Scapular Muscle Reattachment Surgery

Just a heads up to those that are a bit on the squeamish side, there are 2 graphic pictures showing my shoulder blade during surgery. It is a picture of before and after the repair. 


The flight home from California wasn't as bad as I feared it would be. The Quadrilateral Space Decompression surgery honestly didn't really hurt that bad; I'm used to far worse that this surgery was a walk in the park. I only had to wear the brace full time for a week and during week two I could start weaning from it. The only time I had to wear it was when I was sleeping. Once we got home, I was back in school a few days later. I caught up really fast but unfortunately just about 2 months later I was informing my teachers once again that I would be missing school due to surgery and that I would miss 2 weeks of school right off the bat. As usual I got the looks of concern and the talk about how I might want to drop my classes. I pretty much laid it straight and told my teachers this was going to be my 19th surgery and I will get all my assignments/quizzes/tests all done on time. If I feel I am struggling, I will come to them and talk about it.

3 days after quadrilateral space decompression surgery

November 1, 2011 was not only surgery day for me, but it just so happened to be my mom's birthday too. Talk about a not so fun Happy Birthday Mom! Nothing like getting to spend your birthday in the hospital waiting for your daughter to come out of surgery and then you get to take care of her. My goodness did I feel guilty.

When it was time to go to the surgery center for surgery on my left scapula (shoulder blade) you have no idea how much I was absolutely dreading it. Even though there was a little bit of happiness to just get it done and over with, at the end of the day I just did not want to deal with recovery. This was the 4th surgery in 2011. The recovery is so hard, my body was tired, and I knew what I was getting myself into since I had just had this same exact surgery a year prior. The scapular muscle reattachment surgery with the muscle transfers are way more painful than the standard way. My entire torso has never hurt me that much before.

Once I was wheeled back to the operating room and scooted onto the operating table, I laid on my back and saw a white board on the wall. On the board were the names of all the patients for the day as well as what procedures they would be having done. I found my name at the top with left scapular muscle reattachment written next to it. I remember laying there thinking, "right now is the best I am going to feel for the next several weeks...ugh". Within the next few minutes the anesthesiologist came over by me and put a mask over my nose and mouth. At first I was breathing just pure oxygen but then all of a sudden I could smell the anesthetic that was going to put me to sleep. I hate that smell. The anesthesiologist then told me the same thing all of the other anesthesiologists say, "Take deep breaths. We are going to take good care of you. You have nothing to worry about." At that, I felt my eyes getting heavier and heavier. Surgery then began.

The white part is my scapula. There should be muscle attached there. 

Can't see my scapula anymore! YAY!

This surgery revealed that my rhomboid muscle and serratus anterior muscle transfer had in fact retore. Dr. B fixed this in the same fashion as he has done previously. Several sets of drill holes were made into my scapula and then a bunch of sutures were used to sew everything back to the bone. He also tweaked up the things he thought needed tweaking along the medial side of my scapula (closest to the spine). To this day it still boggles my mind that I managed to retear my muscles just because I became sick and was throwing up 11 months prior. When that happened I was 6 months out from having the same exact surgery. No wonder my shoulder blade was killing me like no other on that night. It also explains why I looked absolutely dreadful when we went to the emergency room. To this day, one of my biggest fears is throwing up just because of all the stress that would be put on my shoulder blades.

Once you come to in recovery it is not very fun. A lot of pain. 

This explains why it is not very fun and hurts a lot.
Every single time you sit or lay down you are putting
pressure on the incision and newly reattached muscles.

As much as this surgery is a pain to deal with, the good news is the days do go by and slowly but surely and the heavy, heavy pain will start to ease. Ice is your best friend for the first several weeks. It will help with the swelling and it gives a little relief. With the big bulky brace, honestly, it will be a love hate relationship. You hate it because it's big & bulky, hard to get comfortable, you have to sleep in it, and it's not the most attractive thing on the planet. At the same time you will love your brace. My two main reasons why I like it is one: it is a warning sign to others so they don't bump you and two your shoulder is so weak you will be thankful that you can let the brace do the work for you by supporting your arm.

