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The story of my life......(thus far)

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Old 04-20-2011, 11:40 PM   #1
Join Date: Apr 2011
Location: Colorado
Posts: 3
Notsocrazy HB User
The story of my life......(thus far)

I was born with several birth defects. My pain is mostly related to one of those birth defects which is so rare that it is actually listed on a U.S. Government website of Rare don't I feel special. It is called Sprengel's Deformity and it affects my right shoulder, neck, and back. However, I wasn't correctly diagnosed until I was 19. I began seeing a pediatric orthopedic/spine surgeon when I was about 6 years old. I had scoliosis that they were keeping a close eye on. Once I entered junior high, I became involved in sports and really started complaining of right shoulder pain. My mom repeatedly took me to doctors for this and no one would even listen. We actually got fired by the pediatric orthopod. We weren't sure why, so we obtained my medical records from his office to take to the next doc. Guess what he said about my mom and I in his notes?? He said there was nothing wrong with me except that my mom and I were attention seeking and accused my mom of having Munchausen Syndrome. Wow, pretty harsh words for a specialist who totally missed my diagnosis!! Anyways, I finally got diagnosed when I was 19, but no one could really tell me anything about it due the rarity of my condition. I had pain off and on for the next 10 years and intermittently sought help. I pretty much gave up on ever feeling normal because my condition is only operable if caught before age 8. Well, when I was 31 I had an accident in my swimming pool. I hit my head on the bottom of the pool, and ever since that day it feels like someone is sticking a hot poker in my neck. I have had xrays, MRIs, and anything else you can think of. The specialists at Mayo Clinic decided there way nothing that could be done since my rhomboid muscle on the right side is totally atrophied. Also, my 6th cervical vertebrae is turned sideways due to my deformity. I have significant lumbar disc degenerative disease, and overall back pain due to the muscle deformities in my back. I have daily headaches and muscle spasms of my trapezius on both sides of my neck. Sometimes my right arm and hand go numb due to the compression of my brachial plexus. To further complicate matters, I got very ill one year ago with a virus that landed me in the hospital for a week and out of work for 6 weeks. Due to that virus, I now have viral arthritis in my hands and feet. If the weather is wet, my whole body aches, and I move like a 90 year old. I am now 35 years old and feel like I am trapped in the body of a 90 year old. I have 2 small children, a very understanding husband, and a full-time job. I am so worried about my future. How long will I be able to work? How much worse can my pain get? What in the hell does my future hold? Quality of life? I have a pain management doc, but the meds just keep me from crying most days. I currently take 5 7.5 Percocet a day and it just barely takes the edge off. My doc won't hear of increasing my dose or trying new meds. Ok.....thanks for letting me share

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