Colorado PT 2013: Part 3

As the weeks of being in Colorado started coming to an end, I started becoming more concerned because I knew I would be heading back to Illinois soon. It sounds selfish, but the time I spent in Colorado was the best thing for me. For the first time in a number of years, I could strictly focus on my shoulders and trying to get better. I could go to physical therapy and chill out afterwards without feeling guilty. It was great. Neither one of my shoulders are in the shape that I was hoping they would be in. Of course I'm happy I have more strength but from a functionality standpoint, I didn't improve that much. If I said I wasn't disappointed, that would be a flat out lie. Having these complicated shoulder/shoulder blade issues is a lot harder than it comes across in a blog. Every single day brings about its own challenges and some days are a lot worse than others. I've been working at getting these shoulders better since 2007 and it is very tiring. Over the past several years I've been working hard trying to stay in the best shape I possibly can so it doesn't look like there is a problem with me. I've learned to move about effortlessly using strictly elbow motion and have learned to "hide" the pain I'm feeling from family/friends. As my mother says, I am a "Master Illusionist." Drawing continues to be the main outlet I use so all of the aggravation and stress I feel doesn't build up inside. While I was in Colorado, I redrew the tiger that I gave away to one of my surgeons as a thank you gift.

I usually do not draw the same picture twice but
my parents really liked this one, so I drew it again
in Colorado with colored pencil.

Tuesday July 2, 2013 was doctor day. It was my last week of being in Colorado before heading home. When Dr. M came in the room, he asked how things were going. I told him my strength has increased, I'm more aware of my shoulder positioning, but I haven't gained in my motion. I also told him that my left shoulder is getting progressively worse and is subluxating posteriorly. In addition to giving him a shoulder update, I told him I didn't regret having the invasive stabilization procedure that was done in Nov. 2012. In April, Dr. M asked if I regretted having the Nov. surgery and I told him I wasn't sure. Over the course of the 8 weeks in CO, I realized the Nov. surgery is doing exactly what it's supposed to do and thank God for that graft. Every single time my nerve gets flared up, my muscles tighten so bad in the front of my shoulder and you can see the humeral head being pulled forward. If it weren't for the graft, I am positive I would have subluxated or dislocated at this point. The graft in my shoulder has been working hard and doing its job; preventing my shoulder from dislocating. I told Dr. M I think there is a separate issue going on. He then asked if something occurred before my Nov 2012 surgery and I told him yes. On September 23, 2012 my shoulder dislocated and the shoulder reduction at the emergency room was the worst reduction I have ever experienced. The morning of September 23rd I had motion to almost shoulder level. Ever since my shoulder was reduced I've had minimal. Originally I thought it was due to the instability because that is what the previous patterns have been; however, the instability was corrected in November. I have done several months of physical therapy since then with gains in strength but no gains in motion. So I think something isn't adding up. Dr. M then came by me to examine both of my shoulders.

My evil right shoulder was up first. Dr. M gently grasped my forearm and shoulder. He then tried to bring my arm forward. In order to get a full assessment, Dr. M has to move my arm past my comfort zone. Since I am not one to cry or verbally say, "Ouch" I went up on my tippy toes and tried to walk away because my shoulder was killing. Dr. M was still holding onto my arm so I never actually got away from him. He then examined my external rotation. As he moved my arm, the entire room could hear the very audible crunching/grinding that was occurring in my shoulder. You can only imagine how loud the crunching/grinding is for me when that noise is occurring directly below my right ear. That sound makes me absolutely crazy. It is nauseating and irritating. That noise is one of the things that bothers me the most because it is another daily reminder that my shoulder is trashed.

Next up was my left shoulder. Dr. M grasped my forearm and shoulder the same way he had on my right. He tried to bring my arm forward. As he was moving my arm up, I could feel a lot of pressure building up in the back of my shoulder joint. Before I had the chance to say, "My shoulder is going to subluxate" my shoulder had already done so. When Dr. M moved my arm the opposite direction, the ball clunked back into its proper position. Dr. M then tried putting more manual pressure on the back of my shoulder to stabilize it, but as he moved me forward the same exact thing happened again. Never a good thing. Dr. M sent me for X-rays of both shoulders.

