Sunday, June 22, 2014

4 Months of Hope

March 2012

When you're healthy there is so much that you do in a day that you take for granted. Before I became injured at 16, I woke up in the mornings feeling refreshed and ready to tackle whatever the day brought. It wasn't until the past several years that my mom saying in the mornings, "I need my cup of coffee first and time to come into my body" even made any sense to me. I assumed everyone woke up feeling great and ready to go; boy was I wrong! Life threw me a curve ball and I learned first hand that my desire to do many things is there but bodies are stupid sometimes and don't always cooperate.

Sometimes life throws you in a cycle that you didn't even realize was occurring until you are well into it. You look back on the your experiences and you realize that your life has been anything but normal and you wonder how the heck you survived it all. For me, I was 22 and I still didn't have a drivers license, I wasn't working, and I wasn't on the "4 year college plan". Yes I had 2 associates degrees but I still wasn't able to transfer into a 4 year school to get my bachelors. Though, after the last surgery on my right shoulder in March 2012, for the first time in years I had so much hope that I could finally spread my wings and pursue some of my dreams.
Now that the shoulder surgery was done the rehabilitation process on both shoulders/scapulas could begin. There is a lot of work that goes into this when your shoulder girdle hasn't been functioning properly for a long time. As the weeks and months went on, my strength and range of motion increased. It was incredibly weird to have shoulders that actually felt halfway "normal". At my best in pt I was doing 8 lb weights, my motion was just about to shoulder level, I was able to do scapular exercises with resisted weight, and a bunch of other exercises that I hadn't been able to do in the past; it was like a whole new world of exciting shoulder exercises had been opened up for me.

In addition to all the fun shoulder exercises, I was able to regain the ability to draw again with some modifying. I couldn't draw on a table but I could sit on the couch propped up and draw in my lap. Before my surgery I had started working on a tiger picture for my mom for Mother's Day but once surgery happened I had to put it to the side since I'm right handed. Fortunately I was able to finish the tiger on Mother's Day; talk about cutting it close (I'm sure she would have forgiven me if it weren't done in time; she's nice like that).

As things progressed in a positive direction, I felt like I could try to start planning for the future. It was very odd feeling healthy and unhindered; it was so foreign to me that it made it scary. Don't get me wrong, I was happy to feel good but it just goes to show you how when you've been in a cycle of having illness/injury take over your life you have to basically relearn how to live like a "healthy" person. All of a sudden I had the ability to make choices for the future and I didn't have to revolve my decisions around surgery. Heck, what a concept!

Come May 2012, I was feeling so good that the thought of maybe being able to finally get my drivers license in the Fall had even crossed my mind. I decided to finally apply to be a camp counselor at a burn camp for kids that would start in August which was something I had wanted to do since 2008 but was never physically in a position to do so. I also scheduled to meet with an advisor at the University of Illinois-Chicago on May 31st to see about applying for their Kinesiology program. This was the first four year school that I actually went to visit since graduating high school in 2007.

Before going to meet with the college adviser, I had to meet with Dr. K on May 24th to check my shoulder for a standard follow-up. As usual my mom came with me and it's a good thing she did because we ended up sitting in the exam room for 2 hours. It got to the point where we were feeling caged in and getting rather giddy. For entertainment, I decided to sit on Dr. K's chair with wheels and push myself across the floor with my feet, my mom and I ended up playing the children's game "I Spy" and then we had the brilliant idea to blow up a glove into a "chicken balloon". I asked my mom if she had a pen and she did. I drew a little face on the glove and then my mom said we should write, "Have a nice day -Bon Jovi" and hide it in the corner next to the sink. So we did...why wouldn't we?

When Dr. K walked into the room he walked
walked over to the sink to wash his hands. Then he
saw the glove. He picked it up with a serious look
on his face and then looked at my mom and I.
Since he seemed ticked off my mom and stared back
at him with a straight face and we didn't say a word.
In that moment, we didn't want to own the chicken.
He kind of had a half-grin on his face and placed
the "chicken" back on the sink. From there he started
examining my shoulder. Unless he reads this post, as far
as I know, he doesn't know we blew up the chicken. 
May 31st my mom and I met with the admissions counselor. In the morning I woke with my right ankle kind of swollen but I thought it was due to the dampness. I didn't really think it was anything to worry about. When I met with the counselor she recommended that I apply for the Spring 2013 semester because I needed to take calculus and general biology. My GPA was pretty good considering at that point I had had 16 shoulder surgeries since starting college. I was at 3.65 which I was happy about. The next morning I woke up to a very swollen and bruised outer ankle. It was directly over the area that I had ankle surgery on. Go figure! Now that the shoulders were feeling good a different body part decided to act up. It's always something.

