After being released from the Chicago hospital, all my family and I could do was wait for the doctors to get back to us and tell us what to do next. The shaking and weakness was still on the right side of my body two and half weeks after the initial start. Life didn't stop. There were still many appointments to go to and now my mom had to load up the wheelchair in the back of the car in addition to me. Even navigating around my own home had a whole new look about it. When I would attempt to walk, my dad would have to stand behind me and hold me around my waist so I wouldn't fall. Since our house has stairs, I needed to physically crawl up them to get to the top. This killed my shoulder blades like no other but I didn't want my family to help me. When I would come down the stairs I had to sit, and scoot down like a baby. It was so hard to wrap my head around the condition that my body was in. I had just turned 18 on June 25th. To me it was not a day of celebration, so there are no pictures of that day.
One day we got a phone call and it was advised by several doctors in the Chicago land area that I needed to go up to a well known Minnesota hospital for more extensive testing and get seen by the "best" doctors. I initially thought it was a good thing that I was going up there. WOW was I wrong. I got there July 8, 2007 and checked into the Marriott; all of my testing would begin the next day. From July 9th-July 13th I had so many tests and met with several doctors. Some tests such as x-rays, EKG, and urine collection weren't painful. Others like blood tests weren't exactly painful, however it made me sick. I remember sitting in the wheelchair and the lab tech came over carrying a basket of blood tubes. I assumed that was her stash for the morning. Little did I know, all 18 of those tubes were strictly for me. She stared at me as tube, after tube of blood was taken with a strange look on her face; by the time she finished, I was feeling very ill and weak. My parents got me juice when this was completed; my parents were so mad that they took all this blood and knew I wasn't feeling well and didn't offer juice and cookies like they do with blood donations to raise my sugar. The reason for all of this blood was to see if I had any genetic diseases such as Marfan's Syndrome, Ehlers Danlos etc. Thankfully ALL genetic diseases came back negative. The remainder of the tests were very painful for me. The EMG is where they stick needles in you to check the communication of your nerves and muscles. This test was SOOO painful when they did it over my shoulder blades. I just laid there but wanted to scream. The other painful test was the movement analysis evaluation. I had to stand on my legs that wouldn't hold me up and raise my arms straight in front of me which caused my shoulder blades to wing out like a chicken. This was such a long exhausting test. There were wire leads hooked up to me that measured activity onto a machine. By the time it ended I was so exhausted and in so much pain. I was crawling out of my skin.
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| Life sure isn't easy sometimes |
The orthopedic Dr. S and his assistant Dr. R were very thorough and very kind. Dr. S and Dr. R said, "I had severe scapular (shoulder blade) winging. There is definitetly a problem here but the shaking/tremors have to be addressed first." The rheumatologist Dr. Y said there was nothing wrong in his area but there is a problem with my shoulder blades. All 3 of these doctors treated me like a person with respect and I felt like I was in good hands with them; they wanted me to go see a neurologist.
From there things went south. My parents and I arrived for the appointment with the neurologist. My dad waited in the waiting room and my mom came back with me. I had hopes that he would be nice because he had pictures of his grandchildren and family sitting on his desk. When he knocked on the door, what walked into the room was a very mellow dramatic evil person without an ounce of respect or kindness. It was as if the Wizard of Oz walked into the room putting on a show for us. He told me that none of the surgeries on my leg worked because I still had pain in them. I told him he was wrong. The surgeries on my legs were necessary and they did help. There was pain in the joints because all of the surgery was on my right leg except for one, and my right leg has been shaking for the past few weeks every time I would go to walk. We were not seeing eye to eye at all. Then it was time for the examination. By now I've had enough experience to know that an exam can be uncomfortable and downright painful. However, the exam that I endured is nothing less than pure torture. This doctor, if you can even call him that, treated me like I was an animal. I am not being comical. I am being dead serious.
The Wizard of Oz had me put on a hospital gown. When I walked out of the changing room, The Wizard grabbed my left arm unexpectedly and started dragging me back and forth in the room like a dog on a leash at a fast pace. I was in tears. My right side shook like crazy. I stumbled. I was off balance. My ankle, knee and hips hurt from the surgeries. I told him to stop because I just had left hip surgery 4 months earlier and I was afraid I was going to fall. He wouldn't. He continued to grab my arm tighter as I tried to get my arm away from him. My mom's eyes were popping out of her head and her jaw was hitting the floor. The Wizard looked at her and said, "Are you okay?" and she said, "What are you doing?!? Enough!!!" She told him to stop and to this day, she says, he is lucky she didn't punch him out. After what seemed like forever, he finally stopped. He then had me sit on the table and looked at my shoulder blades. He then grabbed my left arm once again, only this time yanked it above my head. I yanked my arm and body away from him trying to get away as he continued yanking it. He told me I was making it worse. I told him, "No, you are." To say the least, this meeting was not going well at all. Before we left, he recommended that I be enrolled in the pain clinic. The clinic would provide physical therapy, occupational therapy, and diagnostics. It would be a holistic experience that combined all modalities of treatment together that I would eat, sleep and breathe for the next several weeks.
We headed back home to Illinois to wait and see if I would be accepted into this program and to see if our insurance would cover it. During this waiting period the shaking/tremors slowly disappeared. My doctors here in Illinois believe I had a rare virus that had to run its course which is why all of the testing I had done came back negative. I guess viruses are hard to pinpoint. It lasted a little over 6 weeks and thank God it was not a disease. You have no idea how happy I was the day I got out of that wheelchair!!!
We got a call from the hospital in Minnesota saying I had been accepted into the pain program. We still decided I should go to the pain program because we figured doctors could now focus on what was wrong with my shoulder blades.
Boy, I never could have imagined what I was getting myself into...
A fundraising page was created to help with medical expenses. If you would like to donate follow the link below. Thank you!!
I might just leave you lots of comments here........... it's funny. I am working on this kind of thing right now too, although more for this year - so you know most of it. With my shulder I think the bad stuff about doctors took a couple of years to come out on my blog - and there is some that I (still?) have never gone into in detail. There is a 'professor' - here, that's an accolade - ('the professor' is said in our house probably in the same tone you reserve for 'miss pumps'). I really wasn't in his office for very long, but he yanked my arm and up down in the manner you describe here. In fact, to be honest, I've come to the conclusion it's how they are taught to do a shoulder exam in Scotland. Yeah. Not joking either. My mum still wishes she had "rugby tacked him"......... LOTS to talk about!!
ReplyDeleteI have had 4 EMGs total. After the first one, they did every muscle in my upper right quadrant. I couldn't walk for 3 days. The last 3, by our friend who is the neurologist at UPenn. "Just one more needle, sweetie, just one more needle....... you're doing SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO well...... OK, I lied, last one this time, just one more needle sweetie....." Still bloody hurt, but he was the best cheerleader-neurologist ever! At least there were fewer needles each time.
Although after final dignosis, he wanted to be *really* sure before I went to KY. So he wanted to test rhomboids and traps. My idiot father planed a f'in 'surprise' EMG because I was going for a CT scan anyway. I was MAD. After 3, I'd decided next time, ALL my ice packs were going in the car for the next one. Clearly he didn't know that.... I was so mad at him. AND mad at my mum because she knew (and forgot the ice pack plan). His reasoning was it was so I wouldn't worry about it. I wasn't bloody worried about the test, it was the pain afterwards that was rubbish. That ICE helped!!
*rugby tackled..... and other typos.
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