After I had my X-rays done I went back to the room and started pacing back and forth. When I am in severe pain, this is just something that I do. I can't sit still. I'm not one to scream and yell so I stick to pacing. My right shoulder was not sitting properly at all. I felt like my right side was hunchback. My shoulder was being pulled way forward and everything was screaming. It took everything within me to stay composed. My elbow was bent at an odd angle; I was not able to straighten it at all. Every muscle in my right upper quadrant was in spasm. It killed. My therapist came into the room. He looked at me and knew something was wrong right away; he has never seen me react to pain in this way. He talked me into laying down on my back propped up with a pillow so my muscles would hopefully relax. Shortly thereafter, Dr. M came back into the room. Dr. M tried moving my shoulder and told me to try to relax. I looked him in the eyes and said, "I am relaxing. I have no control over this. This is what happens at therapy when we work the nerve." Dr. M put my arm back down and sat down next to my mom. I sat up and waited to hear what I'm supposed to do next. Dr. M told me my right shoulder is sitting up higher than it should. He suggested that I have an EMG (type of nerve test where they stick you with needles and send a little shock to check your nerves) done on both shoulders and to include the brachial plexus branches. Until then, I should continue my physical therapy workouts at home. This is one of the main reasons why I did not want to come back home to Illinois. There are still problems with my shoulders to figure out. When the doctor appointment ended, I went down to the physical therapy clinic and my therapist worked on trying to get my right shoulder to relax.

July 16, 2013: One week after I got home from Colorado I had the EMG test done. I went back to the same individual that did my EMG in 2010 because he was thorough and nice. When I went back the second time around, it was like seeing a completely different individual. As soon as I said the order was from Dr. M in Colorado it was like the doctor didn't even want to be involved. There was no history taken, he did not ask my symptoms, he did not examine my motion. I filled out zero paperwork. He did the most basic EMG test possible. I was told, "Everything is completely normal and this is strictly a mechanical orthopedic issue." Since the test was not thorough, I am opting to go for a second opinion and have the test redone by a different physician because I don't trust the first doctor's impression. It would be a lot easier if doctor's would tell me they do not want to be involved in my case rather than make me go through an uncomfortable test and deal with the way my shoulders will react to it.

Ever since one of the needles used to have the EMG done

was stuck in my rhomboid muscle, I have had scapular winging.

My motion has decreased in my left shoulder, I wing out more

than normal and I have had more posterior (back) joint pain.

My motion has even declined in my right shoulder. I didn't

think it was that possible considering I didn't have that much

to begin with. I was obviously proven wrong. 

It's ridiculous and nerve-wracking to have to go for an EMG a second time; especially knowing how my shoulders reacted to the most basic EMG possible. It is going to be a handful. I would so much rather prefer doctors to be honest with me rather than give me a bogus exam where I have to go have it done again. During the first EMG the physician didn't do the "shock" aspect of the test so I'm sure my shoulders are not going to like that at all. The past week has been very difficult because my motion has decreased even more, my pain level has increased, my right side is crunching and shifting when I move, I've needed to wear the sling on and off to help my right shoulder but it aggravates my left shoulder. All I can do at this point is take it easy, wear the sling as needed to calm down my right side, cross my fingers that things go back to "normal," and take things one day at a time. Hopefully the second doctor who does my EMG will be much better than the first one.

At the lake with our family dog Daisy waiting for the annual

parade to start that is held every year in our community. Timing is

everything; Daisy was in the middle of licking her nose when

 the picture was snapped. Her tongue doesn't usually

 stick out like that.

 

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

Colorado PT 2013: Part 2 Thank God for Hockey!!

