The Romberg's Connection 2009 Survey Results

Abnormal Sensations in the Affected Area

Page 17. III. Associated Symptoms (page 1 of 4) cont.: Abnormal Sensation
1. Please select any abnormal sensations in the affected area:
Age Responses
% of Number responding
Other (Specify) 22
Number responding = 63 / percent responding = 44% of total respondents (143).
Note: This was a multiple choice question.
This chart has a link to additional information.

Page 17. III. Associated Symptoms (page 1 of 4) cont.: Abnormal Sensation
2. Comments for Abnormal Sensation:
I get stabbing pains around all areas affected.
By pressure I mean a sudden sensation as though something is pressing on the area. Not painful.
Ear sometimes feels like it's bleeding around the outside.
Strange sensations on my right forehead, top right of my head and lots of itching on right side of forehead and my right ear.
It can be annoying at times, sometimes my face will start twitching in areas, then I have this burning sensations and sometimes it feels as cold water was dropped on my face. The tingling and burning, I am having at this moment.
Affected area cannot be subjected to cold weather, will freeze much faster than normal skin.
The pain comes from the jaw difficulties I have. The tingling seems to be active in the back of my head above my ear. I can't be positive that the itching is related to PRS, but the affected area seems to itch more than other areas of my face.
I have those sensations when it's very cold or when i'm angry, when i have temperature, headaches or teeth pain.
Slight loss of sensation after surgery.
At times the pain is so bad I feel like my head is being pried apart along the line of the indentation. The most pain killers can do at that point is take the hard edge off the pain. There doesn't seem to be a consistent "trigger" for when the pain will show up, except that it does appear to be linked to hormonal cycle, although not limited to these times. I think I am in some level of pain about 80% of the time, ranging from mild to severe. I could be having a completely normal day and out of nowhere the pain will start. It could stay mild and maybe it would be enough to go take a nap and wake up and it's gone, to coming on and becoming severe within minutes, to waking up in the night with severe pain. It's very unpredictable.

Fatigue is also a predominate issue. I have to structure my day around making sure there is time to sleep during the day. Sometimes I require a couple extended naps a day. There is no choice in this, it's like a switch goes off and I have to sleep. If I force myself to stay awake, I usually end up with a headache, if I don't have one already.

Right shoulder blade to waist affected - intense burning pain in shoulder blade area after repetitive activity.
If skin is bumped, then pain is much more than normal side of face.
I cannot sit with my head on my hand; then it hurts very much in my whole cranium - and I cannot lay very long on my pillow at night without pain.
When active, I get a tingling in the affected of head or nose.
I have tingling in my lip almost like an electrical zap. The burning is in my cheek area. It is not very strong or constant but it just feels odd.
I get severe headaces and pain around the eye, and also tingling in my right cheek and eye area along with twitches.
Loss of pain sensation in left leg - only just noticed it last week I need to get neurologist to check it out thoroughly, see if it affects the whole left side of my body (as the PRS is attacking the right side of my brain).
Diagnosed with hypotony of the left eye, very low pressure and DRY eye.
My face gets very itchy and just want to scratch it all the time. The tingling usually means that it is active and I can go for months without anything at all now.
Tingling...often associated with seizures.
My jaw tightens (like a spasm) and causes pain.
Affected area is more sensitive to cold and to pain. There is pain and tingling (tingling even into the scalp) in the affected areas (particularly when it is activated).
I think that being in tune w/ your own body, you just know something is going on. I can't explain it, or maybe having had this for so long..I KNOW something is happening to me right now, but I cannot explain it- right now the right side of my forehead just over my eye has an odd sensation where there's been atrophy, and the left side of my face feels odd too where there's been atrophy. I just cannot explain it.
Extreme pain when lightly scratched or poked.
More like not-feeling the area.
Numbness and tingling but can't says thats it's only the PRS as I've had surgery to repair some of the damage.
In the previous question on the previous screen....I do not know if her blood pressure is affected. How could one know?
I am not sure what feelings she has or had.
I don't know if its from the Rombergs or not, but the skin on my face is very dry, especially in the cold months................I also get an itchy rash on my face and neck from time to time...(feels like when one gets fiberglass on their skin)...sometimes my eyes will almost swell completely shut.......its been looked at by a dermatologist, but she couldn't figure out what it was or what was causing it.
Number responding = 30 / percent responding = 21% 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.