As far as school goes, I did not end up dropping my classes. During recovery when I wasn't sleeping. I was attempting to do homework and study. It wasn't easy but in the end I managed to get an A in my statistics class and an A in my speech class. All the hard work paid off in the end and I was proud of myself. I also got lucky because my next surgery for my left shoulder ended up after the semester ended which meant no studying during recovery! Yay! That's always a plus. 

This scapular muscle reattachment surgery unfortunately is in my future again. I need to have it done on my left shoulder blade. Originally I was going to do it first but I've decided to postpone it because my right shoulder is trashed, not functional and a million times worse than my left. I can't imagine the shape my right arm would be in after being the dominant arm for a couple months. 

One of my friends sent me this quote and I think it is very true and a good note to end on: 

https://mail.google.com/mail/u/0/?ui=2&ik=148a0fdbb7&view=att&th=144dde3e66aa056b&attid=0.1&disp=emb&realattid=ii_144dde1ca74fda09&zw&atsh=1

The Gut Feeling is Back 2014

Isn't it interesting how some weeks of our lives you wish you could relieve over and over again, while there are others you just can't wait to end. For me, this past week started off really good but as the days went by things started going south. Sunday, Monday and Tuesday were a lot of fun. My nieces and I had a sleepover in my room where we shared stories and laughed. Since they were home from school due to the weather, my mom and I were able to do some fun stuff with them. We took them to see the movie Frozen and they helped out making homemade pizzas, tortilla soup, and cookies. Both my nieces are at the age where you can supervise and let them cook. They both learned there is a lot more that goes into cooking. It's not like we press a magic button and food magically appears on the table all prepared. We played games with them and it was just a nice, calm couple of days to spend time with them.

Then the middle of Monday night hit. It was a normal tossing and turning nights sleep. But for some reason I moved my right shoulder off my side and realized it moved higher than normal. I moved it again and the same thing happened. That's when I paid closer attention to how I was laying and realized I had just possibly made an important observation. I've been saying for several months my neck is hurting me. Everyone keeps telling me it is because of the muscle spasms that I get due to the muscles in my neck overcompensating for the ones in my shoulder. I know the muscle spasms are a contributing factor but I really don't think it is the underlying cause of the neck pain. I don't know how to explain it other than it's this gut feeling that I've had so many times over the past 8 years that I've learned to listen to.

As I watched the hours go by on the clock all I kept thinking was, "Come on! Be morning already. I have to show my parents my arm motion with my neck bent forward". I'm one of those people who can't turn their mind off when they think they've discovered something. I keep a notebook and pen on my nightstand and write down notes as I think of things throughout the night. It sounds kind of weird but a lot of times I have dreams of being at the doctors office and in my dream I'll ask a question that I should find the answer to. My brain is on the go 24/7 so I write things down so I don't forget. So come morning, I showed my motion.

In the pictures below you can see the difference between my motion with my head neutral and head bent. All motion increases (except flexion; not pictured) September 21, 2012 was the last time I was able to move my right shoulder that much without insanely sharp/stabbing pain over the front of my shoulder. It might not look like a lot of motion, but in my world it's a ton.

EXTERNAL ROTATION

EXTENSION

STANDING ABDUCTION

 

SIDE-LYING ABDUCTION

As you can see there is quite a difference in motion. Now the question is WHY? Honestly, I don't know. I've had no imaging of my neck so I don't know if there is any issue there. I'm seeing my physical therapist tomorrow to have him evaluate things. I already sent these pictures to my doctors and I'm waiting for a response. 

