Monday, September 30, 2013

A Big Ol' Mess 2013

Chronic ongoing medical problems can cause a lot of stress on relationships with friends and family. I don't think it is something that happens on purpose. I think it is something that comes with the territory when it has been going on for a number of years. It takes a lot of effort to keep those relationships strong. There are feelings of guilt, jealousy, tension, not being able to relate, not wanting to be involved, confusion, not being able to physically help, frustration. The list goes on. From a patients perspective, I think guilt is something we feel a lot. It's not a matter of wanting to be the center of attention, or being spoiled compared to others. It's more an issue of we might need more help because we physically CAN'T and out bodies need "down time" to get through the day. There is a HUGE difference.

Ex: my sister needs a wrist fusion surgery. She has needed it for quite some time. Of course she hurts (who wouldn't) and it obviously limits her ability to do certain tasks; however, in the big picture she is still very functional. Getting dressed doesn't cause a problem, it doesn't effect her entire upper body, she can drive, she can work. She is way more independent than me. My sister lives in our house with her two children (my nieces). When she has surgery that means my mom and I primarily inherit 3 individuals to take care of. Plus my soon to be 91 year old grandpa. I'm very limited in what I can do to help out which means my mom is the primary caregiver. My mom has her own medical conditions that she deals with daily. I feel a ton of guilt that my sister hasn't had her surgery done yet. I can't magically make my body physically able to do things that I can't or shouldn't be doing to help out in a way that is needed to help take care of a post-op person plus a 7 and 10 year old who have their own activities and schedules. It is really hard when you are put in this type of position.

Since my last post on September 12th I've had my 8 year injury anniversary on September 21, 2013, had 2 doctor appointments, been to Cleveland, Ohio and back to Illinois, got a lot of information about what's going on with my shoulders, and have just about made up my mind with how to proceed.

On September 23, 2013 my mom drove me to Cleveland, Ohio to get a second opinion about treatment for my right shoulder from Dr. G. It was one very long day. We were up at 4:45am. In the car by 5:45am and didn't get to Ohio until about 3:30pm. This gave me enough time to shower, chill out and get to the doctor by 5:15. It was so busy. Luckily, Dr. G couldn't have been nicer. Coincidentally he was trained by my Colorado doctor, Dr. M. At the appointment, Dr. G tried to examine my shoulder and was very unsuccessful. Since the 23rd I haven't been able to bend my elbow up all the way to my shoulder. Tasks such as eating and brushing my teeth have to be done with my left hand because I can't reach my mouth with my right. Dr. G is going to call me back with his opinion. He wants to talk to Dr. M and consult with a few doctors that he knows. I respect this a lot. I'd rather a doctor take the time to get all his facts straight before giving me their opinion.

 Elbow still doesn't bend past here

After the appointment with Dr. G
Luckily I can dangle again and the
above picture only lasted a couple days.

Ready for the car ride home to Illinois. I had 5 different
pillows to prop with to be as comfortable as possible and have
support for my shoulder with all the bumpy roads.

September 26, 2013 I saw my long time Illinois doctor, Dr. K. He is in agreement with Dr. M that I should have the reverse total shoulder replacement done. Dr. K felt bad telling me this because I am only 24 and the replacements only last approximately 10-15 years. Like I told him, I am young but my shoulder is old. My shoulder is non-functional and it kills. Dr. K then said, "Your shoulder is ancient. It is that of a 78 year old woman". He couldn't believe what my MRI looked like. Not only did it show all of the arthritis, but it also showed inflammation is within the bone. When Dr. K was in my shoulder in March of 2012 I had moderate chondromalacia (softening of the cartilage). In a matter of a year I went from some soft cartilage to bone-on-bone arthritis. Dr. K then said to my mom and I we might want to go to France because they have been doing the procedure a lot longer than the United States and it might be cheaper than Vail, Colorado. When you deal with chronic medical things, you prepare yourself for various scenarios. Hearing you might want to go to France was not one of those scenarios we prepared ourselves for. We were both shocked. I highly doubt we will go to France but I guess you never know for sure.

Yesterday I was washing a cup and the handle broke off. The little bit that my shoulder moved forward when the handle broke, caused my shoulder to subluxate and my muscles to freak out. Trying to do a basic little task shouldn't cause my shoulder to act the way that it does. It is like a ticking time bomb. I never know when it will go nuts.

