The Romberg's Connection 2009 Survey Results

Experienced Head Trauma

Page 60. IV. Triggers (page 1 of 2) cont.: Experienced head trauma
1. Please rate this trauma as:
Rating Responses
% of Number responding
Major trauma12
Minor trauma37
Number responding = 49 / percent responding = 34% of total respondents (143).

Page 60. IV. Triggers (page 1 of 2) cont.: Experienced head trauma
2. Describe the location of this trauma:
Count Responses
1 Forehead, above right (affected) eye.
1 I had a garage door fall on my forehead.
1 Right side face
1 Huge head bang - knocked unconscious in road accident.
1 I got kicked in the left jaw and chin with a big man's foot while i was taking swimming lessons while living in Louisianna. The same week I got pushed on a log in the water while I was playing with a boy. It tore up my right back, I was bleeding from it. I was 8 years old when this happened.
1 Neck
1 I cut my forehead open on the left side at the hair line, approximately intersected at the part line.
1 Fell out of a car and smashed my head on the curb. Car moving slowly, but still remember the accident. Happened when I was very young, maybe 3 or 4 years of age.
1 When I was approximately 2 years old, I was standing on the toilet seat (my sister was brushing my hair) and I wiggled away from her and fell into the bathtub, hitting the side of my head, (I don't know which side).
1 Hit with a baseball bat on my forehead at approx age 7. Also, was propelled onto a propane tank on which I hit the back of my head and also hit it again as I fell onto the cement base of the tank. (Brothers!!!) Approx age 7. Both required trips to the ER. (My poor Mom)
1 Chin. Also fell on face, but we don't remember what side.
1 I was in a car accident where the car was rolled and I hit my head about 8 times as the car rolled.
1 Forehead broken
1 Got hit incredibly hard on my head with a moving wooden swing. This incident took place about one year prior to start of PRS.
1 Experience head trauma as a child. Playground accident where I fell to the ground and hit my head.
1 Stitches in upper lip due to injury of being hit with snow shovel.
1 Center of forehead
1 I fell on cement steps and hit my nose. The symptoms began to present after the fall.
1 Went over handlebars of my bike and landed on my face on the pavement. Also fell off a picnic table and landed on my face. Also fell off the monkey bars and got a concussion (I was a pretty active/accident prone kid!).
1 I was in two minor traffic accidents. My car was rear-ended two different times, about a year or two apart in the late 90's. I experienced some neck pain on my right side.
1 Middle top of forehead
3 Forehead
1 At age of 2 he got a trauma from a wood in the same area, where he got the coup de sabre.
1 Hit head against sidewalk - loss consciousness for a very short time, mild concussion.
1 Wore the helmet for approximately 8 months from age 12 - 18 months.
1 Small scratch from pet dog right at the spot where it started.
2 I was delivered by forceps and badly bruised.
1 Ice skating rink
1 Top of head
1 1. Top of head, possibly face
2. Chin
1 Fall on head on age 4.
1 Fell and had a hard knock on the head.
1 I was ejected from an auto when I was nineteen. I suffered an intercraniocerebral trauma. This left me with diplopia and poor strength and miscoordination of my left upper extremity. When I was 52 I had strabismus surgery on my eyes. One eye had to be rotated and the other eye had to be raised. Condition was not 100 percent corrected, but close.

When I was ejected from the car I must has landed on my head because I had a cut about 25 mm. long on the top/rear of my head. In the area of the normal cowlick a person has.

1 She bumped her head on the floor, falling from Mom's hip down to the floor.
1 Fell, hit forehead on brick steps, had stitches.
1 Right jawline
4 Head
1 Face
1 Struck forehead when she fell and needed stitches.
1 This blunt trauma occured after the orginal diagnosis of the PRS, but it triggered it out of remission and resulted in the seizures and lesions.
Number responding = 46 / percent responding = 32% of total respondents (143).

Page 60. IV. Triggers (page 1 of 2) cont.: Experienced head trauma
3. Comments for Experienced head trauma:
Three layers of stiches for a deep laceration that went down to skull.
Ran into a tree while snow tubing at 12 years of age.
Got hit while playing volleyball, could not move neck for three days, went to hospital with sprained muscle.
Unsure, but typical childhood trauma. Fell about 10 feet from a tree at age 7.
I may have had a head trauma when I was born, parents still not talk about it. Had an inclination from an Uncle something happened.
When I was 5 years old I was running with my head down and ran full force into a corner of a wall. It knocked me down and cut my head open where I needed approximately 5 stitches.
I'm told I use to rock back and forth and bang my head against a cement wall and other surfaces when I was a toddler. I suspect this was due to severe neglect as an infant/toddler. But, perhaps, it was a response to pain with the onset of Rombergs? Since I was young I don't know if the onset or active part of the Rombergs is a painful process. I was 3 when the Rombergs began and from looking at pictures it looks like a majority of the atrophy in the forehead happened rapidly, though the indentation in the nose happened later.

My parents are of little help with information.

See above
I am not sure if this caused it to happen, but did not have any problems until about a year after this accident.
Fell down stairs at an early age and hit head.
Fell down the stairs and hit the wall. Both eyes were black and blue.
Forehead broken (yes it sounds strange but it is true) after I had fallen from a hill. This was in 1972 the year that PRS started. Back then the technique wasn't that good (I lived on a small Island in the Caribean) and the doctors were discussing what to do. After TWO WEEKS, having me complaining about severe headaches, they decided to operate me anyway. Time was running out. Everthing seemed to be ok after that. Later we thought the doctors may had triggered something causing my chin not to grow further. Now we know that isn't the case and that it is PRS.
Fell onto concrete floor and needed stitches on my forehead/
Fell of bed. Nothing seen in cscan or xrays.
Egg sized bump from being hit by a rock followed by a thin white line down this same area. Five years later thin indented line appeared vertically in same area and progressed through scalp to crown of head.
Slammed the boot of my car onto my head. Lock mechanism hit my head first. I nearly knocked myself out and there was a dent where the lock bit hit surrounded by swelling and bruising. I didn't even really notice the dent hadn't gone and had gotten bigger until around two months later.
Banged his head requiring stitches.
Downfall from table onto back of the head (aged 1).
Downfall from horse onto (helmeted) back of the head (aged 3).
Might have been a coincidence.
Fell over on to my head. Blacked out for a few seconds, not concussed. Not sure if it was in 2002 or 2003.
Don't know if this is minor or major.
Sledding accident, hit a fence post knocked unconscious and had concussion.
1. Had a difficult birth. Doctor used suction/vacuum 31 times in failed attempts to extract baby. (hospitals usually only allow its use 3 times) Baby had to be treated for headaches at birth. Was not breathing when born.
2. Fell on playground and hurt chin. Had to have stitches. Happened about 3 months prior to the first symptoms.
She went to the doctor as a result of her fall and the doctor said she was fine. This was at about 10 months of age.
Head trauma was on upper right forehead. Parry Romberg is on left side of face. Trauma happened around the age of eight. Parry Romberg is visible retrospectively in photos starting after that age. Did not become significant enough for diagnosis until late teens.
Skating fall, not extreme, just enough to leave a bruise.
Not sure if its characterized as major or minor.............. fell on my head when I was 5, running around a pool.............. went to the hospital, lost vision for awhile and i think I had a concussion also.
Number responding = 27 / percent responding = 19% of total respondents (143).

Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.