Then comes Wednesday January 29, 2014. Things were about to change; for the worse.  I was sitting on my bed coincidentally emailing my surgeons my questions about my motion and telling them I was considering postponing things on my left shoulder at this time and just focusing on the right. I was wearing a soft collar neck brace just to hold my head in a better position as I typed. My neck started getting stiff so I took the neck brace off. Then just like that for no apparent reason, I turned my head to the left, felting something odd at the base of my neck, followed by VERY sharp/stinging-like pain over the top inside portion of my left shoulder blade. I put the neck brace back on because I couldn't turn my head at all without this sharp pain. I couldn't bend over, bend to the side, sit comfortably or anything. The most comfortable position was laying on the floor, on my back and not moving. Originally I thought I pinched a nerve but as the day went on, the sharp/stinging pain I had began to subside. Instead of noticing the sharp pain, I realized there was a problem with my shoulder blade. It was sitting higher than usual and there was this depression/divot over the top portion of my incision. My gut feeling is my muscle ripped. I've had that sharp/stinging pain sensation before. The last time I had it was when I slipped down the stairs and retore my muscles off my shoulder blade.

My left shoulder blade (right side of picture due to the reflection in the mirror)
has a very apparent line at the top. This depression/divot has been there since Wednesday.
It is VERY tender to have pressure put on it. 

Left scapula is winging a lot more than normal. Before just the bottom used
to wing out. If you look at the top though, my scapula is winging up top too.
That's where I felt the sharp/stinging pain and where I think the tear happened. 

Thursday January 30, 2014 was rather uneventful. I had to take my muscle relaxants to try to get my muscles to calm down so my left shoulder blade would sink back into position. I called Dr. K's office but his clinics ended at 10am and I called at 11:15. Go figure, right! 

Friday January 31, 2014 rolls around and it was a long day from the get go. As soon as I opened my eyes I knew there was something going on with my right shoulder. I had a burning sensation up the right side of my neck and I was hurting more than usual. When I stood up I noticed my shoulder was subluxated out the front and I couldn't move my arm. It was locked. By 1:30 in the afternoon that day, I had subluxated 3 times simply by doing nothing; unless you consider waking up, flipping a pancake, or grabbing a cup as a reason to subluxate. After the third time, that was my cue to just sit all day with the heating pad on and not move my arm the rest of the day.  

Not a pleasant way to wake up. You can see my shoulder is sitting much higher
than it should. It's hard to describe the sensation that occurs when there is
all that pressure on a graft in the front of your shoulder doing its job by
preventing you from dislocating. 

My arm gets locked at this angle until my shoulder goes back into position.
It's definitely not the most attractive thing in the world.

At the end of a long week sometimes all you can do is be thankful that it's over and be hopeful that the following week will be better. I'm hopeful that this week I will get some questions answered and if anything be given some sort of guidance in which direction to move. Whether that be going for testing, meeting with a doctor, or staying on the same course of treatment. I still haven't gone for the botox injections. I'm still rather reluctant since nobody can give me a clear concise answer with what to expect. It's a hard scary decision to make when you know you already have an underlying connective tissue disorder. At the end of the day, I have to listen to this little voice inside my head that hasn't steered me wrong yet over all these years. It's important I listen to it because after all it's my body and I'm the one who is going to have deal with whatever happens to it at the end of the day.

Even though my shoulders are killing,
sometimes all you can do is smile, put on a brave face,
and believe you will get through this.

http://www.pinterest.com/pin/438467713693119213/ 

It's Official! A Diagnosis 2014

Where do I even begin? All the confusion, frustration, and wondering why all these years finally has an official answer. The emotions are all over the board. From happy to sad to angry. At the end of the day though, the most important thing is there is finally validation because on January 7, 2014 I was given a diagnosis.

How it all played out: 

In November 2013 for no apparent reason my hips started moving in ways they shouldn't. I told my mom about it but pretty much kept it to myself because even I didn't understand why it was happening. I was also noticing I was getting dizzy more frequently whenever I would go from sitting to standing, my heart rate seemed high, and my heart was beating fast. When these symptoms worsened I started questioning again if there is some underlying problem. I began to research and the next thing I know, I was reading about Joint Hypermobility Syndrome and it was like the last piece of the puzzle was finally put into its place. I emailed my medical team and was told if I wanted peace of mind I could see a geneticist to see if in fact this was the ultimate cause of all of my symptoms. The next day I made an appointment with a geneticist and my appointment was scheduled for February 14, 2014.

