QSS...The Verdict

2011 started out with a lot of nerves and excitement. On January 5th my parents and I flew out to California. I learned on that flight, I do not like flying really low over water. Being able to see the ripples in the water, the shadow of the airplane, and the buoys floating, made things a little unsettling for me. On January 6, 2011 I would be seeing Dr. T to determine if I have Quadrilateral Space Syndrome. To say I was scared would be an understatement. What if my parents just flew me out to see this doctor and he said there is nothing wrong? What if this doctor treats me the same way as the "doctor" in St. Louis? What if I am told, I don't know what is causing your symptoms? All of these types of questions were rolling around in mind all day. It was tiring. You do what you can to keep your mind preoccupied but sometimes the nerves are too strong.

View from the window seat on the airplane.

January 6, 2011: Anybody that knows me, knows as soon as I wake up in the morning, I am eating breakfast within 5 minutes. Not this day; I was so nervous for the doctor appointment, I could not even eat breakfast. I had pancakes sitting in from of me and as soon as I would go to eat, I felt like I was going to be sick. To this day, I don't think I have ever been this nervous. All I wanted was to get to the doctor's office; 9:00am couldn't come soon enough

This is just a picture of the doctor's office. 

When my parents and I arrived at the doctor's office we headed inside. As we walked into the lobby and started for the elevator, my mom looked at me and said, "Are you okay little one?" When my mom asks me this question, it always makes me smile because I am a good 6 inches taller than her. With a smirk on my face, I looked at my mom and told her I do not feel good and I am dizzy. We both knew I didn't feel good because of the nerves. After I was brought into the exam room, the medical assistant came in to check my blood pressure and check my heart rate. The look on the medical assistant's face said it all. She turned, looked at me and asked "Do you feel okay? Are you nervous?" I couldn't speak. I just shook my head yes. She then said, "Girl, don't you worry. We're going to take good care of you." With that, my mom asked what my heart rate was? The medical assistant said, "144!" No wonder I didn't feel good and was dizzy. Nerves can do strange things to your body.

After the medical assistant left, Dr. T walked into the room. Surprisingly, Dr. T was extremely nice. We talked about my history and my symptoms. One of the questions Dr. T asked me was, "How did you find me?" I told him I only found one doctor who had written an article about QSS as I was researching and it happened to be him. Dr. T slightly smiled and told me that is how his patients usually find him. He also said he didn't know of any other doctor that deals with quadrilateral space syndrome. To test the suspicion of Quadrilateral Space Syndrome, Dr. T injected a numbing medication into the quadrilateral space in the back of my right shoulder. Within minutes, I went from being able to raise my arm about 45 degrees in front of my body to raising my arm to shoulder level. Dr. T looked at me and said, "Yes, you do have Quadrilateral Space Syndrome. The sharp pain you get when you raise your arm forward is from your axillary nerve getting compressed. You will need decompression surgery." Before I could have surgery, Dr. T informed me I had to have my right scapular muscles reattached, and my right shoulder joint stabilized first.

When I left the doctor's office and got into the lobby, my mom and I looked at each other and just started crying. My dad looked at us with the, "You were just fine. What's wrong with you look." My mom and I were crying happy validation tears. You might be thinking how in the world could we be happy when we were just told I do have QSS and I need to have other surgeries done first. There are no words to describe the emotional rollercoaster that you go through when for almost 3 years you say you are having sharp pain down the back of your arm, and you are either told there's nothing wrong with you, or your doctor's can't find the source of the pain. In its own way, flying out to California felt risky because less than 3 months earlier I had gone to St. Louis with my mom and was insulted beyond belief. Not only was this "doctor" WRONG in the diagnosis but she was wrong about me from a psychiatric perspective. It's sad, but I sometimes think doctors (like the one in St. Louis) forget they are dealing with a human beings and forget how their decisions can either positively or negatively effect our lives. Once again it scares me to think where I would be if I, or my parent's had listened to St. Louis "doctor's" advice. I can't stress it enough, you have to listen to your body. You may have learned by now through my course of treatment, I try not to let a conflicting opinion from any of the medical professionals make me doubt myself. I know what I am feeling and I know what I am experiencing. If you have been following my blog, there have been far too many incidents where opinions have been incorrect. If I hadn't pushed the issue who knows what condition I would be in today. Validation and hope are very, very strong emotions. When I left Dr. T's office that day, I felt both.