Thank God for hockey! Hockey gave me something to look forward to a few times a week and it completely got my mind off of all the medical stuff for a few hours. The hockey playoff season started right before my mom and I started the drive to Colorado in May, and ended June 24th; the day before my birthday. While in Colorado, my mom ordered Lou Malnati's deep dish pizza and had it shipped to us. During the playoffs, we would bake one of the pizzas and root on our Chicago Blackhawks. Anyone that knows me knows I love hockey and I love the Chicago Blackhawks. At physical therapy it didn't take them long to discover this about me. Before leaving for Colorado I painted a Blackhawk on a tank-top so I could wear it to pt proudly. This year was the most fun I have ever had watching the playoffs. There was healthy, friendly banter amongst myself and some of the other therapists which made the atmosphere at therapy fun. Early on I learned my one physical therapist is a Boston Bruins fan. Because of this, I had my fingers crossed the Bruins and the Blackhawks would face each other in the finals. Fortunately both teams made it to the finals. Let the friendly trash-talk begin! It was so much fun. On June 24th the Blackhawks beat the Bruins and took home the Stanley Cup. When I walked to therapy the next day, I walked in with my #10 Patrick Sharp jersey on and had my therapist take a picture with me. It would have been SO hard walking into therapy if the Bruins won the cup. I can only imagine all the crap I would have heard :)

As therapy continued over the course of the next few weeks, we incorporated exercises that concentrated on trying to retrain my shoulder blades to move in the proper direction. They are difficult because I can't feel my shoulder blades moving where they are supposed to. It was/is very aggravating at times because I mentally understand exactly what my therapists are asking me to do with my shoulder blades but I can't physically execute it. It is also aggravating because what I have to do to help my shoulder blades does not feel well in the back of my left shoulder joint. It's back to that saying, "Stuck between a rock and a hard place". When I arrived to pt in May the back of my left shoulder was giving me trouble but as the weeks have gone by the posterior instability has become more apparent. As long as I keep my left arm relatively close to my body there isn't an issue but as soon as I move away from my body things start to shift.

Short little clip showing left posterior instability

Even though pt had its serious moments, the funny moments far outweighed them. It was good to see the CO therapists I worked with all had a sense of humor like my IL therapist. If I have to go to pt anyways, it may as well be fun. In the past I've been to therapists who make zero conversation and it's strictly "Go do 10 of this exercise and then go do 15 of that exercise." Those types of therapists make the appointments seem forever. Having humor is a good distraction tool while you're doing the exercises; especially when they hurt.

Top 10 fun moments in pt:
1.) Being taught how to say certain words with a Boston accent
2.) Getting one of my therapists on my side to root for the Chicago Blackhawks
3.) Having my Bruins fan therapist take a picture with me in my Blackhawks jersey on my birthday
4.) Laying on my stomach and having my therapist take a picture of my shoulder blades with an "easy button" on my back. Another words, if you have complicated shoulder blades just get yourself an easy button.
5.) There is one exercise where I am on my hands and knees. I have each hand on a towel and I have to slide each arm forward one at a time. We were joking around how I could clean the table doing this exercise. My therapist went to the back and had one of the aids grab some Windex Antibacterial spray. While my therapist was taking a video of me doing the exercise, he had the aid spray some Windex on the table in front of my hands and I cleaned the table while doing the exercise.
6.) Having my therapist wear his "Watch out for the crunchies" t-shirt during my pt session and taking my picture with him.
7.) There is another exercise where I am on my hands and knees. My therapist taps my sides trying to throw me off-balance and I have to hold myself up. It is now referred to as "Cow Tipping"
8.) Being asked by one of my therapists where I am from. I said, Illinois. She then asked if I have always lived there. I replied, yes. She then said, "Really? I thought you were from somewhere south because I hear a southern accent when you talk." I laughed and then explained from all the years of traveling back and forth to Kentucky I picked up the accent.
9.) As little motion that I have when I am standing, it is the exact opposite when I am bending over. My arms go to shoulder level when I am bent over. So, we came up with the idea that I should set my house up like in Mission Impossible so I could hang from the ceiling and cook dinner and be able to do more activities. You have to admit, it would be amazing if I were actually able to make this happen.
10.) Getting to know the therapists who have been working so hard trying to help me.