As I sat on the couch reading about this syndrome, I can't even convey the "Oh my gosh" feeling that gripped me. For seven very long years it has felt like I have been given jigsaw puzzle pieces one at a time and when put together there were still pieces missing and the whole picture wouldn't appear. I felt like nobody understood what was going on with me (except my immediate family) and I felt as though some  family/friends were distancing themselves for a reason I'm not sure of. Giving the benefit of the doubt, maybe it's just people not knowing what to say. I know I've changed the past year and a half. There have been a lot of big medical things between surgery and travel that have occurred. In a matter of 3 months I went from doing relatively well in Colorado to finding out I have bilateral nerve injuries, I need a reverse shoulder replacement, I need scapular muscle reattachment surgery, and I need Botox injections that I am not comfortable getting. That's a lot to wrap your mind around and learn to accept. If my head wasn't filled enough thinking about the upcoming plan of treatment, the more I researched on Joint Hypermobility Syndrome the more intrigued and certain I was that this is the answer I have been looking for to explain ALL of my symptoms.

Sunday, January 5, 2014 the state of Illinois was going to be getting severe subarctic temperatures to accompany the already 20 inches of snow we have on the ground. Schools and businesses were going to be closed the next day. People were being strongly advised to stay indoors. The wind chill temperature was -47 degrees Fahrenheit. Sunday night my mom says to me, "Heck, maybe there will be a cancellation at the geneticists' office tomorrow. You should call in the morning".

Lots of snow

The trees sure do look pretty covered in the snow

Monday, January 6, 2014: Lady Luck was on our side. At 9:00 in the morning I called the geneticist to see if they had a cancellation. The receptionist said, "Let me put you on hold one minute". My heart is beating fast as I am pacing back and forth waiting for her to come back on the line. She came back on the phone-line and said, "Can you be here at 10:30?" I replied, "Yes" and the mad-dash to get out the door officially begun. My mom and I were "running" around the house grabbing all the medical binders and information that we would need. It's a good my mom and I have adventurous souls because man was it cold outside!!! We carefully made our way to the doctor's office. My nerves were racing.

After meeting with the geneticist I was told she would get back to me in the next 2 weeks. Everything was definitely indicative of a connective tissue disorder. She needed to go do her research and go through my medical records to determine what type.

Tuesday, January, 7, 2014 I received an email in the evening from the doctor. I was officially diagnosed with Joint Hypermobility Syndrome (JHS)/Ehler-Danlos Syndrome-Hypermobility Type (EDS-HT). This is a genetic condition in which your body lacks the protein collagen. The type I have is not life threatening. This syndrome causes your muscles, ligaments, tendons etc. to be weak and prone to tearing. Since the tissue is weak it makes your joints prone to subluxations/dislocations. It can also effect other systems in your body. This diagnosis explains ALL my symptoms. From the loose joints to the dizziness. I will be seeing a doctor to determine if I have postural orthostatic tachycardia syndrome aka POTS. There is no cure for EDS-HT...today. My initial reaction was validation, anger, and sadness. How could I've been told this is ruled out and then be diagnosed 7 years later? The diagnosis of EDS-HT is huge. All of the protocols for bracing and rehab would have been different after all of these shoulder surgeries. Even though the proposed treatment plan doesn't change, there is so much weight lifted off my shoulders knowing there is a very valid reason why all of the surgery would last 3-4 months and then fail. I wasn't going crazy all of these years and I wasn't putting on some sort of "charade". The good news is starting today we can look forward and put a better plan into place to get me better. It just goes to show you, never give up and be persistent when it comes to your health. Thank you to those of you that I know and those of you who I don't for all of your support!!

