Update- April 11th, 2016

Unfortunate Events....

It has been 10 months since my surgery, and last Monday my left shoulder dislocated again. It pulled out a bit of the stitching and is now super loose.  It is such a disappointment since all that time and money was wasted ( in my opinion) on a surgery that didn't last even a year.

I don't blame Dr.Douglas for this, since I know I do have a hereditary condition and its just super disappointing that it didn't work. I know he has had an amazing success rate with this surgery alone with his other patients that don't have the condition I have. But for someone with MDI, it only lasted a few months.

My shoulder dislocated when I was trying to flip onto my stomach in the middle of the night. Since my surgery I haven't been able to sleep in that position, so my body tried to move that way in my sleep.

We recently have moved into a new place and with the stress of that on my shoulders I think that is what initiated the dislocation.  I have  been wearing a brace like this all last week to try and keep my shoulder in place. It seems to work for the first 3 days of wearing it, then after that it  starts to pull and feel painful on the shoulder. But the shoulder wrap part of this brace really helps when you need something to just keep it snug.


Click here to check out this brace

I also use these shoulder wraps with the built in ice and heat packs. These are great for when you are having a spasm and need the muscle to relax, of right after a dislocation.



Click here to check out this brace 


I am not sure what to do at this point. The only thing that sounds to stop this entirely would be to have a full shoulder replacement. I am 22 years old and I think that is going a bit extreme. But on the other hand.... I cant keep living my life in and out of slings, and having my shoulder pop out all the time, with constant spasms.

If anyone else has gone through this, or has any suggestions please let me know.

I will be meeting with the Dr. again within the next week and I will post an update then as to how we plan to move forward.

All the best,

KC.

Post Physical Therapy Update

      Merry Christmas everyone!

        Well my shoulder is  pretty much back to normal, which is amazing. I did my physical therapy up until Nov. 19th and it helped me regain most of my motion back. I have about 90% if not more of my range of motion restored.  I am able to reach things a bit of a ways above my head, and do my hair easily ( which is the most important thing.)  The surgery was most definitely worth it.

          I do have trouble getting  in and out of some shirts  that have a tight seam in the shoulder.  ( I learned this the hard way, and my Husband had to cut me out of a few of my all time favorite shirts.... sad day.)  However I have learned that  Knit or Polyester tops are my best friends, with the extra elasticity it helps me maneuver my shoulder out of the sleeve in a more comfortable fashion.

         Sleeping is still a challenge. I will most likely never get to sleep on my stomach again, for the way my arms end up when I do will cause me to dislocate. But I have found that  using a wedge pillow underneath my other pillows helps support my shoulders enough to be comfortable. I do  get mini spasms every night before I go to sleep.  Taking the Cyclobenzaprine really helps reduce the spasms so that I can sleep more comfortably.
          The spasms at night occur mostly when I had a super strenuous day, like lifting heavy things or sitting at a desk for too long. ( The angle and constant repetitive motion with typing for many hours really does put a ton of strain on your shoulders.)  I have gotten a few typing pads to help angle the keyboard to make it a bit more comfortable.

          Other than that life is getting back to normal.:)  I do have to be careful still but I can rest a bit more easy with knowing the surgery was a success and it shouldn't dislocate anymore. My right shoulder has improved quite a bit, so I think we can hold off on doing the same surgery next year.

  I will submit a follow up post in the next few months to provide an other update.

      Happy Holidays!

Finally had surgery!

On June 16th of this year, I was opening the door to my car in the parking lot outside of my office and my left  shoulder dislocated. It took everything I had to suck up the pain and drive myself home. The hour long drive felt like an eternity. I was halfway home  when the left shoulder  dislocated  its self again while I was driving on the freeway. I pulled off the road and cried my eyes out for about 20 minutes before the muscles had a spasm and set itself.

After calming myself down, I was able to drive to the next closest town and have my husband pick me up.  The spasms continued for the next several days, and I could not stand it. I decided that I could no longer live with this pain, and constant anxiety of wondering when its going to dislocate randomly again. Will it be in my next business meeting?  When I am at the grocery store reaching for a box of cereal? Or when I brush my hair?   It was getting so bad, that I could not do anything with my left arm without causing severe spasm episodes.

