The Romberg's Connection 2009 Survey Results

How Brain is Affected

Page 21. III. Associated Symptoms (page 1 of 4) cont.: Brain affected
1. Please select how brain is affected:

Affected

Responses
(48)

% of Number responding

Atrophy of

26%

Lesions

30%

Seizures

44%

Strokes
(blood clots)

White matter
abnormality

30%

Other (Specify)

41%

Number responding = 27 / percent responding = 19% of total respondents (143).
Note: This was a multiple choice question.
This chart has links to additional information.

Page 21. III. Associated Symptoms (page 1 of 4) cont.: Brain affected
2. Please describe what if any effective treatment was obtained:

Comments (18)
Avastin injections into the eye seemed to stop progression of optic nerve damage, but it did not cure the damage done.
None
I was prescribed ADHD (Attention-Deficit / Hyperactivity Disorder) medication (Ritalin) to help with brain function. I was told I have Organic ADHD because of Parry Rombergs Syndrome.
None
None
Lesion removed surgically, rest of smaller lesions reduced or eliminated by steroids (30mg every other day of Prednisone, infusion of 1000 mg of Methylprednisolone once per month). Methotrexate usage (20mg. once per week) to suppress over-active immune system.
I was not treated for the seizures since we were living in Jamaica at the time. When we returned to the US, the doctors put me on Phenobarbital, but my mother took me off of it since it made me sleep all the time and my last seizure was in Jamaica.
She is on Keppra, Methotrexate, folic acid, vitamin b6, Prilosec, Zantac, and just recently was taken off Prednisolone but may be put back on it and also she takes Naproxen.
I have been treated for chronic migraines and auras which my neurologist believes are related to Parry-Romberg.
For some time anti epileptic medicine were effective and he got no or only few seizures, but for long period - now since 3 years the anti epileptic medicines are no more effective, and he has gotten all kind of meds.
Seizure medication Pain medication
Pain relief
Inflammation in eye and face as well as appearance on her brain MRI was reduced with steroid therapy, both oral and IV pulse steroid.
After first, and thankfully only (so far) grand mal seizure, am taking 200 mg. of Topomax which is working well. This is being taken along w/ an 81 mg. aspirin, and meds for my Lupus. So far, so good!
Liquid silicone injections
Not sure if related to PRS or not, but cochlear nerve on affected side is enlarged.
Methotrexate - don't know if effective though can't imagine worse outcome than what we got.
Katie was on at least 8 different anti seizure meds plus steroid treatment and surgery, none of which worked, they would seem to work for awhile, but it was always short lived. Also increased seizure activity definitely around her cycle. Several times they put her into an anesthesia induced coma, to stop the seizures, but this ended up with her being on a respirator and finally trached, resulting in reccuring pneumonia.

Number responding = 18 / percent responding = 13% of total respondents (143).

Page 21. III. Associated Symptoms (page 1 of 4) cont.: Brain affected
3. Comments for Brain affected:

Comments (17)
Dizziness, vertigo, confusion, light-headed-ness, nausea
Left side of my brain is atrophied. I also have small lesions on brain. This was found on a MRI. Also at one point I had small cysts on my brain but they went away.
I haven't had a brain scan done, so don't know if the atrophy went into the brain.
Multiple lesions that seem to come and go, and one that's spread like little tentacles through portions of the right side and hasn't gone away entirely.
I had grand mal seizures. They took place only when I was sleeping. It would usually happen once about every other month. This lasted for about 3 years.
Still in proccess of being tested.
Typical PRS findings on MRI, whole right half of brain is smaller than left side. Particularly cerebellum and I am losing Motor Neurone on the PRS side causing spastic paralysis on the left side of my body. Also brain activity higher than normal - a sign that I could be prone to epilepsy although I've never had a seizure to date.
Severe migraines, seizures and she also gets these times where she just stares into space and drools.
She started getting alot of headaches when this first started, they have tapered off, but then she just had two this last week again.
Latest seizure activity difficult to locate on imaging.
Brain shows areas of calcification.
After IV pulse steroid therapy, progression in brain abnormalities were stopped and reversed slightly. Left temporal lobectomy was also done in effort to control intractable seizures.
Severe headaches since around 2004 - Doctors didn't know what caused them, and prescribed Indomethacin 50 mg. as needed which works pretty well. An MRI showed that I have three lesions back in '04 or '05, and after this seizure in Oct. '08, another showed that the lesions had changed a bit. Of course, they had to do tests for MS, etc. And, they are currently trying to figure out if my seizure was caused by the PRS, or by the Lupus... my guess is the PRS... Doctors only have me as a PRS patient- probably like all of the rest of you guys, huh?!
Not sure
Grand Mal Seizurs started in my 40's, happened only during sleep.
Negative neuro exam but does have changes on two consecutive MRI's.
Speech and memory loss, more so after the surgery to remove lesions which just made her worse.

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.