Here is a link if you want to read more about joint hypermobility/EDS-HT: http://www.ednf.org/hypermobility-type

My niece Emily and I at Christmas

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

A Difficult Decision 2013

I can't believe it has been over a month since my last post. The past several weeks have been very busy and my life has been consumed with unexpected medical things. In the book Oh, the Places You'll Go! Dr. Seuss talks about a place called, "The Waiting Place" where people are just waiting. I feel like I live there. Lately I've been waiting for answers from doctors, waiting for test results, waiting for appointments, waiting for second and third opinions, waiting for an easy answer, waiting for someone to relate to, waiting for people who can relate, listen and understand what life altering decisions I have to make at 24. The list goes on and on. Just waiting doesn't sound like a big deal but depending on what you are waiting for, it is. It can be really stressful.

Let me catch you up on how I landed in "The Waiting Place". Up until August 9, 2013 my right shoulder was definitely being problematic but since that day it has made a major turn for the worse. At 3:30 in the morning, I woke up on my right shoulder and had this intense burning sensation going up the right side of my neck and over my shoulder. The pain was way worse than my usual "normal" pain. I knew my shoulder was sitting forward just by the sensation which made me hesitant to even move. Just trying to roll onto my back and get into an upright position caused the burning sensation to increase up my neck and cause pain across the upper right quadrant of my chest. When I finally got to my feet, I was hunchback, my right arm was really heavy and my muscles were in an insanely tight spasm. All I could think to do was go into my parent's room for help.

Immediately my parent's knew I was having a problem because I never walk into their room for help in the middle of the night. To their surprise, the pictures below is what they woke up to. There wasn't a ton they could do for me other than help me get propped on a ton of pillows, get the heating pad for me and get me my medications. My dad tried to massage some of the knots that had formed, but any pressure just made me feel worse. Going to an emergency room wasn't an option because ever since my last visit to the emergency room in September 2012 my motion has been very limited and I'm now scared it will get worse. Since September 2012, I am even more hesitant to go to anyone other than my physicians who I trust.   



Waking up like this is never pleasant. My arm was stuck in this position.
Putting a sling on wasn't helpful because I couldn't bring my arm in close
to my stomach.  



Side view

After this incident, my parents and I decided it was in my best interest to have the EMG test repeated in Colorado where the neurologist works with Dr. M. My EMG was scheduled for August 28, 2013. The day of the EMG couldn't come soon enough. Each day my motion became less, my pain increased, and I was less capable of doing my regular tasks on my own due primarily to the lack of motion. I have/had to wear the sling on my right side for extra support when I go out and about. I have had to sit and relax to get me through the rest of the day. When you combine all the issues I have going on my right side with the issues I have on my left side it makes it very difficult to do simple tasks. My "good" left shoulder has posterior instability and a possible muscle detachment at the bottom of my left scapula making it hard to wear a sling because of the pressure on top of my left shoulder. Wanting to be as independent as I possibly can, I can't begin to describe how hard it is when neither shoulder functions properly at all. All motions have to come from my elbows. Our flight to Colorado on the 27th couldn't come soon enough.

August 28, 2013 was the day we had all been looking forward to, to have the second opinion EMG test. This appointment was 100% different than what I experienced in Illinois. This doctor was extremely nice and was extremely thorough with the test. He tested my left arm first and I knew immediately he was doing the test correctly. Unlike the other doctor, this doctor tested the nerves in my hand, forearm, upper arm, shoulder and over my shoulder blades in both arms. With all of the various issues I have going on in each shoulder this test killed like no other. The neurologist knew it was severely hurting me and for the first time ever a doctor actually gave me an out and said I could come back at a later date to have the right side tested. I told him, "No. It's okay, I need the other side done more than I need my left so just finish the test." He then told me it's not okay with him how much I was hurting but proceeded on with the test like I had requested. I opted to have the test completed all at once because I was seeing Dr. M the next morning and needed to have the results. Out of all the doctors that I have seen over the years, this was one of the first doctors that has really looked at the big picture and acknowledged how all of these issues have literally put my life on pause. He is right.

