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!!

Friday, May 24, 2013

She is NOT a Nice Woman

Once I got the okay to start therapy after the scapular muscle reattachment in August, things were going relatively well at first. At therapy my therapist treated both shoulders. It was really difficult to rehabilitate my left side because things were super tight from the surgeries but we did make progress. The rehab on my right shoulder went well until I hit about 45 degrees of flexion and external rotation always hurt. When I did these motions the same sharp, piercing pain that I had before surgery down the back of my arm returned. It made progressing in therapy very difficult. My right shoulder would sit forward (not subluxated or dislocated) because every time we tried to get it to sit in its normal position, I had sharp pain down the back of my arm. At the end of August, the one day after physical therapy, I went home and started researching on the computer because nobody seemed to know what this sharp pain was. As I was researching, I came across Quadrilateral Space Syndrome (QSS) which is a rare condition where the axillary nerve gets compressed causing pain down the back of the arm. The more I read about QSS, the faster my heart began to beat. My symptoms matched exactly. I was 100% positive I had QSS so I emailed my physical therapist and sent him the information I had found.

When I saw my therapist at my next appointment, he too seemed to think I had QSS, however; when I met with Dr. K he did not. It was hard for me to hear Dr. K didn't think I had QSS because deep down I knew I did. Dr. K ordered an MRI which showed my capsule was loosening and an EMG (nerve) test which came back normal. I did more research and a lot of times QSS is diagnosed through a nerve block. I scheduled a consultation appointment with a neurologist and we decided to do a nerve block. At the next appointment, the neurologist tried to do a nerve block but because the anatomy in my shoulder is altered, he had a difficult time getting it in the correct spot; however, the little medication that did go in the correct spot helped immediately. When I got home I did more research and came across 2 doctors in Illinois that deal with QSS but of course they had retired. I called a hospital in Minnesota to see if they dealt with QSS and they did not. I called the doctor's office in Illinois where the 2 doctors retired to see if they knew of anyone that knew about this nerve condition. The office called me back a few days later and told me to go see a neurologist in St. Louis because she knows about QSS. The next day I called and scheduled an appointment for in October. I had to send ALL of my shoulder records, nerve records, MRI etc.

On October 13, 2010 my mom drove me down to St. Louis to meet with the neurologist who supposedly knows about QSS. From where we live, it is about a 6 hour drive to St. Louis. October 14, 2010 was the day I saw the neurologist. Once we arrived at the doctor's office, my mom and I were escorted into the exam room. The doctor's fellow assistant came into the room and asked me questions. He was very nice and seemed very interested in my case. After he had his questions answered, the fellow left the room and got the doctor. To my surprise, when the doctor walked in, she had three additional people with her plus the fellow that had just taken my history. This exam room was not a big room at all. There were a total of seven people in this room with the door closed. Talk about feeling closed in.

The doctor said her name in a very confident manner. She looked at me and asked, "Why are you here today?" I looked at her and replied, "To find out if I have quadrilateral space syndrome." The doctor then raised her finger up to her lips and said, "Let's just get this straight first, you do not have quadrilateral space syndrome." My mom and I looked at this doctor with such confusion. How could she possibly know if I had quadrilateral space syndrome? She never asked me what my symptoms were. She never layed a finger on me to exam me. She obviously had a preconceived notion and did not even bother to do her own assesment. That's just wrong. With a confused look on my face, I looked at the doctor and said, "Then why did I just drive 6 hours to come see you?" I don't know what answer I was expecting but what she told me was not the answer I thought I would get. This doctor looked at me and in a very snippy tone said, "Oh, don't worry, you're not wasting MY time." Really? Did she really think I felt bad because I'm wasting HER time? It was more like she was wasting my time. If she already had her mind made up about me then why wasn't I told this on the phone? I had just spent the past month gathering all my records, communicating back and forth with her nurse discussing this appointment, and my parents had just spent a lot of money for hotel reservations and taking time off work.

