Hi!
I want to give all the new folks a very warm welcome!! I know I am very, very late with this but life has been crazy here lately. I am Allison and am 37, married and we have two children, Betsy age 8 and Brian age 5 and we live in Northern New Jersey. I am a disabled nurse. I have Engellman's as does my twin sister and my dad. My twin sister and dad were diagnosed as young children and they both have it in their legs and arms. I was not diagnosed until I was adult. My Engelmanns is primarily in my skull though i do have it in my left leg as well. I was initially misdiagnosed and because of that I was given treatments that actually ended up making me worse. I ended up suffering a brain stem herniation and found the neurosurgeon that I see now just in time. Two days after my initial visit with him I slipped into a coma and was not expected to survive. I thankfully did and the Neurosurgeon had me see a Pediatric Neurosurgeon that specializes in Craniofacial disorders knowing I would need another surgery to thin down my skull. When I had that surgery done they took a sample of my skull (which was over five times thicker then normal) and sent it to Washington DC to some researchers. I also had a Research doctor order a bunch of tests which finally confirmed my Engelmann's diagnosis. All in all I have had five brain/skull surgeries, over 40 spinal taps and several other related surgeries and procedures. Thankfully my last skull surgery alleviated the daily pressure headaches that I suffered from for years. All the spinal taps though have left me with severe nerve pain throughout my back. I have a great pain management doctor and he helps keep my pain down to a mangable level. Just in the last year the Engelmann's in my left leg has started causing pain that comes and goes.
My dad and my twin sister both had pain as children. I remember my sister having pain and limpling as a child. The kids would tease her because of her limp and I remember wishing I could have it instead of my sister. As my sister grew up her pain became less and less as did my dad's and other then a slight limp they both have no other symptoms and haven't for many years. My sister and I are fraternal twins. As far as our children having the disorder, we will be having Betsy tested in the next few weeks. She has begun complaining of leg pain after running a lot. She is also the slowest in her class. When she was 3 we took her to an orthopedic surgeon because she was falling a lot when she would run and her feet turned inwards and he said it was a fairly common problem and she would most lilely grow out of it by her teens. It doesn't stop her from doing anything and she only complaines once in a while. Our son runs like the wind and never complains of any leg or arm pain.
Now that I have bored everyone (LOL) I will sign off. Again a very warm welcome to all the new people. I would love to hear from anyone that wants to chat. My email address is ABUSHRN@optonline.net.
Have a wonderful weekend,
Allison