Doctor Appointment July 31, 2014

Another long awaited doctor appointment and once again I am being sent to an out of state doctor due to the complexity of all the various shoulder/scapular issues. In the near future I will have to go to Mayo Clinic in MN for a consultation for both shoulders/shoulder blades. My joints are basically working against each other so if you do work on the shoulder joint it is going to exacerbate symptoms to the shoulder blades, and vice verse, because neither is in good enough shape to take over the demands of the other. We know both sides do need surgery. It is now just a nightmare of trying to figure out what needs to be done to create less pain and increase function. We would also have to figure out which side makes more sense to have done first. Lord knows I would choose my left but when I think about all the demands I keep talking myself in circles.

We talked about possibly fusing the left shoulder blade but the doctor isn't comfortable committing just yet without me seeing the doctor at Mayo. Mentally, I know in the long run it is best to go for the opinion, but physically I wish I were in surgery right now. All this travel from state to state, and doctor to doctor over the past year especially, is hard on the body and I am getting worse as time goes by. I just want treatment to start already. I am really hoping it isn't a long wait to see this other doctor.

The increased motion in all directions with my neck bent on the right side definitely got a look. I didn't get any answers for why it happens. We were just told several times the next step is to go see the doctor in Minnesota for his opinion. The doctor I will see specializes in resolving functional disabilities by doing a lot of "crazy complex tendon transfers", allografts (cadaver tissue), and he also deals with patients who have connective tissue problems as well as problems with their brachial plexus. I was told he is compassionate and enthusiastic so hopefully this holds true; I have met a lot of arrogant not nice doctors over the years.

The shoulder evaluations always hurt a lot so today we are just taking it waaaay easy. Mentally we are whipped. There is so much energy that goes into preparing yourself for these types of appointments and it is always hard when you get news you don't want to hear. My mom is more optimistic than me. I'm more scared about being stuck like this and she reminds me that all is good because you know what the next step is and he didn't walk out on you; he is willing to help but he just wants other opinions first. She is right but it is still soooo frustrating.

We fly back home on Monday and we are going to do our best the next three days to try to not think about all the "what ifs" and enjoy exploring Boston and listening to their accents. Everyone knows I love Halloween and the movie Hocus Pocus so we are going to stop in the town of Salem one of these days. As long as we hit there I will be a happy camper. Thank you all for the thoughts, prayers, well wishes and encouraging words. They mean a ton!

How Did I Get Like This?

How did I get like this? I look back on what my life was like just a couple years ago and I can't believe the way things seem to have just spiraled out of control. I went from a person who was hopeful at the thought of possibly being able to finally get a driver's license and transfer to a different college, to a person who is scared to death that a doctor might say, "I have to learn to live with this because it's too complicated to fix." because that means I'll have minimal use of my arms the rest of my life. It's all so crazy because this time two years ago I had just hit a new stable right shoulder record of 4 months. All that excitement lasted nothing but a few days because I then woke up one random day at the end of July with an unstable shoulder. Still, even with the instability my shoulder at least had some functional motion. Not for long; fast forward to the night of September 22, 2012. My decision to go to the emergency room for a locked anterior (front) shoulder dislocation ended up being life changing. The traction applied to reduce my shoulder was absolutely ridiculous; it was too much. I now know the lining of tissue that surrounds the nerves ripped. My body tried to heal itself by creating a ton of scar tissue. My brachial plexus (bundle of nerves that serves the shoulder) is now significantly scarred down and my nerves have no space to move which means I can barely move my right shoulder.

These are the nerves that are all scarred down in me
Photo courtesy Holladay Physical Therapy

What's so weird is I have had a ton of time to analyze my right shoulder over the past two years. At the end of the day, my conclusion is that a lot of my problems are stemming from nerve compression. Why do I think this? 1.) The "instability" is only on days where I have a ton of nerve pain up my neck and over my shoulder. When this happens the muscles over the front of my shoulder spasm which causes my shoulder to be pulled way forward which mimics a subluxation. 2.) When I bend my neck and "push" it towards the ground I can get my right shoulder to shoulder level STANDING UP!! It has been two years since I have been able to do this. Such a relief to know it is still capable of getting up that high!

Motion with neck neutral

Holy smokes! Look at what
happens when I push my neck towards the ground!
My right shoulder is at shoulder level!!