What proceeded after this initial encounter was a complete joke and flat out insulting. In the span of 30 minutes, this "doctor" told me: none of my surgeries were necessary, she said I kept saying there was a problem with my shoulders because I was looking for attention, she said I'm trying to outnumber the amount of surgery my mom had. She actually told me to be quiet and looked at my mom and told her to list the surgeries she has had. My mom listed the 8 surgeries and I made sure to chime in and say 2 of which were for her breast cancer. At that point I had, 15 surgeries. If I was trying to "outnumber" my mom don't you think I would stop at 9?? The "doctor" then looked at my mom and I said we both needed psychiatric treatment and my mom needs to stop buying into my "game". On top of it, she concluded the visit by insinuating Dr. K and Dr. B were "monkeys" and she made me go see one of HER orthopedics to evaluate my situation. Unknown to her, Dr. K and Dr. B are world reknowned; they would never do surgery on me if it wasn't necessary. I can't begin to explain how hard it was to keep my cool. I have never been so mad and despised a doctor this much in my life. It has taken me a week and a half to finish this blog. It would have been finished sooner but everytime I would start to write about this doctor, my blood would boil and I would get so mad; therefore, I clicked save and turned the computer off.

Later that afternoon, my mom took me to see this other orthopedic. She could not have been nicer but she was certainly confused. When she came into the room, the first thing she asked was, "Why are you here?" I said, "No clue, the other "doctor" made me come see you. She insinuated I was going to bad doctors for treatment." She had a confused look on her face. My mom and I continued to explain what had just happened at the previous appointment. The orthopedic then asked me who has been doing my shoulder surgeries. I replied, "Dr. K and Dr. B." The doctor then told me that I was certainly going to the best doctors. She knew Dr. K and knew a lot about Dr. B even though she hadn't met him personally. She reassured my mom and I that we were in great hands with 2 superb doctors. At this point, the doctor examined my shoulder. I told her she had to be very careful with my left shoulder because of the 2 recent surgeries. When she moved my left shoulder I felt something pop in the joint.  After she finished her assesment, she told me she didn't think I had quadrilateral space syndrome and she has no idea why the other "doctor" sent me over; the way she saw it, I have one really big surgery coming up to address my right scapula and the instability.

The St. Louis Arch 

 Touching the arch
 Me in front of the arch

Even though the overall trip to St. Louis was not a good one, it did have one positive. The fact that I had to go see another orthopedic and this doctor agreed with Dr. K and Dr. B's course of treatment, gave me more reassurance that I was with VERY good doctors. Over the years, I have been questioned why I continue to stay with these doctors even though there have been continued problems with my shoulders. The answer is simple. I trust them 100%. A relationship was built between Dr. K, Dr. B and myself. I saw these two doctors more than I saw my extended family. Why would I leave them when both of these doctors trust me? I have "stretchy" shoulder tissue. Multidirectional instability is challenging to treat. Scapular muscle detachment injuries are not common and the procedure changed. When you look at the big picture and all of the contributing factors it's not Dr. K and Dr. B's fault. I am just complicated.

Next stop was going to see Dr. K and Dr. B because I firmly believed I had quadrilateral space syndrome...

Saturday, May 11, 2013

Don't Miss Out on Life

The timing of the surgery I had in May 2010 on my left shoulder was fantastic. I had zero stress from school because the semester had ended, and classes didn't start up again until August. It was a relief knowing I could strictly focus on recovering from this surgery without thinking how much homework/studying I have to do rolling around in the back of my mind. It was wonderful. Physical therapy started at the end of June. It was extremely difficult because my muscle was detached from my shoulder blade. A lot of times people don't think of their shoulder joint and shoulder blade coinciding. In order to do the various motions you do with your shoulder joint your shoulder blade has to move in some sort of fashion. Since I could only progress so far, I called Dr. B in Kentucky and we decided it was in my best interest to get my left scapula fixed so I would be able to progress in therapy.