I then decided to meet with the orthopedic doctor who diagnosed me back in 2005.  I met with  Dr. John Douglas of Tooele Orthopedics & Sports Medicine on June 22nd, and he ordered an MRI for me. That Wednesday I did the MRI, and it was excruciating. A 1 1/2 hrs to 2 hrs  appointment turned into 5 hrs.  My shoulder had constant spasms  in that claustrophobia-nightmare-of-an-MRI-tube. They could hardly get any pictures that wold work, and I was having panic attacks because my shoulder was starting to have partial dislocations in that tiny tube! It was miserable. I asked the Radiologist if they could just knock me out so they could get what they needed, He wasn't very nice and told me to suck it up.  ( Rude) .  Finally we were able to get A picture that would work, so I was very glad to go home.

We met with both Dr. Douglas and his colleague Craig Packham, and they said we are doing surgery on you Monday ( June 29th).  He said that he wanted to create a bumper around my joint with my muscle to prevent further dislocation since my shoulder was ridiculously loose. Being someone whose never had any type of surgery before, I was very nervous and wasn't sure what to expect. However I trust Dr. Douglas so I agreed to the procedure, and  tried to manage my anxiety that whole weekend.

Monday came and I arrived to the hospital at 10 am. They wheeled me back to the surgery prep room ( I have no idea what its called, but you know what I mean.) and there I changed and they stared me on some IV's. I had my sweet husband beside me, and my darling father in law there for support.  Two doctors came in and did a nerve block on my shoulder. OH....MY...GOSH!!!! Never ever ever will I have that done again!  To be honest, I have a terrible pain tolerance, but OMG, that was worse than a dislocation. I am going to go into a bit of graphic detail here, but they stuck a HUGE needle down the side of my neck and instantly I could not feel my arm.

You know in Harry Potter when Professor Lockhart ( the dimwit ),  "accidentally" removes all the bones in Harry's arm? My arm moved like that. I could see that my arm was moving, but it felt like it wasn't there. It was the most bizarre and terrifying thing for me.  I was given some sedation, but I was still conscious. I remember yelling at my husband and crying that they took my arm away! ( So funny now, but at the time I was so scared.)  I then had two nurses come and wheel me back to the OR. I was crying and having a such anxiety. They moved me onto the operating table and the sweet anesthesiologist told me to breathe, since I was hyperventilating like crazy. She then put a mask on me when I had calmed down and said, " Think that you are a pretty princess in a castle-" Wham! I was gone.

I woke up at 4:30 that afternoon all wrapped up in a sling and completely disoriented. My Husband and Father in law were there next to me, which made me feel safe.  I had two nurses who were just adorable. They had me drink and brought me little packs of Oreo's. ( I am an Oreo addicts-I swear that stuff is like laced with something). Dr. Douglas came in shortly after I woke up, I was still kind of out of it so I don't remember exactly what he said. Per my husband, he said that he was so pleased with the job he did and he was confident that this would solve my problems.  He said the space between by socket and ball joint was ridiculous, he could drive a truck through there ( More like he could fit two fingers in between.). After speaking with him, and getting a little food in my system I was able to go home. Our dear sweet friends brought over some Panda express( my fave) and we all just ate and watch movies, while I was in and out of it all.

At 11 pm that night things though got out of control. Most of the pain medication wore off, and I was starting to feel pain. My shoulder that they just did surgery on started to spasm under all the bandaging and the restraint it was in. My body was not sure what happened to my shoulder and was freaking out that it couldn't move the way it used to. In a way the shoulder felt claustrophobic and started to spasm in order to feel some sort of relief I am guessing?  My husband took me to the ER because I was screaming from the spasms and the severe pain it was putting me through. We also were worried that if it continued to  spasm  hard it could dislocate and rip out all the stitching he just did.

The Doctor in the ER was really nice, but he did not know much of what to do. So he ordered morphine and a few other pain killers for me to help me relax.  Every 5 minutes my shoulder would spams hard causing me to cry out in pain. It was very difficult for me, and for my husband because  we had just gone through this surgery, and now we were worried that it would rip things out and we'd have to start all over again.  ( No thank you- No nerve block! )

By 3 am nothing seemed to be working and I was still having the spasms. He then loaded me up on more medication to see if it would help.  My heart was barely beating, since I was on so much medication. My husband was freaking out because alarms were going off saying I wasn't breathing enough and the one nurse ( She was awful) completely ignored him and  just would tap me a little and say breathe and then leave.  The ER doctor called Dr. Douglas at 4 am and told him what was going on. Dr. Douglas was furious that he put me on so much medication, he said that much would make my heart stop!  Scary!!!  So by 6 am, I was still in pain and nothing was working. My mother in law came to sit with me while my husband went home to get some rest.  The ER Doctor came in and said that the only other thing he could do is a nerve block. I said HECK NO! So I did some breathing exercises to calm down the anxiety ( Its amazing how much breathing can calm you and your muscles and just relax everything), and my mother in law took me home to her house so I could rest more comfortably on their amazing sectional.

