Tuesday, May 28, 2013

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!!

1 comment:

  1. Hi Mega,

    My name is Roz and I am going through similar problems. I have a filed Pro Disc C implant that was placed overseas. I too am going to school for Nursing at an older age than you. I was dx with QSS but everyone blows off that diagnosis. I have severe pain going down my posterior arm and shoulders. MRI show sever compression on my nerve roots at c5-6 and I have complete atrophy of my teres minor.

    If you would share who helped you maybe I might get a right diagnosis. I have lost use of my left arm, severe weakness and drop everything. Email me would you.

    I am so sorry for what you have been through, but finally you are getting answers and getting the help. You are a fighter and doctors who treat you badly have no business in the profession. I ran into the same in Chicago at Rush Hospital and at U of Michigan and Case Wester. I sent my films to Dr. Daniel Riew in sT. Louis but all he said was my disc failed and offered nothing else. I am still looking.

    I wish you well in all of your endeavors