 L. scapular winging just lifting my arm forward. 

 Something's not right.

L. scapular winging when I push the wall.

The next day I saw Dr. M in the morning. Compared to when I last saw him on July 2nd, the regression of my shoulders is mind-blowing to me. The first neurologist who said there wasn't a problem with my nerves and did the test wrong was completely incorrect about his assessment. The second EMG test showed there is an issue with my long thoracic nerve on both shoulders and an issue with my suprascapular nerve. So much for this being, "A strictly mechanical orthopedic issue." Besides the nerve issue, my motion sucks. My right shoulder is basically non-functional. I get my hair up by bending over. Get dressed by bending over. Wash/dry my hair bending over. Climb on chairs to reach things out of cabinets. It is annoying and drives me nuts. Dr. M ordered X-Rays which showed I have no joint space in my right shoulder which means when I move, my motion is bone on bone. To further assess it an MRI was ordered for the next day. Someone would call me the following week with results.

The chart below compares the motion I had on each shoulder July 2nd and what I have now.
 

	R. Shoulder 7/2/13	R. Shoulder 8/29/13	L Shoulder 7/2/13	L Shoulder 8/29/13
Forward Flexion (moving arm in front of you)	20 degrees	5 degrees	90 degrees	60 degrees
Abduction (moving arm away from your side)	30 degrees
External Rotation	20 degrees	0 degrees		20 degrees

Unfortunately it was a holiday weekend so it was an extended wait for the results of my MRI. To distract our minds my mom and I would play cards outside by the pool, go for short walks through the village, sit on a bench listening to the water rushing through the stream and watch the squirrels harvest to prepare for winter. We also went on a few car rides.

My mom and I were going to go to the Continental Divide

but we couldn't because we couldn't see the mountains

 clearly due to the storm clouds that had rolled in. 

This is Gore Creek. It runs through Vail Valley. When we

left the first week of July all of these rocks were submerged

under the water. 

The results are in. I talked to Dr. M on the telephone the following week. He could not have been nicer. I think this was the first time he actually "met" me because it was strictly a one on one conversation and I didn't have 4 other pairs of eyes staring at me as I tried to explain my symptoms. The main showing on the MRI of my right shoulder is the arthritis has progressed since April. It also shows thinning, fraying, fissuring, swelling and is basically just a mess to sum it up. I have diffuse grade 3 arthritis on the glenoid (socket) and diffuse grade 3 and 4 on the humeral head (ball). The only recommendation that was offered is a reverse total shoulder replacement. This procedure is typically done in the elderly. They consider patients who are 50 years old as young candidates who have the procedure done. I am 24. Dr. M told me I am so young to have to need such an operation. I agree with Dr. M; however, like I told him, I am young but my shoulder is not. My shoulder is non-functional. I know I will never have a normal shoulder but I do know this shoulder has the potential to be more functional than what it is now.  

Right now I am kind of in a holding pattern. I don't want to jump into anything to quickly without really thinking things through. The reverse shoulder replacement would permanently alter my anatomy. I am not having my procedure done in Texas but here's a basic link that describes the procedure; (it is strictly animation pictures/video) http://www.methodistorthopedics.com/reverse-shoulder-arthroplasty At the end of the day this is a big decision that I have to make. If anyone has had this procedure done, I would love to hear your feedback on it.

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

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. 