Me with my Bruins fan physical therapist

 Me with the therapist who started to root for the Blackhawks for me; such a smart guy :)





Me with my only female therapist I worked with; she gave me a break from the boys :)

On the last day of pt my therapists said the next time they see

me they want me to be able to get my arms up high enough to

give them "bunny ears". I told them we can do that now as long

as they squat down in front of me.

Even though I didn't make huge gains in my motion at physical therapy I don't regret spending the time I did there for an instant. There were a lot of discoveries that were made with my shoulders which gave us a starting point. This is huge; everyone has to start somewhere. My strength has increased even though I still have a long ways to go. I am more aware of my posture and making sure my shoulders are in the correct position before I move. I am able to do some of my exercises on my own without manual assistance. Some people may feel really mad/aggravated towards their therapists because they just put all this time and effort into working on improving their motion and didn't gain as much as they had hoped. I am not mad/aggravated at any one of them in the least. They have all put so much time and effort into my care and I realize I am a very complicated case. There is a major difference between being mad/aggravated at those trying to help you and being mad/aggravated at the situation. I am mad/aggravated at my situation.

 It doesn't look like much but my external rotation on my

right shoulder (left side of pic) did increase.

Ohhh flexion you are a whole different issue. We are still working on that. 

Abduction increased on my right shoulder (left side of pic) and

has decreased on my left shoulder (right side of pic). So we

are still working on this.

I have to break this post into a Colorado PT 2013: Part 3. Our time in Colorado was coming to an end. Before I could leave, I had an evaluation appointment with Dr. M. At this appointment, the evil beast that lives in my shoulder raised its ugly head to show my doctor. Thank God... 



Colorado PT 2013: Part 1

Oh my gosh, two months in Colorado was one of the most difficult but one of the most awesome times of my life! The car ride with my mom was certainly a memorable one. My mom has dubbed it the "Girls Go Wild, Wild West Trip". We had music blasting and talked about so many random things. On our drive we spotted the "World's Largest Truck Stop", a random dinosaur statue on the side of a road in Nebraska, we discovered the rest stops in Iowa only have bathroom stalls about 5 feet tall (not a good discovery when you're 6'). After this discovery, I couldn't go into the bathroom without feeling like a perv, so I avoided them haha. The drive itself wasn't as bad as we had heard. Spring was in bloom and the shades of green were beautiful. It was a very exciting moment when we spotted the Rocky Mountains in the distance. This meant we were getting closer to our destination. My mom and I both feel like we had someone watching over us on our drive because once we got to our condo in Colorado, for the next several weeks, the Midwest got tons of rain and a lot of bad storms right where we were driving. We are both very thankful we passed all of the bad weather and got to Colorado safely.

Couldn't resist not taking a picture with the height of the bathroom stall.
There was nobody in the bathroom when we took this picture.

View of the mountains when we got to Denver, Colorado

The time in Colorado was the best and the worst gift I have been given. It has been dubbed the two months of observations and discovery. I am so thankful for the time I got to spend there. It is so hard to believe that my two months there has come to an end. It was the best gift because I know there are a team of medical professionals who can help me. It's the worst gift because now that I am back home in Illinois, I'm trying to figure out a way to get back out to Colorado for good. In the mountains where my mom and I were at, there is no humidity. I felt so much better there.  It is so hard being back in crazy humid IL when you know just a few states over that could be avoided and you know your medical team is there. I think going to CO is one of the best decisions I have made from a medical standpoint. The staff is great at the hospital/clinic and they all stay in contact with one another very well from a communication standpoint. Besides my mom, my therapists were the only people I really interacted with for 8 weeks, 5 days a week, 2 times a day. The relationships that I made with them far exceeded anything I ever expected; it feels like I have known them for a very long time.