Before having my scapular surgery on July 20, 2010 I wanted to have some fun first. At this point I was 21 years old. This surgery was less than 2 months after I had just had surgery on my left shoulder joint. If you do not incorporate any amount of fun in your life when you're having all of this surgery (doesn't even have to be surgery, it can be anything) there is no way you would be happy or feel like you have a purpose in life. It is a daily reminder in the back of my mind that reminds me there is more than just medical stuff which is why I get up everyday and keep fighting to get better. My life isn't the ideal lifestyle but it sure could be a whole lot worse.

11 days before surgery. My nieces and I in Chicago in front of
 Buckingham Fountain. It was a fantastic day. The
sun was shining, it was hot and we walked around everywhere. 

6 days before surgery. This is my niece Emily and I having fun in the
hot tub. I am not holding her; she is on an inner tuber.

2 days before surgery. This is my dad and I
at Natural Bridge State Park. We took a ski lift up to the
top and walked around taking in the view.

July 20, 2010 was surgery day in Kentucky with Dr. B. I had left scapular muscle reattachment surgery. This surgery with the new technique was WAY more painful than the old way. The incision is longer and some of the muscles are transferred to help stabilize the shoulder blade. This time Dr. B took part of my latissimus dorsi, serratus, and rhomboid and mobilized them so they sat on top of the very bottom of my shoulder blade to stabilize it. Everything in your torso hurts when you wake up from surgery. The pain goes across the front of your chest and all over your back because a lot of muscles are pulled tighter and reattached that way. Laying on the incision hurts like no other. It feels like there is a golf ball sitting on the bottom of your shoulder blade because your body isn't used to having these newly attached muscles there. Luckily this sensation goes away once your body adapts to it. Coughing, sneezing, and laughing all took on a new world of their own; nothing like doing an innocent sneeze and having all those muscles pull on your shoulder blade causing an insane amount of pain.

Usually I make a fake smile for the camera. Not this time.
It was more just take the picture and be done.

This is the bandaging I had to wear.

16 staples. This surgery is SO painful. The muscles are pulled and resecured
to my scapula via 5 sets of drill holes and are then basically sewn back with sutures.

The worst part about having staples is the incision looks
very unattractive afterwards. It does start to look better after
a couple weeks. In this picture you can see the difference
between the incision length on my left and right. The position
of my shoulder blade also sat different on my right side. It kind of
looks like I am shrugging my right shoulder but I'm not. That's the way
it sat because there was nothing holding the bottom of my
scapula in position.

Two weeks after surgery was a very special day. My Grandpa King who had served in WWII and was a decorated hero went with my cousin to Washington D.C for the day through the program Honor Flight Chicago. What a great organization. My Grandpa had one of his most special days of his life. Unknowingly to him, as he and all the veterans were spending the day in Washington D.C, all of the veterans families were gathering at the airport, along with military bands, and military personnel. We all made a parade to welcome home every one of these heroes. I felt horrible but there was nothing that was going to stop me from going to this one and only time that would allow me to honor my grandpa in this way. We spent several hours standing there waiting for the heroes to arrive. It just about killed me. As some of the older gentlemen walked and others were wheeled out one by one and saw all the hoopla that was there for them, every thought of myself went away. The expressions I saw, the older men in tears, the smiles on the older gentlemens faces made this the most special event I have ever seen.

My mom and I waiting to see my grandpa. 

My Grandpa King. He was shocked. The expression on
his face says it all.

If there is any advice that I could give, it would be to participate in what gives you LIFE no matter how rat nasty you feel. I had every reason not to go to Honor Flight Chicago at the airport. It was late at night. It was crowded. There was nowhere to sit so that meant standing for several hours. I was only home from Kentucky for one week and was 2 weeks out from surgery. My grandpa would have certainly understood why I wasn't there. My point is when you decide to stay home really consider it because you could be giving up some once in a lifetime moments that will warm you heart forever and you do not want to regret missing them. Live your life and enjoy yourself.
The last summer blast before school starts with my nieces.
My sister, my mom, and I getting our picture
taken at my cousin's wedding. This was taken
2.5 weeks after surgery. I did not want to miss
their wedding. 