My mom and I on the California coast. 

 My dad and I

I Think You Have QSS

The car ride home from St. Louis was a bag of mixed emotions. It is very hard to explain how hard it is mentally to prepare for a doctor appointment and then have the doctor be extremely rude to you. When you are told, "there's nothing wrong" and to "stop playing games" it really makes you question your symptoms and makes you doubt yourself. In your head you end up re-playing the doctor's appointment over and over and over again. It is really hard to put all of those emotions to the side and in a sense come back to reality. You can be as mad as you want, but at the end of the day being that mad and getting hung up on what a doctor says, isn't going to solve anything. I left St. Louis with the same sharp piercing pain down the back of my arm and not a step closer to any answers. Other than seeing the St. Louis Arch, this trip was a total waste of time.

This picture was taken in April 2008. I had this sharp,

piercing pain down the back of my arm for over

2.5 years. I couldn't raise my arm higher than this without

exacerbating my symptoms. 

After my mom and I got home, the first thing I did was schedule an appointment with Dr. B in Kentucky; I needed to see him anyways for a left shoulder blade check-up so I figured I would find out how we are supposed to proceed with my right shoulder/shoulder blade/sharp pain down the back of my arm. Before seeing Dr. B, I kept doing research on Quadrilateral Space Syndrome (QSS) and the more I read, the more I was certain this is what was causing my pain. QSS is when the axillary nerve gets compressed causing sharp pain down the back of the arm. While doing the research, I came across a doctor in California. When I read in California, the first thought that crossed my mind was, "Oh, crap! Hey mom and dad I found a doctor. Oh yeah, by the way he is in California!!" We would have to fly in order to see him. Later that day, I told my parents and they told me they would take me wherever we have to go to get me better. On this website, the California doctor's email was on it. At this point I had absolutely nothing to lose. I emailed the doctor about my symptoms and crossed my fingers he would respond even though I knew the likelihood was slim to none.

In November 2010, three weeks and one day after seeing the "doctor" in St. Louis, I was in Kentucky with my mom seeing Dr. B. I went into the appointment ready with information in my bag on QSS; I was going to bring the information out in case Dr. B told me he wasn't sure what was causing my pain. At this point, I have been seeing Dr. B for 3 years so we have a very good relationship. The atmosphere is calm and my nerves are not flying through the roof. Dr. B sat down and I talked to him about my symptoms. After explaining my symptoms, he said, "You know, I think you might have this rare nerve condition called Quadrilateral Space Syndrome." I looked at him and said, "Oh really, I know exactly what that is. I have information in my bag on it." Dr. B looked at me and just smiled.

After a few seconds went by, I told Dr. B there is a Dr. T in California that deals with QSS. I also told him I had emailed Dr. T but got no response (I didn't expect one since I was not a patient of his). Dr. B then told me he didn't know Dr. T but knew one of his associates. He said he was going to contact the associate, who can then talk to Dr. T that way I could email Dr. T again and get a response. Before we left Dr. B, I told him about what happened in St. Louis and was fearful this doctor in California wouldn't believe me and think I'm "playing a game". Dr. B told me he would send a psychological evaluation to Dr. T's office so they know about my extensive history, my personality type and my mental status. This is one of the benefits of being with the same doctor for a long time. Dr. B knows I am not being dramatic and he also knows that I know my body very well. It is great to have a doctor on your side who believes you and can validate everything that has happened.

When I got home from Kentucky, the phone calls and emails to California started. It is kind of funny because the doctor's email address that I found on the website about QSS originally is the same exact email I used after going to Kentucky. Within one day I had a response from Dr.T. Since I got a response, I knew Dr. B had contacted Dr. T's associate and they have all been in contact. Finally things seemed to be moving in the right direction. When I got the okay to schedule an appointment in California, I decided it was best to go in January of 2011 because I only had one month of school left and my nephew was going to be born in December. So the official date of seeing Dr. T was set for January 6, 2011. Now all there was to do was get through school, meet my nephew, and get through Christmas. It's a good thing the end of the year was busy because it kept me preoccupied.

Next stop is flying to California to determine if I have Quadrilateral Space Syndrome...

 My nephew Austin born on December 17, 2010

 Christmas 2010 with my Grandpa

A fundraising page was created to help with medical expenses. If you would like to donate follow the link below. Thank you!!

https://www.giveforward.com/fundraiser/cn33/my-impossible-medical-journey-fund