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