I met with my ankle orthopedic and basically my
tendons and ligaments were really inflamed...obviously.
Treatment was a walking boot for 2 months and pt.
Now we get to rehabilitate both shoulders/scaps and
an ankle. How fun!!! 
That summer I decided to take calculus. To this day I don't know why I thought taking summer calc was a good idea. It was the death of me. I had no life. It was so hard. I was studying all the time and I was not grasping the material since the pace was too fast for me. I wanted to rip my hair out. Math is not my strong suit. I decided I was best off withdrawing from the class and taking it in the fall instead.

Now that life wasn't consumed by calc (oh thank God) I went back to drawing. One reason was because even though I was accepted as a camp counselor, I had to decline because of my ankle. Since I still wanted to be involved with the camp in some way, I decided to draw a picture and donate it to the camp to raise money. I ended up getting a print of the tiger I drew for Dr. B and then I drew a different tiger for the camp.

If there's anything that I've learned over the years, when plan A fails make a plan B. As my mom said when she was diagnosed with her cancer, "Sometimes we can't control what happens to our bodies so take control of the things you can". There are too many times in life when things don't go according to plan. Sometimes you just have to get creative because one way or another there is a way to be involved in something even if it isn't ideal.

When mid July hit I was ridiculously excited. For the first time since 2007 a shoulder surgery had lasted longer than 3 months on my right shoulder. YAY!!! This was month 4 and it was a record. I couldn't believe it; now I just had to get to months 5, 6, 7 etc. I continued going to therapy three times a week and things were still moving in a positive direction. THEN, the last week of July came around. Illinois was insanely humid. I went to therapy and my right shoulder was hurting  the most it had since surgery but still not as bad as it was presurgery. That day we took it really easy; I wasn't the only patient feeling the effects of the high humidity.

The next day while I was drawing the picture of the dog below for a customer, I clasped my hands together and stretched them in front of me down towards the ground just to stretch a little. When I did this, I felt my right shoulder subluxate out the front and it then went back into place. The first word that came to mind I can't write in this post. Let's just say it started with F. I didn't say anything to anybody. When I went to therapy the next day I just said I was still hurting so we took it easy again. I didn't say anything because I was embarrassed. How in the world do you go from feeling stable and the best you've felt in a long time to waking up the next day with your shoulder unstable?? Three words: connective tissue disorder (I wasn't diagnosed with the hypermobile type of Ehlers-Danlos Syndrome yet in 2012). I think I was in shock or denial when I subluxated that week. I was heartbroken; I knew it was only going to get worse from there because that's what happened all the other times.

After two days from the initial subluxation I knew I had to say something to my parents and my therapist. When I went to therapy my awesome pt asked me how I was feeling and I nonchalantly just said, "Ummm yea, the right is subluxating out the front...again." I showed him and told him it happened the other day but I didn't say anything because I was hoping it was just a random fluke but it has happened a few more times since then. My therapist kept his composure and decided if it was still acting the way it is in a week I need to go back to Dr. K to be evaluated.

The following week I scheduled an appointment with Dr. K in August because trouble was brewing in my right shoulder. Looking back, the inflammation in my right ankle seems to have been a blessing in disguise. By the time the end of July hit, my ankle was doing better but my shoulder was subluxating again. If the ankle issue hadn't happened I would have accepted the camp counselor position at the WAFS Burn camp and had to cancel at the last minute which would have left those people in a bind. I do believe that things happen for a reason. The WAFS Burn Camp was so gracious and thankful for the drawing/print that they invited me up to the camp along with my mom and nieces. I will talk more about that in the next post along with what happened when I saw Dr. K.

Those 4 months were the best and most hopeful months that I've had in a long time. If you've never experienced it, it is very hard to go from high hope to oh my gosh there is a serious problem essentially overnight. I hope I can experience that hopefulness again one day soon; this year has been so hard and long.

