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21 Year Old Male With Mild Goldenhar Syndrome (GS)

Started by DDaniel1989 on 11/30/2010 1:42am

Heyy community!
The name is Darick and I was diagnosed with Goldenhar Syndrome when I was born. Thankfully, it was only a mild case. Its a very rare condition, and they do not what causes it. My father was not in the Gulf War, however he did work at Chrysler for 40 years. I could have been severely deformed at birth. Twisted spine, fusion of the neck bones, cleft palette, under developed EVERYTHING, including organs, skin tags, and probably more.

I was born with 3 "skin tags" - a little one on my left ear, one on the edge of the iris in my right eye which was removed shortly after birth, and a larger tag on my right ear. The doctor tied off the skin tags because they stuck out pretty far, according to my mom. Notice that I keep saying "right" eye, and "right" ear.

Goldenhar usually only affects one side of the body. As I get older (here I go, sounding like an old man!) I am starting to deal with chronic neck, back, joint, and leg pain. I cannot sit or stand for more than 30 minutes without serious pain. Last year, on Independence Day, I woke up to feeling like the back side of rib cage and every rib were...crippling. I walked with a hunch all day and had to sit IN the car while watching fireworks. It was horrible. Tylenol/Ibuprofen mixed was a joke. I somehow kept myself from crying. I have also noticed over the past few years, my right leg & especially my hip are in chronic discomfort, with some days being better than others. My bones and joints (all of them) pop constantly. I also have "energy releases" through my toes, where my toes constantly, every day, every 2 minutes need popped.

Shortly thereafter, I told my sister (who is a licensed massage therapist) about what happened, and she offered to take me to her chiropractor. I have to say I was nervous. The thought of someone contorting my joints and body is just a little scary. I explained to the chiropractor what happened and he examined me. He said that I was really tight in my right leg and hip. He popped the joints which immediately came relief. He worked his way up to my neck, and explained that my neck was also tight. He concluded afterwards that my syatic (

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(ughh it cut off)
my syatic nerve was pinched in my right leg.

I am in some serious discomfort on a daily basis. I guess I am looking for others with cases of GS to explain to me some of the symptoms they have and if what I am experiencing could even be from my GS. I am scared and worried. Can my neck bones fuse together? Is this only going to get worse? Is surgery going to be inevitable? I know some of these answers can't really be answered by this community, but a license physician. I have no medical insurance. What is going on? What should I do?


I cant be of much help. I dont know what GS is. I do however have poping joints all the time. I know its not normal but everyone thinks im crazy when I bring it up. Iam 30 and It feels like the poping has caused my joints to constantly be out of place. when I go to the chiro my joints pop back out within an hour of the adjustment. I do have sciatica. My mother was at one point diagnosed with a bone disease so maybe its related. Im glad you told your story your the only one I have heard of that has the poping problem. Codiene works great when the pain is so unberable you cant walk. But be careful not to get addicted. When you find something that works you can ata least have some relief unless your body gets used to it. then your back in hell and hooked.Good luck sorry i couldnt help.



I was born with GS. I was born with my back being curved so, i had a metal rod put inside my back...long time ago. I had a tumor growing on my right eye, about 1 or 2 years after I was born. Have no hearing on my right ear but, have a bit of hearing on the left...which I use a hearing aid. Have a cleft palette. And few more things. I had lots of surgeries growing up.

I am sorry about your back. Hope you feel better soon.