I stayed at my in laws for  3 days while I was adjusting to everything. ( They have the better couch.) I was on lots of pain medication, from Oxy, Cyclobenzaprine. etc. I was able to manage my pain and spasms with those. I wore this obnoxious shoulder sling with a bumper on it.  I was unable to shower  for two weeks, and  my husband was in charge of washing my hair.  People say recovering form surgery is miserable, and boy do that have that right. Not being able to shower, feeling greasy, your hair is greasy and in knots, you cant dress yourself, and you need help to do everything.  Sleeping is miserable- I am a stomach sleeper and I had to convert to blasphemous back sleeping. Did I mention everything was MISERABLE?

After about the 3rd week after surgery I was starting to feel lots better. I wasn't taking pain medication and I was becoming a bit more active ( Yes I gained 10 pounds from taking  a month and a few weeks off to recover. )  I was able to go back to work towards the end of July.  I am a Travel Agent so I sit at a desk all day, so I was able to sit and work. I had to type with one hand which made things difficult, and slower. However I worked hard and did what I needed to do to get the job done.

After my 2nd week back to work, my right shoulder began to start the spasms like my left one did prior to the dislocations. It was so bad I could not hold a phone to my ear, carry my purse, or hold anything in my hand without it flying across the room after my spasm. ( So embarrassing... I was carrying my bowl of soup back to my desk at work- Had a spasm and flung it all over my cubical.)  I then started to take things a little more easy. We had a big deadline at work, and the gal who was supposed to cover it  was out of vacation for 3 weeks, so I was the only person available to help with this. I had to arrange several hundred peoples travel within a week.  I worked 16 to 19 hour days ( and weekends) for a week and a half straight in order to make this happen.  That push far too much stress on my right shoulder since I only had the one hand. After slowing down and doing what I could do without killing myself, things got better.

I was able to get my sling off on Aug. 11th, which has been very nice. I wear it if I know I am going to be in a big crowd of people or if its hurting pretty badly.  I started my physical therapy on  Aug 18th, and that went well. The Physical Therapist, Nathan Ploehn at Mountain Land Physical Therapy Tooele is awesome. He spent the first 20 minutes of my session talking to me about my shoulder and what exercises they would do to help get my range in motion back.  He did some stretches to see what my limits were ( I tried to be a tough cookie- but I could only tolerate so much pain.) He was very gentle with me and did not do any movements with my shoulder that I was uncomfortable with.  He said the first thing he wanted to work on was relaxing the muscles in my shoulder, because I have  anxiety and I am tensing up my shoulder too much.

I have never had PT before so everything was all new to me. At first I really hated the muscle relaxer massage pad thing ( again- I have no clue when it comes to medical terms so please bare with me.) it really hurt at first, and then within the last 5 minutes of it being on I finally felt good.   They did some stretches and I pushed my self. Surprisingly I wasn't in any pain afterwards, but I am sure my next appointment will be even more challenging and will have me sore.

Well, that is the update for now. I have physical therapy twice a week until November. I will post my progress then. Overall, YES- surgery was miserable and the recovery sucked! But now that I am feeling better and getting back to normal routine. I do feel a difference with my shoulder and I think that if I keep up with the physical therapy and work hard this will all be worth it.

If you have any questions on Living with  Multi Directional Instability, you can email me through the link on the right. If you are in Utah and would like to work with an orthopedic surgeon on ways they can help you. I highly recommend  Dr. Douglas and Craig Packham. They are amazing! They listen to you and your concerns and they genuinely want to do whats best to help you.

Their details are below! :)


http://tossortho.com/
 PHONE (435) 833-9180

2014 Update

 It's been a few years since I made my last post.  I have not let M.D.I. get the better of me!  Over the years I have learned to accommodate my limitations and work with it.  I know what agitates it the most and do all I can to prevent it.

Main Agitations:
Over the head movements with our without added wights.
Applying too much pressure to either side of your shoulder.
Lifting heavy objects.

This sounds like it limits a lot of your daily tasks, but you can still work around it live a normal life.