Lock us in an exam room for 2 hours and it's understandable why we are so easily
amused. In this picture we were NOT in a car accident. I was braced from surgery on my
 left scapula and my mom just happened to braced from surgery on her right shoulder
by Dr. K in Jan. 2012. Now just picture this awesomeness walking around everywhere.
 We already get enough looks walking around since mom is only  5'5 and I'm 6'. Let's slap on a
 couple shoulder braces to draw more attention. After seeing this picture, you might
 understand why we started to get silly and blow up chicken balloons from a  glove.
This picture makes us laugh.  

Saturday, May 31, 2014

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.

Tuesday, April 29, 2014

Thankful for Dr. K

December 2011:

A little over a month after the left scapular muscle reattachment surgery I started physical therapy. I only did about 2 weeks of therapy because on December 23, 2011 I was going to be having surgery on my left shoulder joint to stabilize it. I met with Dr. K the day before surgery to go over any last minute questions and I also had a gift for him. I had been working on a tiger off and on between surgeries for six months to give to him as a huge thank you. He has done so much for me and thank you just doesn't seem enough. When I went to my appointment I had it all wrapped up in festive Christmas paper. Dr. K walked into the exam room and saw this big gift sitting on the examining table and his eyes lit up like a child on Christmas morning and he said, "Is this for me?!" He picked it up and moved it over so he could evaluate my shoulder. After doing so, Dr. K asked me if he had to wait till Christmas morning to open up his gift or if he could open it now. I chuckled and said, "You have to open it now! But don't read my card now. Read that later when I'm not here." He ripped the paper off and was looking at the tiger. I then told him I drew this tiger for him. Dr. K's eyes got big and he just looked at me. Dr. K had no clue that I knew how to draw. It never came up in our five years of conversation. The only thing I could think to say was, "Surprise!" Dr. K gave me a hug, smiled at me, and said he will see me tomorrow. The only thing I regret on that day is forgetting to take a picture with him and the tiger. I guess I'm going to have to ask him to take a picture with me one of these days.

On the plaque it says, "Dr. K thank you for walking
this journey with me"

The next day was surgery day. It was kind of amusing because the nurses and other doctors kept talking about the tiger. So either Dr. K or the fellow that was in the room when I gave Dr. K his gift must have said something. Surgery was an open posterior capsular shift. I had posterior (back) instability so Dr. K fixed that and cleaned up the scar tissue and loose body that was getting caught in the joint. This surgery took longer than my surgeon originally anticipated. In my operative note he has written, "...due to the complex revision nature of the procedure, an additional 90 minutes was required." As expected recovery was difficult. My Christmas day consisted of sleeping through just about every Christmas movie that was put on. I hurt a lot and my body was just so tired. This was the fifth surgery that I had done in 2011. Fortunately I was on winter break from school so I could really take the time to rest up and get ready for when classes started at the end of January. Bracing was for 6-8 weeks.

January 2012

At the end of January I started my two classes. I took Biomechanics & Kinesiology as well as an Exercise Science Course. I LOVED those classes; especially the biomechanics & kinesiology one. I learned so much in those classes and the biomechanics/kinesiology one just made sense to me. From all the surgeries, I have learned a lot of the anatomy. The test I did worse on was actually on the shoulders. I got a B. I knew the anatomy but on the test you had to be able to explain what motions were needed when giving a person a high-five, shooting a basketball, driving etc. These are all motions that I haven't been able to do in years. To put in perspective, the last time I had my arms straight in front of me at shoulder level or above my head was 2006. It's a motion that I can not do. It was/is so aggravating that I don't know what "normal" is anymore. Regardless, I still loved the class and I still want to major in Kinesology (movement science). 

On March 23, 2012 I was having surgery on my right shoulder for the crazy anterior (front) and posterior (back) instability. I thought this was going to be the last surgery that I would be having for a few years. The left side was done with all of its surgery and now I just needed to address this side. I was so happy that day. When Dr. K came into the room I was in the middle of playing the card game Rummy with my mom. He asked me if it was okay if he interrupted my game so he could examine my shoulder. I told him it was okay as long as he takes a picture with me before surgery. It was a deal. 

