Hey everyone! In 2003, I was diagnosed with a rare condition, called Madelung's Deformity, in my arms--specifically, my wrists. The bones in my arms grew faster than the rest of my body, My ulna (the longer, thinner bone in the forearm) became bowed and more pronounced, and sat on top of my wrist. It was much more prominent in my dominant, left arm. This condition causes chronic bone and nerve pain, and also can cause muscle spasms in my arms, as well as arthritis in my hands.
In February of 2013, I had radial osteotomy surgery performed on my left arm, and a plate and bone graft inserted, in order to make the bones look more normal, and to relieve some of the pain. Unfortunately, the surgeon refused to treat me properly, during the recovery stage, and it took almost 6 months for my bones to start healing together again. Along with this, the improper care of the surgeon also caused me to have flesh needlessly burned off my arm, and severe nerve damage.
Because of this, I was unable to complete my Baking and Pastry degree and ended up with a Liberal Arts degree and thousands of dollars in student debt, all for nothing. Since the surgery, I have had more complications than ever, and am in chronic pain, every single day. I am unable to work normally in any setting, due to the constant pain and decreased mobility in my arms, and the medications I'm constantly given do nothing to relieve the pain. It has gotten to the point where I can no longer type, write, or lift/hold anything for more than a few seconds, at a time. I can't sleep properly, becasue of the pain, and I can't do anything that a normal parent should be able to do: push their kids on a swing, give piggy back rides, teach them how to ride their bikes...No doctors I've talked to have much, if any, knowledge of this condition, so they don't know exactly how to help manage it.
Over the past few months, the pain has been spreading up my arm, and now I have neuropathy in my left arm, from my chest to my fingertips. I also have acute compartment syndrome in my shoulder, meaning that the muscles in my shoulder, neck and upper arm aren't receiving the oxygen they require to function correctly. I have been going to physical therapy several times a week to try and correct this, and the doctors all agree that corrective surgery will more than likely be necessary.
I am currently on medical leave from work, and due to lack of communication between the insurance company and my Physician, I have not received any regular or disability pay from work, in over a month. I am not able to provide for my children as I was before, and all of my savings have been exhausted. I've moved out of my apartment to try and save money, and I am trying to move to a place where the climate is better for my bone pain management and where I can find better doctors who specialize in this condition. After 13 years of struggling with this, and getting the runaround from almost every single doctor I've seen, any help would be GREATLY appreciated! Thank you so much, in advance!!
- Brittney Scaccia
- Metallica Love
- Kailee Wright
- Lindsay Scaccia
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