The muscles surrounding my shoulder and in my neck
tighten so bad. When my shoulder reacts like this, I can't
begin to express how much it hurts. 

So at this point I am pretty sure I am going to have the reverse total shoulder replacement. The way my shoulder is now is not an option to live with. Even though there is a relatively high complication rate (10-15%) then you add in my history, I think I would regret not having the procedure done knowing I have this option. I know my shoulder has the potential to have more function than what it does now. I was told by my CO therapist that in order for this procedure to be successful I have to get my deltoid as strong as possible. I honestly do not know how I am supposed to strengthen. I have an email in to Dr. M to see if there is something to ease the pain within the joint to allow me to strengthen. Right now any sort of muscle contraction causes nothing but sharp pain and I constantly sit forward it seems. So until I know when the surgery will be done or unless something crazy happens, I will be trying to write about more about the story of how I got to where I am today. I left off in 2011.

Here's a short 5:40 second YouTube video that was made.
23 Orthopedic Surgeries More to Come...Please Help!

Thursday, September 12, 2013

A Difficult Decision 2013

I can't believe it has been over a month since my last post. The past several weeks have been very busy and my life has been consumed with unexpected medical things. In the book Oh, the Places You'll Go! Dr. Seuss talks about a place called, "The Waiting Place" where people are just waiting. I feel like I live there. Lately I've been waiting for answers from doctors, waiting for test results, waiting for appointments, waiting for second and third opinions, waiting for an easy answer, waiting for someone to relate to, waiting for people who can relate, listen and understand what life altering decisions I have to make at 24. The list goes on and on. Just waiting doesn't sound like a big deal but depending on what you are waiting for, it is. It can be really stressful.

Let me catch you up on how I landed in "The Waiting Place". Up until August 9, 2013 my right shoulder was definitely being problematic but since that day it has made a major turn for the worse. At 3:30 in the morning, I woke up on my right shoulder and had this intense burning sensation going up the right side of my neck and over my shoulder. The pain was way worse than my usual "normal" pain. I knew my shoulder was sitting forward just by the sensation which made me hesitant to even move. Just trying to roll onto my back and get into an upright position caused the burning sensation to increase up my neck and cause pain across the upper right quadrant of my chest. When I finally got to my feet, I was hunchback, my right arm was really heavy and my muscles were in an insanely tight spasm. All I could think to do was go into my parent's room for help.

Immediately my parent's knew I was having a problem because I never walk into their room for help in the middle of the night. To their surprise, the pictures below is what they woke up to. There wasn't a ton they could do for me other than help me get propped on a ton of pillows, get the heating pad for me and get me my medications. My dad tried to massage some of the knots that had formed, but any pressure just made me feel worse. Going to an emergency room wasn't an option because ever since my last visit to the emergency room in September 2012 my motion has been very limited and I'm now scared it will get worse. Since September 2012, I am even more hesitant to go to anyone other than my physicians who I trust.   

Waking up like this is never pleasant. My arm was stuck in this position.
Putting a sling on wasn't helpful because I couldn't bring my arm in close
to my stomach.  

Side view
After this incident, my parents and I decided it was in my best interest to have the EMG test repeated in Colorado where the neurologist works with Dr. M. My EMG was scheduled for August 28, 2013. The day of the EMG couldn't come soon enough. Each day my motion became less, my pain increased, and I was less capable of doing my regular tasks on my own due primarily to the lack of motion. I have/had to wear the sling on my right side for extra support when I go out and about. I have had to sit and relax to get me through the rest of the day. When you combine all the issues I have going on my right side with the issues I have on my left side it makes it very difficult to do simple tasks. My "good" left shoulder has posterior instability and a possible muscle detachment at the bottom of my left scapula making it hard to wear a sling because of the pressure on top of my left shoulder. Wanting to be as independent as I possibly can, I can't begin to describe how hard it is when neither shoulder functions properly at all. All motions have to come from my elbows. Our flight to Colorado on the 27th couldn't come soon enough.

