I Wish I Had Eyes in the Back of My Head

I figured I should probably compose a present day update on here since it has been a while since I have written anything. May was a very busy month and rather stressful because I was going to be traveling to Boston, Massachusetts to meet with a new surgeon that I was referred to. At the beginning of the month my mom and I traveled to Nevada  to visit my grandparents. It was a very nice visit and the timing of going was perfect since I had my doctor appointment a week later. Going to Nevada was a great distraction and my whole body felt better from being in a climate with low humidity. I must say, it was very odd traveling without all of my medical records!

I loved the dry climate! The view is pretty good too.

My grandma; I definitely don't get my height from my mom's side of the family

My grandpa. We were eating lunch at this really good Chinese restaurant.
They had some pretty good sugar doughnuts. 

Once we returned home to Illinois it was time to switch gears and get ready for the doctor appointment in Boston. Fortunately all my records are pretty much together in binders so the packing aspect of things didn't take long at all. When it comes to getting ready to meet with a new doctor, it is more mental preparation for me; making sure I know what points I want to make, what questions I want to ask etc.

At the appointment with Dr. W it was decided the reverse shoulder replacement was NOT a good option for my right shoulder joint because my right shoulder blade is not moving properly at all and there is the fear that I will end up dislocating. It was made clear to me that you do not want to dislocate with the reverse replacement. The good news is Dr. W did propose an alternative option but before making an official plan of treatment he wants to contact my other doctors to get more of my history. The main goal at this point is to improve my quality of life by getting me in less pain and hopefully help me gain a little more motion to make me more functional. I am hoping to hear from somebody in the next week or so with how to proceed.

Where I met with the doctor

Since Dr. W did not need any further testing, my mom and I were able to take the next day and explore Boston a little bit. Boston is a very clean city and all the people we interacted with were very nice and had amazing accents. We took a trolley tour around the city and did a boat ride on the bay to see the skyline. We also ate at a food truck for the first time ever. It was pretty good too. We both had a barbecue pork sandwich and a side of corn bread. The owner had a sense of humor. He told me his sandwiches will make all my pain go away. I told him he should give me a lot then haha. My mom and I had a very nice day. Boston is one of those places that we want to go back to and visit because there is so much history and various sites that we didn't have time to see. I guess we are going to have to go back one of these days.

My mom and I 

Eating my sandwich. It was very
nice outside. 

Boston airport was unique compared to the other airports we have been too.
They have rocking chairs!

We've been home from Boston for almost 2 weeks. I've been thinking a lot about everything that was said in regards to my shoulders/shoulder blades and I feel like I am an ant at the base of Mt. Everest trying to climb to the top. There are so many issues that are wrong between nerve issues and all four joints that I don't even know what would be the best way to address things anymore. At my appointment I said we have to address my right side because it is worse but since the exam on my left side it has been hell. For the first time since 2012 my left shoulder blade is killing more than anything on my right side. Yesterday morning when I got up my scapulas were hurting me a lot. I was up the entire night from pain and not being able to get comfortable. I had my mom take a picture of me pushing against the wall because it is a type of test that is used and I knew something just didn't seem right. After seeing the picture, I wish I had eyes on the back of my head. I had no clue my shoulder blades looked like that when I push against the wall. It explains why I push doors with my feet, open doors with my feet, can't pour a half gallon of milk, can't wash my hair without bending over, and why I have lost a great deal of motion.

This picture is from Sept. 2013. Notice the right shoulder
blade is in a good position and is not sticking up. The
left shoulder blade is just protruding a bit at the bottom.
This was the mental image of what I've had in my head for
the past 8 months. 

May 2014. Looks much different compared to
September. There  are now two funky depressions
on the left which are either detached or loose
muscle attachments. The right one is now
protruding at the bottom and has its own depression.

Side view of my scaps. I have no clue what
will be done with them. I have to send an
email to my doctor next week. 

Now that I see what my shoulder blades looks like in the above picture, I feel like a complete idiot at my doctors appointment. I told Dr. W my right shoulder isn't in that bad of shape. Ha! Oh yes it is.

That's my motion when I try to raise
my arms up with my elbows bent. You
can see the left scap sticking out.

This is only how far my arms move in front of me. Pretty pathetic.
Everything I do in the day is all elbow motion. 

How my scaps look when trying to raise
my arms in front of me with elbows straight. 

So since yesterday morning I've pretty much been in shock over my scapulas. I do not understand why things have deteriorated the way they have in 8 months. In my emails to my doctors and other medical personnel I've been saying I'm getting worse and can't do so-and-so exercise but none of us knew this was going on with my shoulder blades. It is times like this where having your doctor is in a different state is huge downfall. Emails don't convey the true reality of a situation. 

http://www.pinterest.com/pin/486951778432190662/

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/