Motion with neck neutral

Neck "pushed" towards the ground and there's motion!

Now some people may think I have lost my mind to have let doctors operate on me over and over again without adequate proof to show the surgery was successful long term. Sometimes people get fixated on the combined amount of shoulder surgery and think any more surgery is just going to make me worse. There is so much that has occurred between surgeries and there are various aspects where the surgeries have been beneficial. During a doctors appointment though, there isn't enough time to go explain what led up to so much shoulder/scapular surgery and what aspects have improved when you're meeting with the doctor to determine what the heck is going on with your shoulders now. 18 shoulder surgeries sounds like an absurd amount; which it is. In hindsight, I think if I was diagnosed with BJHS  from the get go, I would have had less surgery because I wouldn't have been "piecemealed" back together. I can tell you though right off the bat there were reinjuries in between surgeries and things that occurred that were out of my control.

LEFT SHOULDER:

The left shoulder has had seven surgeries spanning from 2007-2011. Five of them were for my scapula (shoulder blade). You may ask how do you end up with that much surgery. This is how…

• Surgery 1. initial scapular muscle reattachment surgery Nov. 2007
• Surgery 2: slipped down the stairs two months after surgery #1 and retore the scapular  muscle repair
• Surgery 3: I had to draw on my shoulder blade where I was still having pain. My incision wasn’t opened up enough during surgery #2 for detachment to be visualized.
• Surgery 4: I had a muscle tendon transfer done. This was a different procedure than the other three. From 2007-2010 I had muscles that were detached at the very bottom of my shoulder blade. No wonder it never functioned properly and I’ve had continued shoulder joint instability problems.
• Surgery 5: Six months after surgery 4 I got sick and threw-up several times. The throwing-up action tore my lat & serratus tendon transfer.
• At the end of 2011 I choose to have a separate surgery because I was in school and the recovery from the previous time I had the muscle tendon transfer at the bottom of my scapula as well as an open capsular shift on the joint was very difficult. I wanted to wait until I was on winter break to have my joint addressed.

RIGHT SHOULDER:

The right shoulder has had 11 surgeries spanning from 2008-2013. Why so many??? This is why…

• The instability in the shoulder joint was addressed one side at a time between scopes and open procedures. They would tighten the front and I was unstable out the back. Tighten the back and I was unstable out the front. Tighten the front and the back and I was unstable down towards the ground.
• Bicep injury wasn’t in visualization with an arthroscope first time around. Bicep injury also did not show on MRI. I literally drew on myself the morning of surgery where I was having pain. An open procedure was performed and the injury was within visualization. My bicep tendon was moving back and forth like a windshield wiper and was coming out of the bicipital groove.
• Quadrilateral Space Syndrome. I had symptoms in 2008 and did not get diagnosed until 2011. Numerous times I asked my surgeons to open the back of my shoulder and extend the incision. Nobody would. During that time period, my body created its own protective mechanism and altered proper body mechanics. Of course I had continued anterior instability.
• I had an anchor pop out two separate times resulting in two separate surgeries.
• After a surgery in June 2008 I went to physical therapy. I told her not to move my arm any further. She moved my shoulder an extra inch and POP. My labrum detached resulting in another surgery.
• I also had muscles torn at the bottom of this shoulder blade from 2007-2011. If the scapula is unstable and has altered movement patters that is going to put additional stress on the shoulder joint and potentially cause instability issues like it did in my case.

In regards to BOTH shoulders, before any surgery began I was tested and informed by a hospital in Minnesota that I do NOT have a connective tissue disorder. Well surprise, surprise. I actually do. The diagnosis officially came January 7, 2014: Benign Joint Hypermobility Syndrome. If I had been diagnosed before all the surgery initially started I guarantee that things would be not be the way they are now. I wouldn’t have been “piece-mealed together”, I would have been braced longer, more precautions would have been implemented during the rehabilitation phase, certain physical therapists may have actually listened to me when I would say I feel things stretching or it feels like little fibers are ripping.

Hindsight is always better. My instate and out of state surgeons and physical therapists are fantastic; I do not blame them for the shape I am in at all. Each and every one did what they thought was the best thing for me with the information that they had at that time, and every single shoulder surgery was necessary. Should be "fun" to show Dr. W this new shoulder motion discovery on Thursday!