1. Exercising-  Cardio is an EXCELLENT way to  keep in shape with this disorder.
                       Minimal light weight lifting helps. You have to build up the muscle around your shoulders to help the muscle stay in place and hug more tightly to the bone.  You already have a loose joint, a loose muscle surrounding it isn't going to help. Don't push your self too hard with the weights,  having this disorder is not ideal for becoming a heavy weight contender.

2. Drink the juice- Faithfully drink Joint Juice.  Joint Juice will help the cartilage in your joints to stay strong, and  prevent  a lot of joint pain. After drinking it for so long you feel like a different person, you have more energy to get out of bed everyday. Your joints will always hurt when the bad weather rolls in, but this stuff makes it barely even noticeable.


3. Accepting the limitations- No you can't do any cant to any crazy over the head sports or exercises, but work with it.  You can still dribble a ball and do a short shot, without fully extending your arms above your head. .

4. Live -This disorder has helped me find new talents and activities to do. Crafting, Painting, SHOPPING( That's my favorite),  Cooking - I  have moved from microwave pancakes to the real thing! There are tons more activities you can still do to keep you  busy and not focusing on the limits.

5. Keep Positive- Yes, it severely sucks waking up in the middle of the night in extreme pain  from your shoulder or hip popping out in your sleep. You will be okay, ice it and  keep your shoulder in a tight sling and wrap.  Give it at least 2 days before removing it. Depending on the severity, you might need to keep it in the restraints longer. However you can still go about your daily tasks, while letting it heal.

You will always have times when you feel down because you can no longer do something that you are used to doing on your own. But,  the good news is  its not a life threatening disease. You wont die because your joints pop out. It's a very uncomfortable and inconvenient disease.  My Great Uncle and his 9 brothers and sisters had M.D.I. Back then doctors didn't know how to treat it, and none of them were able to finish school.  Now  with this amazing technology we have, doctors know how to help us deal with it.

I am waiting for some sort of bionic joint that they can replace mine with to become available, then maybe  I wont have to worry about the dislocations. Until then I will just keep on swimming.

Being A Collapsing Toy

It's hard to not judge a person who has a disease that you can't see. One day the person walks into school with smiles and no cares. Then the next day they are in a sling or a wheelchair in tons of pain..
                Multi-directional Instability is something that I was born with. It is a hereditary disease that in my family skipped a few generations to me. The disease causes mainly your shoulders to dislocate, but as the years go on... your hips, fingers, elbows, and knees start to. You might be asking, " Isn't there  a cure for this?" The Doctors I have advised that physical therapy is what will make it better. With physical therapy it will strengthen the muscles around your joints so they don't dislocate as often.  Strenuous movements can cause it to happen while you are doing your work outs, and more often then it should be. There is another procedure doctors have recommended. It is an operation where they shorten the ligaments around your shoulder and limit your rotation. However,  you cannot control when you have muscle spasms and dislocate. If your ligaments are shortened and you dislocate, you rip out all the stitches they created to shorten it and you stretch it back out.
                How can people live with their joints popping out all the time? Its painful and people don’t understand how one day you can get up and have and active day, then come home and be in bed all the next. I feel like... a collapsing toy. You know those little wooden toys held together with string, once you release the pressure they fall apart at the joints. This all started I was 12. I just moved to a new place and on the fourth of July was the first time I ever dislocated. I was dancing of all things, and there it went! We thought it was just a freak thing and didn't think of it till that December when it happened again. We went to a orthopedic specialist and he diagnosed me with M.D.I. No more softball, no more horseback riding, no more PE.( I guess that was one thing to be grateful of.) I then had to have special accommodations in the school. Being allowed to leave class five minutes early so no one bumped it out, extra sets of books in classes so i never had to carry anything but a notebook and a pencil. The kids, being in junior high weren't to....open-minded and didn’t respect my accommodations. They made fun and thought I was weird, so I started leaving class with all the others, and what happened...... I got my shoulder knocked out in the middle of the halls. Home schooling was what had to happen next. I liked having to be at home for a while, but then it became quite boring.
  
            Things to do if you have M.D.I

• Drink Joint Juice. It works wonders and you can go about your day without excruciating pain.
• Ice pack the dislocated area for as long as you can stand it.
• Avoid carrying bags and other objects that are too heavy.
• Aleve is a great pain reliever.
• Avoid strenuous work.
• Get a pet. They are great company when you are in bed for long periods of time.
• Limit over your head movements.

.