Scapular Pain Validation

August 2007

Words can't explain how happy I was to be home and out of the pain program; even though I met other patients that were great, I couldn't wait to get out of there. I was around the people that loved me the most...my family. They all believed me and knew that there was a problem. At home though, the mind games started to get a hold of me. I would think, "Maybe the pain clinic was right and there is nothing wrong with my shoulder blades. Maybe I am stuck like this and have to learn to accept the condition of my shoulders. Maybe this is all in my head and I am overreacting." When these thoughts would enter my mind, I would have to prove to myself that there was still a problem and that I wasn't crazy. I would try doing the various exercises that the pain clinic had me do or I would  try getting dressed the way normal people do. The way I got dressed was bending over at the waist and keeping my arms close to my side in order to get a shirt on. It's like I needed to feel the sharp pains in my scapulas to prove to myself there was still a problem. From hearing the staff at the pain clinic in Minnesota telling me over and over again, that there is nothing wrong with my shoulder blades instilled so much self-doubt. I went into the clinic with confidence and walked out without the confidence I once had in myself and knowing what I was feeling.

The orthopedic Dr. S from Minnesota gave me two suggestions for treatment. The first, wait 3 years for technology to advance or two, go to Kentucky to see Dr. B the "Scapular Guru". Waiting 3 years was NOT an option. On the other hand though, I did not want to go to Kentucky either. The pain clinic caused me to be fearful of new doctors because I was afraid they too would tell me there is nothing wrong with me, or they would yank my arms above my head, or they would disregard everything I was saying. We already had an appointment set to see Dr. B at the end of August 2007 but my parents brought me to see Dr. K first who fixed my knee and hips to see what his opinion was.

When I saw Dr. K, I asked him if he would do surgery. I was in so much pain and so limited in my motion that I wanted somebody qualified that I trusted to do surgery and look. At the appointment with Dr. K I made it very clear that I didn't want to go see Dr. B. I asked him if he could just do surgery and cut over my shoulder blades where I was having the pain. I already knew the answer was going to be no, but I knew something was wrong and at this point Dr. K was the only doctor that I trusted. Dr. K looked at my parents and said, "She doesn't want to go to KY." My mom said, "I don't care. We were given two options. Either wait 3 years or go to Kentucky." Dr. K then looked at me, and said, "Would you please go to Kentucky to see this one doctor." I huffed and said, "Fine."

When you live with pain and limitations of your body, sometimes it is just so hard to be reasonable and cooperative. You can't always wrap your head around what is best for you. I had just finished seeing more doctors in a month than I had seen my whole life. I came out of Minnesota more fragile than I went in, and the idea of seeing another doctor was just horrifying to me.

So here we go. Time for a 9 hour drive to Lexington, Kentucky with my parents...

August 24, 2007: If I had to put a number on my nerves the day I saw Dr. B on a scale from 1-10, 1 being no nerves, 10 being a lot, I was an easy 20. I was terrified. My heart was racing and I felt like I was going to cry any minute. The nurse called my name and my parents and I walked back and waited in the exam room. I sat in the chair next to my mom and couldn't stop fidgeting. There was a knock on the door. In my head I'm thinking, "Oh no, it's time. Here comes the "Scapular Guru"." I nudged my mom with my knee and whispered, "Here we go, here comes Dr. Arrogant." Then I was thrown for a loop. Dr. B walked in and said, "Howdy, howdy ho. I'm Dr. B. How are ya'll doing?" I looked at my mom with wide eyes because here was this super-specialist recommended by Dr. S in Minnesota and he was so friendly and nice. I was expecting, a very arrogant person. What a nice surprise!

Dr. B sat down and we chatted about my history. He made me feel very comfortable with him. I actually had trust in this doctor. It was now time for the part I was dreading most...the shoulder blade exam. Dr. B had me stand up with my back facing him. He asked me to show him how much motion I had. While I moved my arms his attention was strictly on my shoulder blades. He pushed in certain spots to determine where I was having the most pain but he never once yanked my arms over my head. After a 5 minute examination, Dr. B said I could sit back down. He looked at my parents and I, and said, "I know what's wrong; the muscles are detached from both of your shoulder blades." My parents and I sat there shocked. I was stunned and I know my eyes opened up wide. This moment was very emotional for both my parents and myself. You might think that we would be sad to hear that I needed not one, but two surgeries, but really we felt so much relief in knowing that there was damage because it validated everything I was telling the medical professionals in Minnesota over the past month. Dr. B informed us that scapular muscle detachment injuries do not show up on imaging. This explained why all of my MRI, CT, EMG and a bunch of other tests all came back normal. The main thought going through my head was, "Thank God I listened to my body and refused to play volleyball at the pain clinic. All those doctors, nurses, and physical therapists at the pain clinic that told me there is nothing wrong with my shoulder blades were just proven wrong."

