Monday, February 18, 2013

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."

9 comments:

  1. Hi Megan! (I hope you don't think this is creepy or anything...) I remember from high school that you always seemed to have some kind of injury or were having surgery, but I never knew what the problem was. I can hardly imagine the pain you've gone through.

    Anyway, thanks so much for sharing your story; I'll keep reading!

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    1. Hey Amy! No I don't think it's creepy lol. Thank you for reading; feel free to pass it on. I hope it can give hope to just one person. Even when things get really rough you have to make the most out of whatever life throws at you.

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    2. Hello, I have serious scapula pain i live in Kentucky, I have been suffering for many years, it burns and feels like there is a poker in my back and it is spreading, I can't find a specialist I just want the pain to go away, i have tried to find a Dr. for it but i can't find 1. Please if any 1 knows of a Doctor for it my email is smilez2@hotmail.com I would be so ever thankful, Thank you.

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    3. Hello Venus, I tried to email you but I got 2 messages that the email address failed. Do you have an alternative email address?

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  2. Only ourselves can totally understand and explain what we actually feel. When we feel that there is something wrong with our body, we shouldn’t definitely ignore that. We should listen to our body, to what we feel. And I’m glad that’s what you did. Your shoulder blades problem could’ve gotten worse if you did not insisted that there was something wrong. I do hope that you’re totally fine now. Do you still go to your orthopedic for follow-up checkups? @ Fort Lauderdale Orthopaedics & Sports Medicine

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    Replies
    1. Yes, I still go for follow-up appointments. The scapular procedure changed in 2010 so I needed to have both scapulas redone. From a pain standpoint they are much better but I recently learned my scapulas move the wrong direction when I move so we are working on retraining them. I still have severe shoulder joint issues. It is just a very complicated situation; I'm a one of a kind case. I have 3 current blogs up titled Colorado Pt 2013 part 1, 2, and 3 which talks about my current situation.

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  3. Who was the Dr. that you saw in Lexington? I am having many similar issues with my upper back and scap area. All of my imaging has come back negative so Dr.'s don;t know what's wrong. The pain is excruciating and I think that the Dr. that you saw ("DR. B") could possibly help me too.

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    Replies
    1. I sent you a private message in "hangouts"

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  4. Dr. Ben Kibler is the expert in scapular muscle detachment. He is in Lexington, KY.
    I just had the surgery myself 4 weeks ago and am returning this week to see him.
    I had a car wreck 24 years ago and all doctors attributed my pain to neck problems. I went through neck tx after tx for years and years but nothing helped my chronic pain. Finally I went to see a sports medicine doctor 2 years ago who found signs of torn muscles through ultrasound. He put me in touch with Dr. K.
    Dr. K. and my sports doctor are putting together a course for an AMA doctors conference to teach doctors about this syndrome and how to diagnose and treat it. It is an odd injury and few to no doctors know a thing about it. Megan, I can so relate to your story. Good luck to you.

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