It ended up not being the last surgery on my right shoulder BUT I can still
remember how happy I was that day. I thought there was actually going to
be a break from all this surgery. 
After Dr. K moved my right shoulder I felt my muscles start going into spasm and my right shoulder popped out the front. I didn't say anything to him right away because I didn't think it was a big deal. We took our picture and Dr. K told me he would see me in the operating room. After he left the room the nurse needed me to sign some paperwork but I couldn't move my right arm so I signed them left handed. She looked at me and asked, "What's wrong?" I moved my gown and she said, "Oh my, I'm going to go get Dr. K." Dr. K came back but wasn't able to reduce it. I told him not to worry about it because they're going to come get me soon anyways to give me a nerve block and I won't feel it. You know you've had one too many subluxations/dislocations when you start telling your surgeon don't worry about getting my shoulder back in place because it will be numb soon and you will be doing surgery on me.     

Dr. K and I. Behind my smile I'm thinking, "Uh oh my shoulder is coming
out the front." Again, you learn to become a good actress.
Recovery from this surgery was one of the harder ones. It was an open procedure both anteriorly (front) and posteriorly (back). This surgery took an additional hour of time. Dr. K put 5 anchors in to secure things. He also scoped it to clean out all the scar tissue and labral fraying (cartilage surrounding socket). At my post-op appointment Dr. K told me my posterior capsule was extremely patulous and I had a lot of laxity at the bottom of the joint. He also found I had one spot of moderate chondromalacia (softening of the cartilage) on my humeral head ("ball"). To this day I still don't get how I was more unstable out the back than the front because every single time I went to move my arm my shoulder always popped out the front.

Day after surgery. Ice is your friend after shoulder surgery!
I was able to remove the bandages a couple days after I got home. There
was a lot more swelling and bruising with this surgery.
Incision on the back of my shoulder. You can see the bruising on the side
of my arm. 
This is Daisy. She had an infection on her foot that she wouldn't leave alone.
We recovered together haha.
Lucky for Daisy, she was able to keep the cone off her head as long as she
didn't lick her paw. I didn't have that luxury. She's one big baby. 
Two weeks after surgery I forced myself to go back to school so I could take my tests and be all caught up before Spring Break started. It was so hard; I almost started crying after an hour of sitting when it was a 2 1/2 hour class. Looking back it wasn't the smartest move but I hate being behind on my assignments and I just wanted to be able to rest all of Spring Break without worrying about looming assignments that I needed to complete. Since they were night classes, by the time I got home, I was SO ready for bed.

About 18 days after surgery was Easter. I sat with my nephew Austin
and played with Easter eggs.

My nephew Austin. It's good to have some fun for a couple hours
and then go relax. It helps break up the day and it is good for the soul.
I've said it a lot before but no matter what, after surgery you are going to hurt. I'm either going to hurt laying in bed by myself or I am going to hurt while having a little fun enjoying myself with my nephew. Personally I would rather hurt while having a little fun. I hope everyone incorporates a little bit of fun into their day even when they aren't feeling 100%. 

Friday, March 28, 2014

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: 

Thursday, March 27, 2014

Quadrilateral Space Decompression Surgery

In June 2011, after arriving back home in Illinois after my follow-up appointment with Dr. B in Kentucky, I scheduled an appointment with Dr. K. The pressure that I had building up in the back of my right shoulder joint was no longer there since something had popped when I went to reach for something a few days prior. Instead of having the pressure build-up type pain, I was having sharp/catching pain because I felt like there was something getting caught in the joint. When I saw Dr. K he evaluated my right shoulder and ordered an MRI. The MRI revealed my capsule was stretched out all over again, there was a loose suture anchor inside the joint, and my shoulder was subluxated posteriorly. Which means I have posterior shoulder instability...again.

After these findings were discovered, I contacted my doctor in California and doctor in Kentucky. It was decided that surgery should be done to the stabilize the right shoulder first before the quadrilateral space decompression could take place. This is because the quadrilateral space is in the back of the shoulder and I was really unstable out the back. If we did the decompression first, there was very high likelihood surgery would fail because of the instability. So in July 2011 I had surgery by Dr. K here in Illinois. He did an open capsular shift to stabilize the joint and to get all the loose sutures out of the joint as well. As usual, recovery was no walk in the park, but at least I was off of school for a few weeks so I didn't have to worry about homework.

