The Romberg's Connection 2009 Survey Results

Problems With Balance

Page 46. III. Associated Symptoms (page 3 of 4) cont.: Problems with balance
1. Has any therapy been tried to improve this problem?
Linked Responses
% of Number responding
Yes 5
Number responding = 26 / percent responding = 18% of total respondents (143).
This chart has a link to additional information.

Page 46. III. Associated Symptoms (page 3 of 4) cont.: Problems with balance
2. Comments concerning problems with balance:
Only now and again very mild. Had a big problem after major micro vascular surgery. Took a few weeks to get back to normal with the balance.
It's not that bad. It's like I have anemia and my body sudenly relaxes and I have no control of it but those episodes are very rare and short.
My guess is that it is related to fatigue and headache.
Sometimes I feel like my brain is misfiring (it's hard to explain) and I feel like I am going to tip over or am falling.
Sometimes head feels like it's not connected to neck.
I am constantly bumping into walls and doors.
Difficulty with moving stairs in shopping centers. Takes longer to regain balance after bending down or turning around.
Has physical and Occupation Therapy at school 3 times per week and at a Children's Hospital 1 time per week.
Did have some issues earlier where I fell over a lot but these seem to have gone now. Do have balance issues when I have a migraine.
This happens if I get tired and run down - starts with running into walls and doors progresses to tripping and then finally falling over.
Most likely due to Chiari Malformation. Trouble standing steady on both feet, especially with eyes closed.
I haven't had therapy for this.
Nothing major that I'm concerned with. Its more occasional at this time.
My daughter has been diagnosed with vertigo and she had one very severe bout with it. It impacted her balance.
I didn't know that Rombergs might be responsible for my slight problems with balance, I thought that it was due to anti-convulsives.
After the orginal surgery.
Number responding = 16 / percent responding = 11% 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.