Tuesday, May 7, 2013

Of Course the Procedure Changed

After finding out from Dr. K that I needed to go see Dr. B sooner rather than later to find out what was going on with my shoulder blade, I notified all of my teachers. Luckily with the way my school schedule was, my parents were able to pick me up after class on a Thursday and from there we drove down to Lexington, Kentucky. This worked out well because I didn't miss any class and I would be back home Sunday to be back in class on Monday. Exactly one week after finding out I needed to go to Kentucky, I was in the Dr. B's waiting room with my parents. It is very odd when you go into an orthopedics office in a big shoulder brace on your one arm but you are seeing your doctor for the other side.

When Dr. B walked into the exam room he looked at me and asked how my shoulder was doing. He was under the impression I was seeing him for the shoulder that was braced and had surgery a few weeks prior. I told him my right was doing well all things considered but my left shoulder/ scapula was being problematic. When he heard this, Dr. B made the, "Oh, S#%!" face. Dr. B had me stand up and examined my left side. He felt the anterior (front) and posterior (back) instability in my shoulder; he also saw I had really bad scapular winging and something was not right with it.

It was at this point Dr. B said we could sit down. He took a deep breath and told me my left scapula would require surgery because the muscle was not fully attached. Dr. B also said the scapular procedure had changed so when he goes in, he is going to have to cut all the way down to the bottom of my shoulder blade and do a latissimus dorsi transfer. I was then informed before I could have the scapular surgery done, I would have to have my left shoulder joint addressed first because the bracing was different. Finally on top of that, since the procedure changed this meant I would have to have surgery my right scapula again as well because it too was winging funky at the bottom. Talk about feeling a bit overwhelmed!

When we got home from Kentucky, it was time to kick it into high gear and finish the final stretch of the semester. Between physical therapy and school, it made for a very busy time. In the midst of all the craziness, I met with Dr. K. Since the instability was getting so bad on my left side, it was decided we should operate at the end of May to get it fixed. I completely realize there wasn't necessarily enough healing time for my right shoulder. The problem was my left side was falling apart daily. Every single day, either my mom or my dad, would have to manipulate my shoulder back into place because it was either shifted out the front or out the back; not to mention all of the scapular winging that would occur. If you are not living with this issue, it may be difficult to completely understand why you would opt to have surgery this soon. Those couple months hurt like no other and it was both physically and mentally exhausting. My left shoulder was like a ticking time bomb; we never had any warning if it was going to shift out out of place.

May 26, 2010 I had left shoulder surgery once again. This time I had an open anterior and open posterior capsular shift. So basically the same exact thing that I had done on my right shoulder a few months prior. It was the longest overnight stay in a hospital that I have ever had. Since I already had this procedure done before, I knew what type of brace I was supposed to be in. Unfortunately, whoever put me in the shoulder brace after this surgery put me in the wrong one. On top of that, the brace was way too small. My arm was laying flat across my stomach when it should have looked like I was shaking hands with someone. Due to the positioning, the pain in my shoulder was excruciating. My mom was with me and I told her to take the shoulder brace off of me. She looked at me like I grew horns on top of my head. I told her this was the wrong bracing. My mom called the nurse to my room and insisted that she call Dr. K because there was no way I could stand being in that brace all night.

The nurse came back to the room 10 minutes later. She walked in with a VERY surprised look on her face. The nurse said she had just spoken to Dr. K on the phone and he said to let me do whatever I want to do. SCORE!! Thank God Dr. K knew I had enough experience at this point and knew something was wrong with this brace. So a few minutes later, my mom and the nurse took the brace off of me and helped me prop with a ton of pillows to get my arm in the correct position. Wow, what a relief. Was there pain? Yes. Was the pain as intense? No. The worst part was when I would get up to use the restroom and my mom literally had to hold my arm in the right position. Talk about a LONG, painful night.

The brace was way too small. The brace should cover my
entire hand. Only the tips of my fingers should be sticking out
if anything.