Never a Dull Moment

Well, hi there! I have decided to write a separate blog about all the crazy ongoing medical stuff going on now. The past several months have been filled with so much medical and travel so I wanted to have one spot where I can go write to try to keep things organized and I figured writing a blog strictly on present day events would be a good way to keep family & friends informed since I can write from any state.

So here's the scoop:

Next Tuesday I am flying back to Boston to meet with the chief of Harvard Shoulder Services in regards to my left shoulder/scapula. I wish I had some amazing cheery news about things getting better but at this point in time I don't. The past two months have been pretty hard and the hardest that I've had in a long time. Going to Boston in May was so worth the trip but it was also a complete game changer. I was originally sent there for my right shoulder but since the initial bilateral shoulder evaluation, my left side has taken a drastic turn for the worse. At first I thought it was just a normal flare up from being moved around but as the weeks went by I knew I needed to get seen by my orthopedic Dr. K here in IL because my left side has been hurting more than anything on my right side. That's not a good sign when the right side is really messed up. With the left side though I've had swelling on the side of my rib cage, very limited range of motion with increased posterior (back) shoulder subluxations and scapular winging, ton of neck pain, ribs being pulled oddly from the muscle spasms, its been hard to hold my upper body up making it really difficult to walk long distances, sit without some sort of support, and its been a nightmare to do that thing that has become foreign called sleep.

July 1st I met with Dr. K. The very first thing he said when he walked in was, "You look nice today" to which I replied, "Thank you; looks can be deceiving." Dr. K sat down and I told him something is very wrong with my left scapula. He had me stand up and he said, "How long has your shoulder blade been sitting out of position?" I told him since May to which I received a look of horror. Dr. K tried to manipulate my scapula back into place but as soon as he let go it moved back out. From there Dr. K told me I should go back to Boston to meet with Dr. W. Dr. K thinks a scapular fusion, scapular tethering, or scapular muscle reattachment with allograft reinforcement surgery may need to be done. For these types of procedures I'm told by two separate surgeons that Dr. W is the best so I'm hoping he has an idea or two. So send good thoughts/prayers/vibes this way so I hopefully find out what needs to be done for this left side on Thursday.

Left scapula is on the right side due to reflection in the mirror. When I move
my arm a few inches in front of me this is what happens to my scapula. 

Left scapular winging from January 2014

Winging has gotten worse since January.
This picture was taken July 24, 2014.
Again L scap on right side due to reflection in mirror. 

In regards to the right shoulder I received an email two days ago from Dr. W with very unexpected news. At some point in the near future I will have to go back to Minnesota to meet with an orthopedic at Mayo Clinic who specializes in complex tendon transfers to help resolve functional disabilities in very complex individuals. Both my shoulder joint and scapulothoracic joint are functioning abnormally which makes it hard to treat; "Treatment of either one can be complicated by an inability to the other portion to compensate effectively. Having seen many different individuals, the complexity of your problem is something beyond my abilities to manage in reliable fashion...I think his insight into your complex problem would be a value..." This advice reflects Dr. W's professionalism because he is looking out for my best interest. I respect that he wants me to get another brilliant mind opinion (even though I don't necessarily want to) from a different angle so he can have as much information as possible to make the best proposed treatment plan for me. Thanks Dr. W! I'm still kinda shocked/speechless. With the way my other 3 surgeons spoke so highly of this doctors talents, I really didn't expect to be referred to another surgeon. You have no clue what it's like to be told by the top minds in the country over and over again that they've never seen anyone with this combination of problems put together this way and that you very rarely see someone who has had open bilateral shoulder and open bilateral scapular surgeries for all of these various problems. It's hard to say what to even expect in the future because there's nobody to compare me to. With the way things are now, if my left shoulder & scapula were in perfect condition it would be difficult with this right side but you add in the fact that I can't even address the right side because the left side is a million times worse and that just makes things overwhelming.

Thankfully I have great support from my family, friends, physical therapists, and doctors. They may not be able to make things magically disappear but they keep on encouraging me and help me out all the time just by me knowing I have their support. My nieces and nephews always crack me up too so even when there are not so good things happening there is still a lot of good happening too.

Fun at Brookfield Zoo!

I love how the inner tube is larger than the pot of water.

How can you not chuckle? He's showing off his water goggles.

A girls got to do what she can to get semi-comfortable to play Scrabble.

At least getting a mani/pedi is relaxing. This was the first time I had both these done. Could be dangerous.