Before I could even have surgery to reattach the muscles to my scapula, Dr. B said I needed to go for massage therapy. This was because the muscles throughout my upper back and neck were so extremely tight that if he were to do the surgery immediately, it wouldn't work because the tissue wasn't pliable. His biggest concern was that if the muscles weren't relaxed and he did surgery, the tight muscles would contract causing the work he did to retear. That issue would be addressed when we got back to IL. We stayed a few extra days in Kentucky to have some fun. Over the years, one of our philosophies has been to incorporate fun on the days that there are doctor appointments, or tests, or you get bad news. If we didn't incorporate fun, I don't know how we would have gotten through all these years.

The best, most supportive parents I could have ever asked for.

Having fun at the Kentucky Horse Park after seeing Dr. B

At Keeneland Horse Track. It was such a HOT

day; there was zero shade and it was 90 degrees out.
Too bad we didn't win any money at the track.

I was so humiliated taking this picture. There is a

busy street like 10 feet away from where I was

standing and my mom insisted on me taking a picture

with "Big Boy" because it would make a good memory.

She was right.

After returning home from Kentucky, I made an appointment with an advisor at a community college to see if it was too late to sign up for classes. The classes that I needed were already filled so I took fall semester 2007 off from school. That same week, massage therapy started. I went 3 times a week for 2 months; it was anything but relaxing. The therapist had to massage the muscles that were detached as well as the surrounding muscles. It was terrible, awful, pain. Sessions were only about 15-20 minutes but they seemed so much longer than that. Trying to lay still so the therapist could do his job was so hard to do. I laid there face down quietly, with tears coming out of my eyes. It was such a long 2 months. However, all the pain and agony was worth it in the end. When I followed up with Dr. B 6 weeks later, I got the thumbs up to schedule surgery.

You still have to have fun even when you hurt. My favorite

 holiday is Halloween so I dressed up as Cinderella and my niece

was Alice from Alice and Wonderland. 

November 6, 2007 I had left scapular muscle reattachment surgery. 3 sets of drill holes were made into my scapula and Dr. B used sutures to reattach my lower trapezius muscle and rhomboids. You wake up feeling like you were hit by a truck. My parents and I lived in a hotel for a week so I could recover and get over the hump. After a week, it was time for the 9 hour drive home. It was the longest car ride ever. You hurt from the surgery, you're nauseous from the pain and on top of it, the roads are bumpy because there is road construction.

The muscle detachment. That white part is my scapula.

You shouldn't be able to see that.

After surgery. Yay! You can't see my scapula anymore.

I wore a sling for about 6 weeks. During those 6 weeks, you keep plugging along and take it day by day even though it's hard. There is a light at the end of the tunnel; sometimes you have to go through standardized protocal in order to get where you need to be. In my case, I had to go through the pain program to get back to orthopedics, to get the name of the super-specialist. Imagine if I hadn't listened to my body and listened to the pain clinic. You should read the blog "Come on Mom, Let's Go Have a Little Fun" because now you know what damage there was within both of my shoulder blades. When you read it, you will see that it wasn't a matter of a lack of effort or trying to be difficult, uncooperative or disruptive. I repeatedly told them there was something seriously wrong. I physically couldn't do the motions or exercises they wanted me to perform...they just didn't want to listen.



 Less than 3 months after being dismissed from the pain clinic
 I had surgery. You can see there is something obviously
 wrong on my right side ("chicken wing"). My left side looked
 worse than my right side before surgery. The pain clinic saw it.
They still said, "Nothing is wrong."