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DON'T STOP UNTIL YOU REACH YOUR END GOAL | BE YOUR OWN ADVOCATE!

I want to share a little story with you all. After multiple years of wondering, what if something was missed by doctors? I finally decided I had to know. After talking with my doctor/miracle worker Dr. Andy Gibson an upper cervical chiropractor, he told me it wouldn't hurt to get another look at things. I recently started regaining more function in my core and throughout my lower extremities. I did not want to leave any stone unturned. So, my research started… I came across a Doctor by the name of Dr. Gregory Nemunaitis at the Cleveland Clinic. He is one of the top dogs of Spinal Cord Rehabilitation. I knew a few people that had went to the Cleveland Clinic for treatment and they had nothing but good things to say about it. How was I going to get in touch with this doctor? During conversation with my buddies’ grandfather, the Cleveland Clinic came up and I mentioned about trying to get into see a specific doctor there. Well, needless to say a few days later I received call from a friend that knew the Cleveland Clinic very well and told me to give “this number” a call. I immediately called and the lady on the other end of the line asked what doctor I would like to see; I proceeded to tell her and also explained the reason for wanting to come to the Cleveland Clinic. She explained that due to my concern about the bulging disc I had, that I would want to start with a doctor by the name of Dr. Augusto Hsia at the Center for Spine Health. A week later I was down at the Clinic to see Dr. Hsia, it was unreal how quickly I got an appointment.


Let’s stop here for a little side note. Isn’t life crazy? When you least expect things, they come your way. No matter what your beliefs are, I truly believe people come into your life for a reason. I sit here and think back about all the people that I have met through this crazy 10-year journey and every single person has taught me something and I truly hope I was able to help them in one way or another.


Ok, back to the story! Dr. Hsia reviewed all of my medical records and also past MRI’s, he was not to concerned about the bulging disc, but was amazed at my function for a quadriplegic. He ordered me to get another MRI to check on things and said he was going to refer me to Dr. Nemunaitis… WHAT?? The doctor that I researched, the guy who is nationally known for Spinal Cord Rehabilitation. I was so excited, but super nervous at the same time. My appointment with Dr. Nemunaitis was the following Tuesday at 1 o’clock. Why would I be nervous? I mean the worst he could say is that there was nothing he could do for me, right? That is right, but I was praying for something. No matter what the outcome was, it was not going to change my outlook/attitude on things.


The day has come to finally meet this doctor. We arrived an hour early and thank god we did! Have you ever been to the Cleveland Clinic? The place is HUGE! We arrived to the doctor’s office about 25 minutes early. I got all checked in and no sooner the nurse came to get me to go into an examination room, my wife was not allowed to come with me due to COVID restrictions. Great, now I was even more nervous! Well, needless to say my wife walked in with the doctor, the secretary over heard her talking to my mom on the phone and paged Dr. Nemunaitis to see if he would allow her to come in.


The doctor started out by asking me what brought me here today… THE NUMBER ONE QUESTION! I stated that I have been busting my ass for the past 9 years to get to where I am and recently started getting more movement in my lower extremities, I want to be sure nothing was missed. Also, I knew how many new trials were out there and felt that I would be a good candidate for a trial. I am a very healthy 29-year-old that has overcame all odds of getting to where I am today. The Dr. then said let’s see what you can do, we went through a series of tests. Starting with a pin, he began to poke me from head to toe. This was to see if the sensation changes throughout my body. I was able to feel everything from head to toe, he was pretty amazed, the only sensation difference was right by my hips (which is rather odd). We continued the sensation test with a cotton swab, which I was also able to feel everything. I really believe he was pretty amazed, but the tests weren’t over! Now, onto the motor functions… Started with my upper extremities-hands, biceps, triceps, and fingers. As I knew, he determined that my right side was noticeably weaker, but he was still impressed. Moving down to my lower extremities, the noticeable movement slowed way down at my hip flexors (my hip flexors are what assist me in walking with my KAFO braces). Dr. Nemunaitis continued down to my feet and really did not feel much muscle activity, but I still had some muscles firing in my quads. Isn’t it weird that I can feel everything, but can’t move it? We finished up the testing, the doctor left the room so I could get dressed and back up into my wheelchair.


A few moments went by and he came back in, he had a paper in his hand. This paper was a trial that the Cleveland Clinic was doing on patients for spinal cord injuries. The study was called “Spinal Cord Lesion Study”, it is a non-invasive brain stimulator applied over the scalp and hair. This study is to help patients with upper extremity impairments. If I perhaps get chosen for this study it might help bring some function back to my right arm/hand. We also discussed a tendon transfer to get my right-hand functioning again, this would be a surgery to transfer a tendon from my mid-arm to my finger flexors (if I understood him correctly). Regaining function in my right hand would be absolutely amazing! Now, I am going to wait and see if I am a candidate for the trial and if not, I very well may be looking into the tendon transfer.


The moral of this passage is that you cannot be afraid to be your own advocate. At the beginning stages of my injury, I was always scared to ask questions or what else I could try? Yes, you will get the answer “you are doing everything that you possibly can right now”, but that is ok, you asked and showed that you are WILLING to do whatever it takes to reach you end goal! Here I am 10 years post injury still searching for that one thing that may be out there that could get me to the next milestone. Never settle until you REACH YOUR GOAL, it may not be tomorrow, it may not be next year, hell it may not be for a couple years, but NEVER GIVE UP HOPE!








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