Come the end of August, I was signed up for a couple classes. Nothing to terrible; just statistics and speech. I didn't want to sign up for more because I knew I would be having at least 2 surgeries that semester, possibly 3. About 2 weeks into the semester, I was letting my teachers know I would be missing a week of school because I would be having surgery out in California. As usual I got my assignments ahead of time and got as much done before surgery.                                          

On September 11, 2011, my mom and I flew to California. It was pretty surreal. Less than a year from that time, I was being told by an evil doctor in St. Louis that there is nothing wrong with me, I'm attention seeking, and my mom and I need a psychiatrist. Within the next 2 months I had found a doctor, met with him, was diagnosed with quadrilateral space syndrome, and told surgery was needed to decompress my axillary nerve. Yet again another example of why you need to listen to your body and be your own advocate. If I had listened to the St. Louis "doctor" and not done my research Lord knows how long this would have gone undiagnosed.

While we were in California, we couldn't have asked for better weather. The day before surgery we were able to explore a little bit since my pre-op appointment was early in the morning. This was the first time I had ever seen the ocean in person. Listening to the sound of the waves crashing against the rocks is a sound I don't think would ever get old. It was so peaceful.

My mom and I went to a little town in Pescadero, CA.
While eating lunch on the beach all of a sudden a bunch of birds
got very close and started to swarm us.  I didn't have to zoom
on the camera to get a picture of this bird. My mom doesn't
like birds that close to her. I got a good laugh watching
her reaction. 

The Pacific Ocean

September 14, 2011 was surgery day. The day I'd been waiting for for several years. Everything went really smooth until I started to wake up in recovery. I woke up laying on my right side (the side that had surgery) because my left scapula (shoulder blade) was killing me. The nurse kept telling me to lay on my back since I just had surgery on my right shoulder. I told her I can't because my left scapula is shifted out of position and my right side doesn't hurt. She then told me I didn't have surgery on my left scapula I had surgery on my right. I then told her with my medical lingo, "My left scapula is subluxated superiorly and laterally. I need someone to move it back. In order to do surgery on my right shoulder I had to be positioned on my left side and my scapula is now out of position." She looked at me with eyes wide and mouth agape and asked how I knew that. I told her this has happened to me too many times to count. The nurse then went and got one of the other orthopedics to come evaluate my left scapula. I told him the same thing I told the nurse. He then asked me if I was in medical school. I told him no. He then said, "How do you know all this". My reply, "I just do!" haha This doctor ended up going to get Dr. T out of surgery to come figure out what is wrong with my left scapula. They took x-rays but they were normal. I told everybody it will be normal; it never shows. Keep in mind while all this is happening, I'm still waking up from general anesthesia and have a bunch of pain meds being pumped into my IV. I was getting aggravated with my doctor because I knew what had to be done to get my scapula back in place but nobody would manipulate it for me. I remember I even told Dr. T to go call Dr. K in Illinois to learn how to get it back. Dr. T said no. Then I told him to go get a syringe, fill it with marcaine, give it to me and I'll inject the medicine where it needs to go myself. Dr. T said no again. This banter continued back and forth for some time. My mom ended up talking to Dr. T on the side explaining to him what he can and can not do to shift my scapula back into place. Dr. T came back by me and told me he will try to adjust it. I think he gave me a shot of versed (amnesia medicine) because he told me you might not remember this. Well I did. He lifted my left arm, put pressure on my scapula and all of a sudden it made a pop and went back into place. Dr. T's eyes opened wide and quietly to himself he said, "It popped!" I looked at Dr. T and said, "Thank you. I told you so". From that minute forward I was absolutely fine and talked about hockey with the nurses. I was discharged from the hospital a couple hours later and all things considered in pretty good shape.

This picture was taken on a separate occurrence, but this is basically what
I woke up with in recovery after surgery. I think it's pretty self-explanatory
of why I couldn't lay on my back without a ton of pain. 
I've come to the conclusion if you have to have surgery you may as well recover pool side in a lounge chair!

