The Romberg's Connection 2009 Survey Results

Scalp Affected

Page 49. III. Associated Symptoms (page 4 of 4) cont.: Scalp affected
1. Please select how the Scalp is affected:
Scalp is Affected Responses
% of Number responding
En coup de sabre (indentation)32
Tenderness (Occipital neuralgia)20
Thin skin33
Tissue loss28
Other (Specify) 6
Number responding = 54 / percent responding = 38% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.

Page 49. III. Associated Symptoms (page 4 of 4) cont.: Scalp affected
2. Comments for Scalp affected:
I get rashes on my scalp that are full of pus and very scaly. Sometimes it will spread and go down my neck and to my eye lids and forehead. I have a very flaky and itchy scalp too. The only time I get this is when i have been under a lot of stress or on rare occasions get my hair colored or use a different shampoo. Also some medications can cause it too.
There is an indentation on the right side of my scalp.
3 very deep 'dents' in scalp-90% of top/front scalp
It's only thin skin and less hair than on the parts that are not affected.
My MRI noted "Thinning of the scalp."
The scalp was affected from the surgery. I had a section of scalp removed and implants in the lower right side of my face. 90% of the hair grew back but there is a bald spot on the right side. This bald spot is covered by hair but is tender to the touch and the skin is very thin and discolored.
Even a slight bump on something of the indentation will cause me to nearly pass out. It's very sensitive and I am on automatic to protect that area.
Terribly, loss of alot of hair, I have about 8 bald patches to about 12 patches. All my hair has thinned out.
The scalp area has been affected only since it has restarted again a few years ago and has become a major problem for me. It is spreading faster and further than it ever did.
a few little bald spots
indentions and hair loss
just very sensitive
I had a bald spot in the middle of my head when Romberg's first happened. Also on my left side of my head it is slightly indented. The last surgery I had in 2002 he fixed my bald spot by cutting and stitching it back together.
bald spot right side with odd skin there looks like a burn
Hurts to comb hair. Very sensitive to touch.
There is a long strip of the scalp that has severe indentation or soft spot, and no hair grows in this area.
En coup de sabre is 3 in. long on right side.
Number responding = 17 / percent responding = 12% 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.