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My Experience on the Other Side of the Treatment Table

Written by Mindy Simon MSPT, Cert MDT, OCS, ATC
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Mindy SimonI have been very fortunate to have worked as a Physical Therapist for the past thirteen years for this wonderful company. I think most of my colleagues, myself included, became a PT so they can help people improve their lives by enhancing their function. Hopefully, most of us have a strong sense of empathy that lets us look at a physical problem from your patient’s perspective; what their goals and needs are should always take precedence over what I think their goals should be. Just when a person (me) thinks she is pretty good at being an empathetic person, life and God have a way of showing you that you can always improve…


I have had an interesting last 7 months of my life to say the least. I haven’t been shy about sharing my experiences because I feel that my being here is a God thing plus putting my story out there also demonstrates just how wonderful my direct and extended support system is. My story starts earlier in 2016, when I began to experience a sudden onset of neck pain. I couldn’t turn my head well over my left shoulder, probably most people have experienced something like this during their lives. Symptoms improved over the summer but never went away completely. But I was functioning just fine overall.

Flash forward to the fall of 2016. That general neck soreness was definitely worsening. The week or two leading up to Thanksgiving, I needed to take progressive amounts of ibuprofen to get through my work day. But by then, it was Thanksgiving and time to celebrate with our families, not seek out a doctor appointment. That Saturday, I took my oldest son across the state to watch the High School Football state finals. We met my parents and some extended family about an hour away from GR so we could all drive together. I just didn’t feel well, it seemed like I was extremely sensitive to the movement of my parents’ vehicle which was weird as I’ve never been car-sick before, plus I still had this headache that wouldn’t die.

Looking back, I was so lucky that what happened a few days later didn’t occur while we were in Detroit. Anyway, my son and I returned home late Saturday but the next morning, I still didn’t feel well, to the point of saying to my husband, “Maybe I should take a pregnancy test?” At that point, we found out we were newly pregnant with our third child (a huge blessing as we had lost a child to miscarriage only a few months ago)! I was happy but also a bit scared, how was I going to manage this pain on Tylenol alone since a pregnant woman is not supposed to take ibuprofen? On Monday, normally I work a good 8.5 hours and I knew I needed to call in sick. My head hurt so much that I called my primary care doctor and my ob’s office asking what I should do. Needless to say, as a PT, I had already tried their suggestions and then some to treat myself. By Tuesday morning, I realized I just needed to get up and get ready for work, essentially to suck it up knowing it was going to be 9 more months until I got to take ibuprofen again!

The process of taking my shower told me that something was horribly wrong though! I’m a pretty strong person but I was having difficulty raising my left arm overhead to wash my hair. I woke up my husband and we rushed to the emergency room with our two kids in tow. When you tell the triage person that you are newly pregnant and also having some neurological symptoms, they get you in fast! My testing revealed I had a large clot in one of my dural venous sinuses of my brain, basically the largest vein that would drain blood away from my brain. I was transported to another hospital later that day and a few days later, had a first procedure to remove the clot that was not successful. Later that night, things started to go downhill for me.

The strength and coordination tests I had been doing pretty well before started to be challenging, and now my right arm was weak too. I have always been good at reading people, and I could read fear in my caregivers’ eyes. It wasn’t too long until they whisked me away to get another MRI. I remember feeling a definite sense of foreboding, thinking, “Our sons might be losing their mom.” Sometime later that night, I lost consciousness and was also placed on a respirator. Of course, I have no recollection of the next few days but according to everyone else, the doctors managing my care came to my husband and parents the next day with a possible procedure that might save me, one which was a brainstormed idea, not one based on established protocol or anything from the research literature. Unfortunately, the medical team did not have a Plan B to offer me or my family if this didn’t work.

Luckily, my family decided that I would want them to try and a few hours later, a team of interventional neurology, neurosurgical and neurology specialists were able to remove a very large clot from the affected vein of my brain after making an access hole through my cranium. The post-procedure MRI looked much better but they cautioned my family that all they could do was wait and see. Nothing much changed with my neurological tests or level of consciousness for the next 48 hours until finally late Sunday night, I began to follow some commands, squeezing some hands, etc. I woke up more completely the next day, being able to tell my interventional radiology nurse what her name was and also wondering why on earth there were so many people (medical and extended family) in my hospital room!