Not a bad way to recover
As usual strutting the Blackhawk pride :) 
At my post-op appointment a couple days later, the first thing I did was apologize to Dr. T for talking to him in more of a strict tone. I told him that is not my character whatsoever but I was killing, I knew what was wrong, and I knew what had to be done to fix the problem. Dr. T told me there is no need to apologize. You were in an insane amount of pain. I don't take what my patients say personally. Happy to say ever since I had this surgery I'm yet to get the crazy sharp pain down the back of my arm. When things were going well up until this past year and a half, I was able to get my arm past 45 degrees doing flexion (bringing arm in front of you). This surgery helped so much. Here's a link if you want to read more about Quadrilateral Space Syndrome. Quadrilateral Space Syndrome Info

Now that this surgery was over. I had a couple months to do rehab and then it was off to Kentucky for left scapular muscle reattachment surgery. 

This picture was taken like 2 maybe 3 days after surgery. I've never felt that
good after a surgery before. It sure put joint surgery and decompression
surgery in perspective for me. I would take decompression surgery ANY day
of the week.

Sunday, March 16, 2014

Results From Pennsylvania

Well, we made it home safe and sound from Pennsylvania. The weather behaved and we didn’t run into any troubles which is a very good thing. Normally we have a couple hours to site see but not this time. It was strictly medical. We spent 6 hours at the doctors’ office on Thursday; an hour and half waiting, two hours with the physician’s assistant, and three hours with the doctor himself. The next day we spent two hours with the therapist. It was a relief not being rushed; especially since my history is complex. The visit with the doctor from a diagnosis perspective was very successful. It is such a relief to finally have answers; especially when I’ve been saying for 18 months something is not right and I can pinpoint the day the problem occurred. Hopefully from here on out we will be able to figure out a game plan for treatment now that we have a HUGE piece to the puzzle.

The ultrasound was not as painful like I feared it would be. The doctor was extremely gentle with me and I ended up with just a standard ultrasound because I don’t have enough motion to do the movement one. The doctor told me even if I did have the dynamic ultrasound done, it wouldn’t make a difference because the problem could be seen with slight motion at my side. The ultrasound revealed I have a lot of inflammation around my brachial plexus (bundle of nerves that send signals from the spine to the shoulder, elbow, & hand) and my brachial plexus is all scarred down. It is also getting completely compressed between my scalene muscles (muscles on the side of the neck). When I go to move, it shows there is no space at all for the nerves to move. I don't remember the exact location, but the doctor said the nerve was "popping out" because there is no space. It appears the bodies natural response is to go into overdrive and heal itself when trauma occurs is not necessarily a good thing. The scar tissue that has formed is preventing my nerves from being able to move. They are stuck. I’m waiting for the official report but I’m pretty sure he said I have thoracic outlet syndrome and brachial plexopathy. When you add these nerve problems to the scapular dysfunction, instability and chondrolysis in my right shoulder, you get one very messed up shoulder joint.

As far as treatment goes, that one I’m not sure of yet. I emailed my doctor in Colorado and I am waiting for a response. The doctor I saw the other day uses alternative modalities of treatment and I don’t understand how that’s supposed to get rid of the scar tissue that is clamping my nerves down and get me better.

In the meantime, there are a few things that I can do to help my symptoms. One is to wear my brace whenever I’m standing and prop with pillows whenever I’m sitting. This will help reduce the stress on my nerves, shoulder and neck because the weight of my arm will be supported. I was given a device called a high voltage unit which has been programmed with 3 different settings. One of these settings is to help increase circulation and reduce inflammation, another for muscle spasms, and the last one is to help with pain. I think this will be beneficial.

This diagnosis explains so many of my symptoms. Nerve compression is not a good thing to have. It explains the sharp pain into the back of head, why my neck has been hurting, why I can’t lay on my stomach, why I can’t turn my head without discomfort. It even explains why it hurts to walk. Holding that upright position that you have to do when you walk is compressing my nerves. It explains why it hurts to write/type/draw after a very short amount of time, it explains the burning/sharp pain over my shoulder and up the side of my neck into my jaw, ear, & side of face, it explains why my shoulder freaks out when it is moved past its “safe range”, it explains why my shoulder starts to shift forward and the muscles spasm like crazy, it is also a contributing factor explaining why my motion is so limited. The reason my motion increases with my neck bent is because there is space for my nerves to move.

Thank you so much for the positive, happy comments that I’ve received. They are very uplifting; especially on a very stressful week like this one. They do more than you realize. I can’t begin to say how relieved I am to finally know what has been interfering with my ability to get better over this past year. For the first time in a long time, I’m a little optimistic that I will be able to gain more motion and gain a little more independence once we figure out the best course of treatment for me.