When Dr. K came to my room in the morning he caught me at one of my finest moments...Not. I was really, really crabby and bickering with my mom as he walked through the door. I saw him and thought crap. I literally huffed at him and said, "Hi Dr. K." My mom spotted the coffee in his hands. Dr. K was so kind and said, "Oh, I should have brought you a cup." How nice of him. Dr. K came to the side of my bed to see what the issue was. I handed him the sling and wished him good luck as he held it up and just stared at it. He put it on my arm to measure the length. Dr. K took in a deep breath, and a big long sigh afterwards. Oops. Someone's in trouble. Dr. K looked at me and said, "We'll get this fixed."

After I was released, I was sent to Dr. K's office where he had already arranged for a representative to drop off the proper brace. Good job Dr. K! While in the exam room, my mom and I teasingly asked Dr. K if we could just go to his house to recover because our house is loud and chaotic. He chuckled and said, "I wouldn't rest that well because he has two boys." My mom burst out laughing and said, "We live with Meg, myself, my husband, my 2 granddaughters, my other daughter, my 88 year old father, 2 dogs, and a fish named Cubby." We all chuckled and Dr. K said, "You're right. It would be quieter at my house." At that Dr. K got up to leave the room. Before doing so, he took a step back and gave me a quick hug. What a nice doctor. This is why I've been with him for now almost 7 years. He cares.

Saturday, May 4, 2013

Stuck Between a Rock and a Hard Place

After surgery in March of 2010, things were really, really rough. I did my best to try not to show how hard and miserable I felt. My stress level was through the roof. The classes I was taking were more demanding than previous ones. I had precalc, critical thinking and anatomy/physiology. My dominant right arm was braced for several weeks in a brace that was bigger than all of the previous ones. I felt huge! My left shoulder was in awful shape. I had both anterior (front) and posterior (back) shoulder instability making everything I did beyond difficult. My left arm was all I had. It took on all the demands of life. It's the arm I had to use to carry books (I couldn't use one of those backpacks on wheels that you pull because of my shoulder blade), write, shower, get dressed, eat, brush teeth, brush hair etc. Needless to say, my left was none to happy. There is a very good reason you are called right or left hand dominant. There are so many day to day motions that you go to with your dominant hand that you do not even realize; everyone takes it for granted. It's not until it's taken away that you realize how very important having that dominant hand is.

This was the only picture I could find of me in this brace. It made sleeping
a huge challenge.

Now you might be thinking, things couldn't possibly get any harder. Wrong! Two weeks after surgery, during my anatomy/physiology lab my left shoulder started killing. I tried to prop my right shoulder brace with my bag so I could unclip the strap to get the weight of the sling off of my left shoulder. I remember sitting at the table trying to keep-up taking notes as I felt my left shoulder blade literally move out of position. The pain was radiating up my neck and over the left side of my ribcage. Nobody in class knew there was a problem going on. I watched as the seconds ticked by on the clock and prayed they would go by faster.

When class ended, I gathered my things and had my fingers crossed my mom was already in the school parking lot waiting for me. I got downstairs and thank God there she was in the car waiting. She saw me walk towards the car and looked at me with an awkward, concerned expression on her face. After I got in the car, I told her my left shoulder blade was killing me like no other. Her eyes were wide and she calmly said, "I think we might have to go see Dr. K." I looked at her like she was nuts. In my mind, there was no reason I had to go see Dr. K. I told my mom to not overreact because there wasn't anything that wrong. Again, very calmly, my mom said, "When we get home, look at your shoulder blade and then tell me we don't need to see Dr. K. It doesn't look quite right."