The next several weeks were luckily filled with improvements upon improvements. I went from complete bed rest for 8 days, no food, not being conscious and requiring intubation to sitting on the side of my bed in the hospital and beginning to progressively walk with a walker, first in my room then later down the hall. About 5 days later, I was transferred to Mary Free Bed for inpatient rehab for 1.5 weeks of exhausting physical, occupational and speech therapies. But during that time, I progressively was able to walk without help, do stairs, and begin to multi-task activities again. My before and after tests for all three specialties improved significantly but I was still exhausted after just an hour or two of activity, especially if I pushed myself too hard. It took the next several months of outpatient physical therapy (performed under the careful supervision of my CPR coworkers!) and speech therapy, but I could see that I was getting better. Ultimately, I was able to return to the job I love 2.5 months after this all started and I’ve been back to work at 36-40 hours a week for quite some time. We’re getting ready to welcome our third child, our daughter, in about 3 weeks and amazingly, she has been unscathed by this whole experience! I have no doubt that the thousands of prayers said on my behalf led directly to this miracle!


As for what I’ve learned from this whole process…well, I can make a very large list but these are the ones that have shaped me the most:

  • Prayers are amazingly powerful. We all have had those patients whose stories touch your soul and I very much don’t hesitate to offer up a little silent prayer for those people in hopes that their burden can be lightened in some way. Consider it my way of giving back a little for what others have done for me.

 

  • Having empathy as a health care provider is so important! Admittedly, my empathy has gotten a nice little jolt from this experience. I never comprehended before just how exhausting it can be to recover from an injury. Let me say, just hearing about the process of stroke recovery in PT school does not give it justice! Plus, I now understand a whole lot more when patients are frustrated by their perceived lack of progress or not being back to their full daily activities quite yet. I remember too well how it felt when I went home and was exhausted after emptying the dishwasher followed by paying a few bills especially when I compared it to my previous level of function. I’m just lucky that I was able to recover quickly and thoroughly, not everyone is that blessed. But hopefully, sharing my story helps someone else realize that they will get better too.

 

  • I had a patient ask me a personal medical question the other day, which she quickly prefaced with, “Unless you don’t like talking about it.” I immediately told her it was no big deal for me to talk about my experiences. In fact, I feel like it’s a bit of a duty to let people know that there are weird medical conditions that can happen to a person. Who expects a 37 year old healthy female to get a stroke but at the same time, you are more at risk for blood clots when you are pregnant and this is not limited to clots in the veins of your legs. I was lucky enough to realize that my symptoms were definitely neurological in nature but not everyone would. Hopefully, sharing my story helps to educate others.

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  • Never underestimate the power of a great support network! I had former classmates fill our freezer with food and send money to help with our bills, both of our families coming out to watch our kids and keep them distracted, neighbors offering to finish our Christmas shopping and wrapping, people in my hometown sending gift cards and saying daily prayers for my family and me, and numerous visits in the hospital from friends, coworkers and people from church. My coworkers at CPR even began praying for me as a group over their lunch hours. Looking back, we could not have done it without our extended network! I now realize even more that I need to step it up and try to lessen their load a bit when I see anyone struggling to cope with something in his or her life.
  • Finally, we have some amazing healthcare in the Grand Rapids area. I have a team of people to whom I owe my life and I did not have to leave home in order for my miraculous recovery to occur. We are truly lucky to live here and to have so many world-class medical professionals within minutes!

I know this is a longer than typical blog entry but these thoughts have all been in my heart over the past half year and needed to be shared. Thank you again to my awesome coworkers at the Center for Physical Rehabilitation for being so understanding and supportive. This is who we are as a company so I’m not surprised! Please don’t hesitate to contact us if you are dealing with a physical impairment that is preventing you from living your life to the fullest; we will all work our hardest to bring you back to your previous level of function or better!

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