August 28, 2013 was the day we had all been looking forward to, to have the second opinion EMG test. This appointment was 100% different than what I experienced in Illinois. This doctor was extremely nice and was extremely thorough with the test. He tested my left arm first and I knew immediately he was doing the test correctly. Unlike the other doctor, this doctor tested the nerves in my hand, forearm, upper arm, shoulder and over my shoulder blades in both arms. With all of the various issues I have going on in each shoulder this test killed like no other. The neurologist knew it was severely hurting me and for the first time ever a doctor actually gave me an out and said I could come back at a later date to have the right side tested. I told him, "No. It's okay, I need the other side done more than I need my left so just finish the test." He then told me it's not okay with him how much I was hurting but proceeded on with the test like I had requested. I opted to have the test completed all at once because I was seeing Dr. M the next morning and needed to have the results. Out of all the doctors that I have seen over the years, this was one of the first doctors that has really looked at the big picture and acknowledged how all of these issues have literally put my life on pause. He is right.

 L. scapular winging just lifting my arm forward. 
 Something's not right.

L. scapular winging when I push the wall.

The next day I saw Dr. M in the morning. Compared to when I last saw him on July 2nd, the regression of my shoulders is mind-blowing to me. The first neurologist who said there wasn't a problem with my nerves and did the test wrong was completely incorrect about his assessment. The second EMG test showed there is an issue with my long thoracic nerve on both shoulders and an issue with my suprascapular nerve. So much for this being, "A strictly mechanical orthopedic issue." Besides the nerve issue, my motion sucks. My right shoulder is basically non-functional. I get my hair up by bending over. Get dressed by bending over. Wash/dry my hair bending over. Climb on chairs to reach things out of cabinets. It is annoying and drives me nuts. Dr. M ordered X-Rays which showed I have no joint space in my right shoulder which means when I move, my motion is bone on bone. To further assess it an MRI was ordered for the next day. Someone would call me the following week with results.

The chart below compares the motion I had on each shoulder July 2nd and what I have now.
R. Shoulder 7/2/13
R. Shoulder 8/29/13
L Shoulder 7/2/13
L Shoulder 8/29/13
Forward Flexion (moving arm in front of you)
20 degrees
5 degrees
90 degrees
60 degrees
Abduction (moving arm away from your side)
30 degrees
External Rotation
20 degrees
0 degrees
20 degrees

Unfortunately it was a holiday weekend so it was an extended wait for the results of my MRI. To distract our minds my mom and I would play cards outside by the pool, go for short walks through the village, sit on a bench listening to the water rushing through the stream and watch the squirrels harvest to prepare for winter. We also went on a few car rides.

My mom and I were going to go to the Continental Divide
but we couldn't because we couldn't see the mountains
 clearly due to the storm clouds that had rolled in. 

This is Gore Creek. It runs through Vail Valley. When we
left the first week of July all of these rocks were submerged
under the water. 

The results are in. I talked to Dr. M on the telephone the following week. He could not have been nicer. I think this was the first time he actually "met" me because it was strictly a one on one conversation and I didn't have 4 other pairs of eyes staring at me as I tried to explain my symptoms. The main showing on the MRI of my right shoulder is the arthritis has progressed since April. It also shows thinning, fraying, fissuring, swelling and is basically just a mess to sum it up. I have diffuse grade 3 arthritis on the glenoid (socket) and diffuse grade 3 and 4 on the humeral head (ball). The only recommendation that was offered is a reverse total shoulder replacement. This procedure is typically done in the elderly. They consider patients who are 50 years old as young candidates who have the procedure done. I am 24. Dr. M told me I am so young to have to need such an operation. I agree with Dr. M; however, like I told him, I am young but my shoulder is not. My shoulder is non-functional. I know I will never have a normal shoulder but I do know this shoulder has the potential to be more functional than what it is now.  

Right now I am kind of in a holding pattern. I don't want to jump into anything to quickly without really thinking things through. The reverse shoulder replacement would permanently alter my anatomy. I am not having my procedure done in Texas but here's a basic link that describes the procedure; (it is strictly animation pictures/video) At the end of the day this is a big decision that I have to make. If anyone has had this procedure done, I would love to hear your feedback on it.

A fundraising page was created to help with medical expenses. If you would like to donate follow the link below. Thank you!!