There's 9 days left to order your Hypermobility/Ehlers-Danlos Syndrome Awareness Shirts. May is HMS/EDS awareness month. A portion of the proceeds will be donated to the EDS National Foundation. HMS/EDS Relief Fund for Megan

Saturday, March 8, 2014

Heading to Pennsylvania

I'm sorry for being absent from the blogging world. It has been quite a busy month with a change in plans...again. I ended up going for the MRI of my neck. It did show I have arthritis and a few mild bulged discs but it doesn't show anything that explains why my motion increases when my neck is bent. The doctor I saw was very nice and everything but he didn't really have any suggestions. Which means I had to use my resources and do my own research.

One of the pluses about blogging and sharing my story with others is that I have been fortunate enough to have gained a few "email pals" all over the place. It's one of those things that would have never happened if I didn't have any medical issue. It's funny because I have not met any of my email friends face-to-face but there is still a supportive "bond" because we all share at least one thing; an understanding of what it's like to have a bad shoulder.

With one of my shoulder pals, she had mentioned she had a dynamic neuromusculoskeletal ultrasound done. This is a specialized ultrasound that views the nerves, ligaments, tendons, etc. while the shoulder is in motion. It sounded very interesting and something that could potentially be very beneficial for me; especially since my problem is when my shoulder is moving. Every test I've ever had done requires my arm to be still. I told my parents about the test and needless to say they were intrigued; especially when the 2 pictures below demonstrate what happens on a weekly basis for no apparent reason. It is not fun and it doesn't feel very pleasant either.

There are many days where I wake up like this for no reason.
My muscles clamp down and everything gets all out of whack.
This particular episode happened last weekend.  I was
locked this way for 48 hours unable to bring my arm to my side. 
Hand discoloration that occurs every time. 
As I did my research, I came across a paper that had two email addresses of the doctors that do this ultrasound in Pennsylvania. When I spotted those addresses, I got so excited and scribbled them down immediately. I decided to compose an email of my symptoms, pictures of my motion with my neck bent versus neutral, and ask if they knew of anyone who does this test in the Chicagoland area. There is something so bluntly obvious going on but we haven't been able to pinpoint what it is yet. My mentality when I compose these types of emails is, I have nothing to lose and the worst thing that is going to happen is I won't get a response. Fortunately, 2 hours later I had a response!!

Attempting to do a punch-up. It has only gone this high for 18 months.

Doing the same punch-up. Only difference is my neck is bent.
Straight-arm raise. Past 18 months this is as high as it goes.
Holy cow! Bend my neck and I can move!! Who'd a thought?

Unfortunately the doctors in Pennsylvania did not know of anyone who performed this specific ultrasound test in our area. As I told my parents, the East coast is feeling left out because we haven't been there for medical treatment! This week my mom and I will be traveling to Pennsylvania to meet with the doctor and have the ultrasound done on Thursday March 14th. Based on the information I sent, the doctor thinks there is a problem with my brachial plexus and will be evaluating me for a condition called thoracic outlet syndrome. We will be there Friday as well because the doctor may want more detailed imaging of my thorax and shoulder. I'm very anxious and at the same time scared for this upcoming appointment. I'm scared because it is going to more than likely kill because my motion will have to be forced and my shoulder has a mind of its own and freaks out. I'm also scared for the test to come back "normal" because something isn't right; however, I just have this gut feeling that where we are heading is where I am supposed to be. When I contacted my doctor in Colorado to see what his opinion was his response was, "I am in favor. The more info the better; particularly with your shoulder and neck issues!!" It would be devastating to find out in rehab after the reverse shoulder replacement I still can't move because it's a nerve issue and not strictly a bone/joint problem.

In case you didn't know May is HMS/EDS (Hypermobility Syndrome/Ehlers-Danlos Syndrome) Awareness month. I created tshirts to raise awareness. We need a minimum of 30 orders for the shirts to be printed. They are $15 each plus shipping. So far we are over half way there!! This is the link to the shirts. HMS/EDS Relief Fund for Megan
I will be donating a portion of the profits to the EDS National Foundation. EDS National Foundation