Blog Post 1 – Sarah Wagner

When I was about 15 years old, I had my first grand mal seizure.  A couple weeks later I had another and officially became epileptic.  I started to see a pediatric neurologist at Royal Oak Beaumont and I was beyond pleased to have him as my doctor.  He prescribed medication to keep me from having grand mal seizures, but occasionally I would have some less severe seizures.  (I won’t bother to go into detail for this blog post.)  When I was old enough to move on from pediatrics the doctor recommended I go to the University of Michigan hospital or the Henry Ford hospital.  My parents and I decided on the U of M hospital.  Huge mistake…

At first we were fine with their neurology department. We went through the typical deal where we played around with different medications but couldn’t find the right combination.  So we decided to try surgery.  The surgery was in January 2011.  They cut open my skull and put EEG leads over my left temporal lobe and observed me for ten days.  They lowered my medication a little to induce seizure activity.  They had me stay in the ICU overnight after the surgery and then moved me to the general medical unit.  The doctors wanted someone to always be in the room, so they had my mom stay with me for the rest of my stay.  If I went into a seizure they told her to click the nurse’s button.  She ran into it more than once where I would go into a grand mal seizure, she’d click the nurse’s button but no one would come into the room.  One time she went into the hallway and angrily yelled, “My daughter is in a grand mal seizure right now.  Is anyone going to come and do something about it?!”  For another seizure the EEG technician came into the room after and apologized that no one came in during that episode.  Just a couple of multiple examples showing how the don’t give full respect.

After the ten days of observing me they did a second surgery.  They first removed my EEG leads, then they removed a (tiny) section of my brain that they thought was the area where my seizures originate.  They told us before the surgery they weren’t 100% sure on the origin location but had enough confidence to try.  They still had me taking my medications after I left the hospital and I was confident we finally had control.  As it ends up, they didn’t solve my case.

My mom decided we needed to try a different hospital.  We made an appointment to one of the best hospitals worldwide: Mayo Clinic.  I had the same medical procedure as U of M.  They opened my skull, put the EEG leads on my left temporal lobe, and had me stay bedridden in a hospital room.  At Mayo Clinic, they had me stay in the ICU for the entire time I had the EEG leads on my brain.  There was always a nurse in the room, so they didn’t require my mom to stay.

After observing me for about five days the doctors at Mayo Clinic said the site is beyond where U of M thought.  Unfortunately, Mayo Clinic couldn’t safely perform surgery that deep into the brain.  If they tried and made even the slightest mistake I would possibly no longer understand language and speech.  They said we could try new medications or a vagus nerve stimulator (VNS).  They said there would be a 50/50 chance that the VNS would actually help. I had the surgery for the VNS and unfortunately it still doesn’t seem to help.  That’s not the point here.

The two hospitals are equally large and sophisticated medical systems, and in my experience, the system at U of M is flawed.  The personal care level at Mayo Clinic was different and well managed.  The personal interactions with staff seemed much more focused on me and my comfort.  With Mayo Clinic, I’d say it’s more than American biomedicine.  They are much more one-on-one and give more respect and care to their patients and the families.

3 thoughts on “Blog Post 1 – Sarah Wagner

  1. I have never had a long-term diagnosis such as yours where you not only had to have a regular relationship with the medical system but you also had to move around to different hospital systems. While our experiences differ on many levels, I believe our findings are pretty similar. There are certainly better hospitals and experiences than others, which is unfortunate, in my opinion, because healthcare should operate by the same standards to ensure everyone gets quality care. I would speculate that your time at U of M was the experience it was because they are a research hospital. Even though that doesn’t mean they have no compassion for their patients, it does mean that their end objective is not necessarily to save every patient but to advance the medical community. I would say that’s one of the more general issues in our medical system in America but I would say that could be the culprit of the difference between U of M and Mayo Clinic, all speculation of course.

  2. Sarah, I ‘m sorry to hear about your condition and hope that in the near future a treatment will be able to better help you with your seizures! That being said, I too have recently had some experience dealing with large hospitals over extended periods. My Dad has had some complications trying to find an oncologist to best fit his needs with his prostate cancer, and we similarly chose U of M as it is a large and very much respected hospital. Actually, we even chose it over Henry Ford as their oncology department is a little more cutting edge. I think it is difficult to find a good balance between highly skilled doctors and important time spent between the doctor and patient. In my Dad’s case at least, there are so many patients to be treated and met with the same day and time, that it is impossible for the doctor to give us all the time we truly want. I am happy you found a more personal connection at the Mayo Clinic and hope you continue to have a positive and healthy experience!

  3. This is really a terrible experience you had with the medical system. And even more unfortunate, is that you are not the only person that has had such negative experiences. My mom was in the hospital in 2013 very ill for months and was finally sent down to U of M, where the doctors were ‘confident’ that what they found was not what was causing the issues so they didn’t treat it. She was sent back to a local hospital where she was treated for the same illness U of M said wasn’t the problem, and was much better afterwards. I feel that U of M is better at life saving surgeries and procedures than they are with long term solutions and diseases. My grandmother had a double lung transplant there 2 months prior to my mothers admittance, and the whole experience was wonderful, so I feel that they definitely have their ups and downs depending on what you are there for, and displays just one of many flaws with our american medical system.

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