After we got home, the first thing I did was go upstairs to my bedroom to take my shirt off and look at my shoulder blade. In that moment, I decided my mom was right and it was necessary to go see Dr. K. When I saw Dr. K it was actually kind of funny. Since Dr. K was squeezing me in, we expected to be waiting quite a while. They put me in an exam room and shut the door. As my mom and I were waiting we were getting restless. They had leg models with all the muscles on them so I decided to teach my mom because that's what we were learning in my anatomy/physiology class. The time kept going by and my mom all of a sudden says, "Does it seem awfully quiet in the hallway? I hope they didn't forget us." I looked at her and said, "I doubt they forgot about us." Well after some more time went by we both realized we had been waiting in this exam room for over 2 hours!! My mom opened the door and there was nobody to be found. The lights were off. I burst out laughing because this odd type of stuff always happens to us. My mom walked to the front desk and the secretary looked at my mom and said, "You're still here?!?" My mom said, "Yep. Meg hasn't been seen yet. Please tell me Dr. K didn't leave." The secretary told my mom go wait in the exam room because he was going to go get Dr. K.

My mom came back to the exam room and shut the door. The next thing we hear are running footsteps and a gentle knock on the door. In walks Dr. K very hesitantly. I'm positive he expected to get his head chewed off. Instead I looked at him and said, "Hi Dr.K, how are you? Something is not quite right with my left shoulder blade." He looked at my shoulder blade and said, "Oh my gosh. Something is definitetly not right." Dr. K gave me a shot of medication on the outside of my shoulder blade to help get my muscles to relax. He tried to manipulate my shoulder blade back into place but it wouldn't budge. The rest of that day Dr. K wanted me to take muscle relaxants because my muscles were in a crazy spasm. Dr. K then said I needed to go down to Kentucky to go see Dr. B.

My left scapula literally shifted out of place and had pretty bad scapular
winging. It would wing out farther when I would lift my arm in front of
me just a few inches.

The band-aid is where the shot of medicine went. This
is how my shoulder blade sat with my arm at my side. 

This shoulder blade issue made things even more complicated. I was just stuck with no arm to really use. School was a nightmare. It hit the point where I finally decided to leave my books at home because they were too heavy for me; instead I just carried a notebook and pencil to class. I still needed to wear the shoulder brace for my right shoulder and the weight of the brace was too much for my left shoulder blade. I ended up having to unclip the strap every time I was sitting and I would move the strap under my left armpit so the strap went across my chest so I didn't have the weight on top of my shoulder. Writing was even harder than it was before because it hurt to much to raise my arm high enough to write on a table. I would rotate my legs and write left handed in my lap instead. The hardest thing was accepting help. I felt so pathetic. Basic, easy, tasks were big obstacles now. Ex: opening a door, getting my seatbelt on, getting a cup from the cabinet, pouring a glass of juice, brushing my hair.

During times like this I learned I am capable of doing a lot more than I ever imagined and can still be successful. I learned I needed to modify even more to gain more independence. I realized I am a lot stronger than I thought I was. Writing about this time makes me wonder how the heck I got through those hard days and how I managed completing that semester of school. I think being blessed with my Grandpa King's "stubborn gene" helps me a lot too.

Next stop was going to Kentucky to figure out what the heck was going on with my shoulder blade...

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

Wednesday, May 1, 2013

"Google Only Get's You So Far"

Have you ever wanted to say something to a doctor because you were so aggravated with them but never thought you actually could, or for that matter would? Well this happened to me. In February of 2010, Dr. K wanted me to see another orthopedic at a different well known Chicago hospital just for a fresh set of eyes to make sure nothing was being overlooked since I continued to have shoulder instability. This doctor was supposed to be top of the line in his field. When you go to a new doctor, it can be quite a production when you have complex issues. Before seeing this doctor, I had to get all of my shoulder records and MRIs to their office before being evaluated. This is to provide time for the doctor to review your records thoroughly before meeting with you so they have an idea of what is going on.

When the day came to see this doctor, I was anxious to hear what this doctor's take was, but I was also nervous. It's always a bit nerve-wracking meeting a new doctor because you don't have a trusting relationship just yet. Once at the doctor's office, I was taken for x-rays; these were normal but it is standard protocol. Before the doctor came in, I met with his physician's assistant. She asked me about my history and why I have had so much surgery. I showed her the motion I had before I would subluxate. As usual, I was asked if I had any genetic soft-tissue disorders. My answer: no. After she took my history she left the room to go get the doctor.