Going into physical therapy (pt), I knew my shoulder situation was quite complicated, but as the weeks went on, I learned they are much more complicated than I even realized. The first few weeks of pt involved my therapists making close observations assessing my shoulders and kind of learning what my shoulders/scapulas do when I try to move. Quite frankly, it was a lot of trial and error on many levels (exercises, body positioning, motions etc.) to see what worked well and what didn't. When certain exercises didn't work, my therapists would think of different ways to modify them to my bodies needs. Part of my issue is my lack of strength around my shoulders and shoulder blades. Since my muscles are rather weak, especially on my right shoulder, the ball of the shoulder doesn't sit in a good position. This lack of good positioning caused a great deal of crunching/grinding, shifting sensation and pain. To help with the positioning, my therapists would physically hold my shoulder in the correct position while I worked out. Over the next few weeks, I learned where that good position was and was able to workout without them holding my shoulder in place.

 



So every time my right shoulder would crunch a lot, my

one therapist would always say, "Watch out for the crunchies"

I told him I should get a shirt and paint Captain Crunch

on it with the quote. I guess you could say it

became our "team motto".

About 3 weeks in pt a couple discoveries started to come to the surface. The first one was when I was laying on my back and my therapist was stretching my neck. When he stretched my neck towards my left shoulder, the front of my right shoulder started to spasm and the "ball" of the my shoulder started to be pulled forward. We taped it back into its proper position and I wore a sling the rest of the day so it could calm down. We now know this occurrence was the very first sign that something else was not quite right. On Saturday, which was a couple days later, while working with my other physical therapist, we were working on what is called nerve gliding. I've been told to think of it like flossing your teeth. The therapist works the nerve to try to get it to glide smoothly as the arm is moved. Later that day I started having pain up the side of my right neck, and the front of my right shoulder was in spasm. When I woke up Monday morning, the pain was worse up my neck and into my jaw. Eating breakfast was challenging because it was difficult to open my mouth. My neck motion was very limited and my shoulder was still in spasm pulling it forward. For the next two days at therapy, my therapists did soft tissue work and worked on trying to get everything to relax. Luckily by Wednesday, my shoulder was back to "normal". We learned what to avoid when doing nerve gliding.

Discovery number 2 was when my therapist noticed my shoulder blades move the wrong direction. When I move my arms in front of me, the bottom of my shoulder blades move in towards my spine instead of moving out to the side. Now, how the heck did that happen without me being aware or being able to feel this? Wouldn't you think it would feel weird? It didn't and it doesn't. This is my bodies "new normal" movement pattern. I have no clue how long my shoulder blades have been moving this way. You have to keep in mind I have had numerous muscle reattachment surgeries on my on my shoulder blades and certain muscles were moved to areas where they aren't necessarily supposed to be. This motion discovery meant we had a starting point of where we could begin to try to correct things. In my opinion, you "normal" people move really, really weird haha. When my therapists physically move my shoulder blades in the correct position when I move, it feels so wrong to me. It is unnatural, awkward, weird and the sensation is very similar to when my shoulder blades would wing like a chicken. It has and still continues to be a challenging obstacle we are working on correcting.

Short video showing the motion of my right scapula when I move

Between physical therapy sessions, my mom and I kept on living our philosophy: incorporate fun. We would go for walks on the trails along the streams, eat lunch outside amongst all of the trees, go for drives taking in the scenery, and sit by the pool talking to people. If we didn't do any of these things I know we both would have started to lose our minds. Colorado is too pretty to just sit inside and waste away the day. Even when I didn't feel well after some therapy sessions, we could walk a short little distance and relax on a bench listening to our natural surroundings. Everyday was like an adventure. We never really knew what we were going to do or what we would see. It kept things exciting and fun.

My mom and I eating lunch outside rooftop with the mountains in the background

I have to break this Colorado PT 2013 into a couple parts because there is too much information to cram all into one post. Over the course of the next several weeks, my strength increased. Yay! Since my strength increased, we were able to slowly start progressing onto exercises that involved trying to increase my motion. This increase in motion brought more issues to the surface...