about the experience, click here.
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