The doctor knocked on the door and walked in with a cocky arrogance. He seemed to have his mind made up about me before he even met me. While I was standing, the doctor asked his questions and examined both of my shoulders. When my right arm was raised in front of me about 45 degrees, the doctor kept asking me why I would pull my arm away. I told him I had sharp, stabbing pain down the back of my arm. What proceeded next was close to civil verbal war. The doctor questioned all the scarring I had. He told me my muscles were NOT detached from my shoulder blades; my muscles were just "loose". I told him, "No, they are not just "loose". They were physically detached from the bone." He disagreed and kept telling me my muscles were just "loose". You can't even begin to understand how absolutely frustrating this is when you send your records weeks in advance to have them reviewed. The doctor by now is supposed to have an understanding of what you have been through. Instead he was very arrogant and very confrontational in his bedside manner.

After realizing that we weren't going to come to a verbal agreement with what was wrong with my shoulder blades, (even though the operative report was sitting in my chart on the table) he decided to examine my right shoulder while I was lying down on my back. By now my mom and I both realized this M.D. didn't believe a word I was saying and obviously didn't take the time to thoroughly review my operative reports. His aggravation was apparent in the less than gentle way he maneuvered my right shoulder. (To all my physical therapists who wonder why I have such a hard time relaxing when they try to do passive range of motion, this is why. I have been yanked and pulled on more than one occasion). By the time I sat back up, I was teary and the doctor was completely frustrated. He looked at me and snapped, "I don't know what's wrong with you." He followed it up by saying, "What do you think is wrong with you?" in an argumentative tone. By this point I was at my wits' end and I had, had it. I looked at him and snapped back, "I don't know. Google only gets you so far!" This angered him more and his mouth fell open. His little physician's assistant who was in the corner documenting this visit, smiled, put her head down and brought my chart up in front of her face so she wouldn't get caught.

The super-specialist then looked at my mother and I and said, "This is impossible." My mom took a deep breath, looked in the doctor's eyes and said, "With all due respect, this is not impossible. Your "impossible" is our reality. I guarantee you, this is not impossible. We live it every day." At that, the doctor looked stunned and said, "If you need surgery, I will be more than happy to do it." He then left the room.

Seriously?!? After telling me he doesn't know what is wrong, he offers to do surgery on me?!? I don't think so. My mom and I left that office and never returned again. I saw Dr. K the following week and told him, "I do not like him. He does not like me. We are oil and water. I refuse to see him again." Dr. K looked at me with a funny little smirk on his face. He knows that I usually get along well with all the medical professionals he has ever wanted me to see. Dr. K also knows that I am usually rather quiet and it must have taken a lot for me to verbally spar with this doctor. At that Dr. K said to schedule surgery.

 Tiger I drew with colored pencil for  stress relief. I ended up
giving it to my dad for Father's Day.

So March 24, 2010 I had surgery by Dr. K. He did a right shoulder arthroscopic synovectomy and extensive debridement, subacromial decompression, open anterior capsular shift for multidirectional instability and opened up the back of my shoulder to release the adhesions that had formed. But as the other doctor said, "There's nothing wrong." Good grief. Again, my surgeons wouldn't do surgery on me if they didn't feel it was necessary and I wouldn't allow them to do surgery on me if I didn't think it was necessary. They are very well accredited and top of the line in their fields. As my mother fondly says, "She didn't take me to monkeys."

 Still smile even when you feel awful! My hand is blue
because of the soap they used. I do not have
a circulatory issue.

 Incisions in the back

Advice: do your research and pick your doctors wisely. Don't be afraid to ask questions like where they went to school, how long they've been in their field, have you done this procedure before, what is the success rate etc. etc. You aren't always going to find the right physician for you on the first try. You have to have faith and trust in who you choose because it is your life they are dealing with at the end of the day. Do your homework.

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