Noticed I Had Something Wrong On Left Side Since I Was 16.

I'm now 44, my name is Jim or James.  I live in the Seattle, WA area, Auburn, WA to be exact.  I'm really glad I found this site, totally at random, I have to admit, but very happy indeed.  My life has been difficult to say the least, because of my having Sprinkle's Deformity.  At 16 I noticed I was developing much differently on my left side of my chest and shoulder area.  Everyone else seemed to notice as well, and as we all know kids can be cruel.  But God did seem to be looking out for me and made me pretty tough and a very good athlete.  I was pretty fast and could usually out run the mob that seem to want kill me because I looked the way I did.  If they caught me, I found out as well as they, that I was a good fighter, they eventually learned it wan't worth their while or in their best interest to keep doing it. 

My point to that story is that with Sprengel's you always need to keep fighting.  Don't let it get you down if it is possible.  I have been to the lowest lows dealing with this both mentally and physically.  Since about 2001 is when I started noticing it becoming more and more uncomfortable.  My Sprengel's affected my left pectoral is major muscle missing, missing my left lattissimus dorsi, terres major missing, scapula 3 to 4 inches higher on left, and now in great pain. 

I feel like i'm on my own little island with no help or rescue coming anytime soon.  I am very glad that after 44 years I finally have something in common with another human being like me.  I have never met or have known anyone else with this in my lifetime, and now I have you guys.  It does feel good, even being a big well built tough man, it brings a tear to my eye.  I know I don't have to explain why I'm tearing up because I know you already understand why.  Thanks for listening, I hope I wasn't boring or sappy, and I know I don't know you, but I will always have your back and would always be there for any of you, thanks, Jim.

Yournotalone Yournotalone
41-45, M
4 Responses Feb 26, 2010

Hey Jim! I love Seattle. Haven't been up that way in years. <br />
I live next to Chico in CA, but was raised in the Salinas Valley.<br />
So sorry to hear your plight is so similar to my own. I had corrective sugery when I was 2 Yrs, but it was bad enough that it still showed quite a bit. I got beat my first few years in school, until I enrolled in martial arts to defend myself from the cruel world. Through my 20s I taught martial arts at an academy and found other who were in our unique situation, but not with Spengels or Klippel-feil. These kids had Muscular Distrophy and other ailments. We all felt a special connection with eachother. <br />
I added insult to injury when I was in a motorcyle accident where I T-boned a car that cut me off. I have been disabled for many years now. I live with chronic pain, but have a well stocked supply of pain killers from morphine to hydrocodone to get me through a night sleep. If you are in pain, my friend, I would suggest getting some relief before the stress from being in pain causes you to go postal. <br />
Good Luck, Jim.

Hi Jim,<br />
I just found your story and I am very sympathised with you.<br />
My daughter is 21 years old and she had Sprengle's so I know how you feel.<br />
I am looking for some treatment hopefully surgery for her.<br />
Please let me know if you have any information about that.<br />
May God bless You

I felt u , men :( ! yes, gotta be strong! for the 1'st time these days i cry'd too :( because it's hard to confront with this, no pain for me ..body/physical, but the fact thaT not looking the way i wanna. I try to look normal in clothes it's hard, it's exhausting, because of that.. these days like i said, i broke down' in tears, goTTA go to a doc. and hope operation or something next thing! peace all!

Your'enotalone, <br />
Yes, truly none of us are alone in our chronic diseases, whether they are visible, or invisible, to most. And because of this, we are all together. I am sorry for your pain, and must deal with mine on a daily basis. I try to trick myself, and box my pain up, and put it up on a high shelf, all tied up, and almost dafre it to come out, sorta like a compartmentalization skill I learned.<br />
good luck, <br />